As much as I hate to admit it, staying here for Christmas was the right thing to do. I am slowly gaining my strength back from the stomach surgery, but need a few more days of rest before we head home but, I am already starting pack. We are boxing up all my summer clothes and will mail them back, and we bought a car top carrier for all of our extras.
The Wednesday before Christmas, Crystal and Wayne's niece, Lora, came over for a visit and bearing gifts. We have two small Christmas trees decorated and garland, bows and lights to make the apartment more festive. Wayne and I would go out for an hour or so every afternoon shopping and we eventually got it all done. He wrapped all the gifts, so we managed to get everything done, and with all the gifts it was "beginning to look a lot like Christmas."
The next day Cathy and Kayce flew in after spending the best share of the day at O'Hare. On Friday night Wayne took them to a Duke basketball game and they got to sit with the Cameron Crazies, which they loved. My nephew Daniel stopped in on Saturday evening to spend the night on his way to Florida. It was so nice to have a steady stream of company. It really made it seem more like home.
Sunday morning we packed up the car and made the 3 hour drive to Caroline and Jim's house at the coast. Their house was decorated beautifully and Caroline and Crystal had all the menus planed out and it was wonderful. We lit candles and sang Christmas carols and I was able to eat anything that was soft, and even had a few pieces of candy. It turned out to be a wonderful holiday.
We came home late Christmas day, and Cathy and Kayce flew back to Chicago. I saw the stomach surgeon on Friday and he has released me to go home. I'm having severe problems with my immune system and will have a 4 hour infusion on Wednesday and every 3 months from now on. IF all goes well, it is possible that my pulmonary doctor could release me on Thursday. As long as I stay healthy, I should be good to go.
Have a safe New Year and hope your Christmas was as magical as ours.
God Bless,
Joy
Saturday, December 29, 2007
Friday, December 21, 2007
Happy New Year in the "Pines"
We spent the day at the hospital Wednesday with pre-surgical testing prior to the bronch / dilation procedure. It may be to early, but Joy feels she may be breathing easier but make no mistake about it, still short of breath most of the time. Time should be the healer, so they say.
Thursday's clinic was the usual "all day sucker" but at this moment in time, her numbers appear to be stable or improving. She is tolerating the "real food diet" but appetite is nill and the size of her meals are very, very small. NOW! for the first time in her life, she is advised to maintain or gain weight....................not lose anymore. She is down to her high school weight and can't believe it.
We anticipate the surgeon to place Joy on regular diet and eliminate the nightly tube feeding when we meet with him next Friday. If she tolerates that and does not lose weight, the Team will meet and hopefully concur that she can be released to return to Illinois sometime in early January. A lot of if's to go.............
But she is encourage that the is the FIRST real conversation about her leaving the area albeit to return every month or so for awhile before 3 month return visits become the norm.
Merry Christmas and Happy New Year from the Carolina pines.
Thursday's clinic was the usual "all day sucker" but at this moment in time, her numbers appear to be stable or improving. She is tolerating the "real food diet" but appetite is nill and the size of her meals are very, very small. NOW! for the first time in her life, she is advised to maintain or gain weight....................not lose anymore. She is down to her high school weight and can't believe it.
We anticipate the surgeon to place Joy on regular diet and eliminate the nightly tube feeding when we meet with him next Friday. If she tolerates that and does not lose weight, the Team will meet and hopefully concur that she can be released to return to Illinois sometime in early January. A lot of if's to go.............
But she is encourage that the is the FIRST real conversation about her leaving the area albeit to return every month or so for awhile before 3 month return visits become the norm.
Merry Christmas and Happy New Year from the Carolina pines.
Thursday, December 13, 2007
Discharged, once again
Joy was discharged mid-afternoon yesterday so once again we are adjusting to a new routine.
As expected, she remains on a near normal diet but served in pureed form. Even oatmeal must be prepared in a blender for smoother texture. No big deal. She will remain on this program for about 2 weeks or until such time as we see the surgeon in clinic. Discharge orders indicated that she remain on tube feeding as well and we are attempting to get clarification on that. All meds can be taken orally. So far, she has not experienced any side effects to eating or swallowing.
She will return to hospital on the 19 th for a bronch / dilation procedure to open the lower airways in her lung (s). Then, pulmonary clinic with blood, lab and transplant pulmonary appointment the next day.
Believe.
Now, Wayne needs to check the Duke men's and women's basketball schedule for dates and times and hopefully Joy's schedule won't interfere with that. She may have to adjust her schedule. First things first.
As expected, she remains on a near normal diet but served in pureed form. Even oatmeal must be prepared in a blender for smoother texture. No big deal. She will remain on this program for about 2 weeks or until such time as we see the surgeon in clinic. Discharge orders indicated that she remain on tube feeding as well and we are attempting to get clarification on that. All meds can be taken orally. So far, she has not experienced any side effects to eating or swallowing.
She will return to hospital on the 19 th for a bronch / dilation procedure to open the lower airways in her lung (s). Then, pulmonary clinic with blood, lab and transplant pulmonary appointment the next day.
Believe.
Now, Wayne needs to check the Duke men's and women's basketball schedule for dates and times and hopefully Joy's schedule won't interfere with that. She may have to adjust her schedule. First things first.
Tuesday, December 11, 2007
Christmas in Dixie
Joy had a restful night and tolerated the bronch / biopsy this morning. They removed some fluid but discovered narrowed airways in the right lung which may be corrected by a similar procedure next week. She had additional x-rays to determine the extent of fluid build up outside the lungs in the chest cavity. If significant, they may want to "needle aspirate" that fluid. Joy had pureed lunch and dinner without any apparent issues or concerns. Time will tell!
If all of the planets and moons align perfectly tomorrow, she may be discharge with the anticipated lung procedure handled as an outpatient next week. Ideally, they want to monitor her eating for a couple weeks after surgery so we must be local should complications develop. Additionally, the transplant team wants her to remain local until she is once again back to normal from an oxygen saturation perspective so it wise to remain here and enjoy Christmas in Dixie and not create a hasty return home. Given the current weather conditions in Chicago and our high 70 degree days here, spending the holiday at daughter Caroline and Jim's home on the NC coast sounds quite appealing. Cathy and Kayce will fly down to join in the festivities. Truth be known, they probably just want to get out of the bad and cold weather in Chicago. Go figure!
If all of the planets and moons align perfectly tomorrow, she may be discharge with the anticipated lung procedure handled as an outpatient next week. Ideally, they want to monitor her eating for a couple weeks after surgery so we must be local should complications develop. Additionally, the transplant team wants her to remain local until she is once again back to normal from an oxygen saturation perspective so it wise to remain here and enjoy Christmas in Dixie and not create a hasty return home. Given the current weather conditions in Chicago and our high 70 degree days here, spending the holiday at daughter Caroline and Jim's home on the NC coast sounds quite appealing. Cathy and Kayce will fly down to join in the festivities. Truth be known, they probably just want to get out of the bad and cold weather in Chicago. Go figure!
Monday, December 10, 2007
Progress?
Although the 24 hour tube feeding, continuous supplemental oxygen and several IV's remain, Joy is making some progress. The O2 saturation levels hold at satisfactory levels WITH O2 but drop to much when walking, bathing, etc..
Swallow test conducted today showed "slight" opportunity for thin fluid to go down the windpipe instead of the esophagus but they feel they can train her to change the way she eats and swallows to overcome this issue so the plan is to start her on pureed food tomorrow, after she recovers from another bronch / biopsy procedure. Hopefully, but doubtful that they can extract enough fluid from her right lung to improve her breathing and shortness of breath. One of the conditions for going home will be to be able to function without O2, once again.
So we look for result from the biopsy / bronch, see if she can tolerate food once again and continue to show improvement with the breathing issue. And, no aspiration. She was lucky that this one happened in the hospital! Otherwise, it could have been even more catastrophic or potentially fatal so we MUST ensure she is eating and breathing before we could consider leaving the area regardless of the calender.
Will see what tomorrow brings.
Swallow test conducted today showed "slight" opportunity for thin fluid to go down the windpipe instead of the esophagus but they feel they can train her to change the way she eats and swallows to overcome this issue so the plan is to start her on pureed food tomorrow, after she recovers from another bronch / biopsy procedure. Hopefully, but doubtful that they can extract enough fluid from her right lung to improve her breathing and shortness of breath. One of the conditions for going home will be to be able to function without O2, once again.
So we look for result from the biopsy / bronch, see if she can tolerate food once again and continue to show improvement with the breathing issue. And, no aspiration. She was lucky that this one happened in the hospital! Otherwise, it could have been even more catastrophic or potentially fatal so we MUST ensure she is eating and breathing before we could consider leaving the area regardless of the calender.
Will see what tomorrow brings.
Friday, December 7, 2007
Not Much Change
Modified swallow test indicated "some" aspiration but test was completed late in the day so we do not know where they will go with this.
Vomiting has ceased but it should since she hasn't eaten and water only limited to small sips with some meds that cannot be handled through IV's. Back on the stomach feed for 24 hours, not just 14, at least for now. Chest x-ray has changed very little. O2 levels drop significantly for any activity other than laying in bed. They feel this should improve as the body rids the aspiration from the lungs.
Now it is the weekend and nothing will happen!
Vomiting has ceased but it should since she hasn't eaten and water only limited to small sips with some meds that cannot be handled through IV's. Back on the stomach feed for 24 hours, not just 14, at least for now. Chest x-ray has changed very little. O2 levels drop significantly for any activity other than laying in bed. They feel this should improve as the body rids the aspiration from the lungs.
Now it is the weekend and nothing will happen!
Thursday, December 6, 2007
Remember "The Dime"
When I left the hospital last evening, Joy and I walked the halls and she was eating the full liquid diet albeit esophagus issues that I mentioned yesterday. We fully anticipated discharge today.
I think I have mentioned previously, how this process can "turn on a dime".
When I arrived this AM, she was on oxygen, several IV's, folley catheter, no food, no water, no activity and was extremely uncomfortable from almost non-stop vomiting. Her oxygen saturation level dropped to the high 70's (>88% causes concerns) during the night and she became extremely short of breath which drew a room full of physicians, nurses and respiratory staff. Chest x-ray showed significant fluid around the right lung.
By mid day, the vomiting had ceased and her O2 levels returned to the low to mid 90's WITH supplemental O2. Her stomach area is very sore undoubtedly caused by the strain from the vomiting. The speculation is that she aspirated food into the lungs possibly due to previously mentioned issues with the esophagus and edema from the surgery. I don't understand all of this since my degree didn't cover gastroenterology and pulmonary specialities.
They have scheduled another and more technical swallow study test for tomorrow to get a better picture of the problem. They have prescribed Lasik (diuretic) again with hopes this will reduce the fluid around the lung. So, no food until that swallow and back on the stomach feeding that we thought was history.
"We knew it was just to good to be true".
I think I have mentioned previously, how this process can "turn on a dime".
When I arrived this AM, she was on oxygen, several IV's, folley catheter, no food, no water, no activity and was extremely uncomfortable from almost non-stop vomiting. Her oxygen saturation level dropped to the high 70's (>88% causes concerns) during the night and she became extremely short of breath which drew a room full of physicians, nurses and respiratory staff. Chest x-ray showed significant fluid around the right lung.
By mid day, the vomiting had ceased and her O2 levels returned to the low to mid 90's WITH supplemental O2. Her stomach area is very sore undoubtedly caused by the strain from the vomiting. The speculation is that she aspirated food into the lungs possibly due to previously mentioned issues with the esophagus and edema from the surgery. I don't understand all of this since my degree didn't cover gastroenterology and pulmonary specialities.
They have scheduled another and more technical swallow study test for tomorrow to get a better picture of the problem. They have prescribed Lasik (diuretic) again with hopes this will reduce the fluid around the lung. So, no food until that swallow and back on the stomach feeding that we thought was history.
"We knew it was just to good to be true".
Wednesday, December 5, 2007
Progressing
Joy continued to improve today and now on a full liquid diet which we expect that she will be on for a couple weeks prior to the pureed foods. She is definitely experiencing problems with food and meds slowing down or holding in her esophagus which at times is rather painful and uncomfortable. How long will she have this issue? Days, weeks, months or forever????? Hopefully, more like weeks but unfortunately, this is a very uncomfortable but frequent side effect of the surgery.
It is possible that she may be discharged tomorrow, but time will tell.
It is possible that she may be discharged tomorrow, but time will tell.
Tuesday, December 4, 2007
Unable to Complete Barium Swallow Test
She had a restful night and is doing better than either of us expected today thus far. We were extremely disappointed that she was unable to "pass" the swallow test but it did not reveal any leaks or tears so that is a positive. We are not really clear on when they will repeat the test but may wait a couple days for internal swelling to diminish. They removed her IV's and pain med pump and plan to start her on oral meds tonight or tomorrow. They gave her some liquids and she did not experience any problems so we do not know what to expect or when she will start with pureed foods.
Monday, December 3, 2007
Surgery Completed
Joy's surgery concluded late this afternoon after several hours delay due to emergency surgery on a kidney transplant patient. According to the surgeon, the surgery went according to plan and she remained stable throughout. Although heavily sedated, she was awake enough to suggest that I go home, get a good nights sleep and take my time getting back tomorrow. They were hooking her up to a morphine pump so she can administer pain med as needed.
Plan for tomorrow will be to complete another "swallow" test to ensure their are no leaks and that she actually can swallow. If this is successful, then it will be clear liquids for a day and then combination of clear liquids and pureed food for a couple weeks. Then if that is successful, it will be very small but frequent meals of extremely well chewed small bites of food the rest of her natural life.
A long way to go...........................we know of more people with complications from this surgery than successes so we hope for the best.
Plan for tomorrow will be to complete another "swallow" test to ensure their are no leaks and that she actually can swallow. If this is successful, then it will be clear liquids for a day and then combination of clear liquids and pureed food for a couple weeks. Then if that is successful, it will be very small but frequent meals of extremely well chewed small bites of food the rest of her natural life.
A long way to go...........................we know of more people with complications from this surgery than successes so we hope for the best.
Friday, November 30, 2007
Surgery Date Confirmed
Surgery is now scheduled for 12:30 PM Monday, December 3, 2007.
Hopefully, the 4-5 hour surgery can be done with several laproscopic incisions, then begin her recovery with light liquids and pureed food prior to being discharged in a few days. The feeding tube will remain until we return in January or February.
No more nightly tube feeding? Significant reduction in insulin injections? No more acid reflux?
Joy has a bronchoscopy schedule for December 11 th and pulmonary clinic on December 12 th. Will she get a release then? A lot of bridges yet to cross. One of our new friends was packed and planned on returning home after her clinic visit yesterday but bronch results indicated problems and she was re-admitted. Her daughter seemed a "little down". Ya think?
Joy will really need our prayers for this one!
Hopefully, the 4-5 hour surgery can be done with several laproscopic incisions, then begin her recovery with light liquids and pureed food prior to being discharged in a few days. The feeding tube will remain until we return in January or February.
No more nightly tube feeding? Significant reduction in insulin injections? No more acid reflux?
Joy has a bronchoscopy schedule for December 11 th and pulmonary clinic on December 12 th. Will she get a release then? A lot of bridges yet to cross. One of our new friends was packed and planned on returning home after her clinic visit yesterday but bronch results indicated problems and she was re-admitted. Her daughter seemed a "little down". Ya think?
Joy will really need our prayers for this one!
Wednesday, November 21, 2007
Still No Surgery Date )*&^%$#@(
We have not updated this site lately since nothing was proceeding according to our plan. However Joy continues to gain strength, shows improvement and feels the best post surgery.
Clinic went well today and her labs, x-rays and manometry test were satisfactory and all of Joy's doctors are convinced 100% that this surgery is necessary and the outcome should provide protection to the new lungs from reflux aspiration and therefore increasing her lifespan.
So you ask, "what is the delay?" Depends upon the &%$#(@$ surgeon's schedule and thus far we have not been successful in getting a date that sticks. Maybe next week? The following week? And, Joy is getting very, very, very hungry. Almost 5 months and no food and limited water.
Cathy and Kayce have been invited to one of our friends house for Thanksgiving dinner. Kevin is going out of town on a hunting trip. Caroline and Crystal along with niece Lora and her friend Erica will join Joy and me for Thanksgiving dinner at a local restaurant. Joy will sip water on ice while we indulge. She might nibble a little but don't tell anyone!
So, we enjoy the beautiful weather and fantastic fall foliage and pray for rain to help towards the 60 day remaining water supply for the area.
Happy Thanksgiving
Clinic went well today and her labs, x-rays and manometry test were satisfactory and all of Joy's doctors are convinced 100% that this surgery is necessary and the outcome should provide protection to the new lungs from reflux aspiration and therefore increasing her lifespan.
So you ask, "what is the delay?" Depends upon the &%$#(@$ surgeon's schedule and thus far we have not been successful in getting a date that sticks. Maybe next week? The following week? And, Joy is getting very, very, very hungry. Almost 5 months and no food and limited water.
Cathy and Kayce have been invited to one of our friends house for Thanksgiving dinner. Kevin is going out of town on a hunting trip. Caroline and Crystal along with niece Lora and her friend Erica will join Joy and me for Thanksgiving dinner at a local restaurant. Joy will sip water on ice while we indulge. She might nibble a little but don't tell anyone!
So, we enjoy the beautiful weather and fantastic fall foliage and pray for rain to help towards the 60 day remaining water supply for the area.
Happy Thanksgiving
Friday, November 9, 2007
Surgery Date Unknown
The surgeon called this morning to advise that after studying some of her recent test results, he wants to confer with endoskopy doctors to resolve any concerns. The concern is and actually has been previously, that muscles in her esophagus have weakened which may delay food movement (motility) to the stomach. So if he reduced the size of the opening into the stomach to reduce acid reflux, it may also cause motility problems at that juncture and compound her problem. Since these tests were done more than a week ago, we just wonder why this issue was not resolved prior to yesterdays roller coaster ride of emotions.
So, we wait and expect to get an update from the doctor "sometime next week", whatever that means in doctor speak. This will be a 4 1/2 to 5 hour surgery so we want them to get it right!
Joy continues to gain strength, finally getting out and about and still catching up on her sleep. Clinic went well yesterday and PFT numbers were the best post transplant.
So, we wait and expect to get an update from the doctor "sometime next week", whatever that means in doctor speak. This will be a 4 1/2 to 5 hour surgery so we want them to get it right!
Joy continues to gain strength, finally getting out and about and still catching up on her sleep. Clinic went well yesterday and PFT numbers were the best post transplant.
Thursday, November 8, 2007
SURGERY CANCELLED
Stomach surgery scheduled for tomorrow has been cancelled, apparently over concerns with recent test results. That is all that we know at this time (1:00 PM EST).
Stay tuned......................
Stay tuned......................
Monday, November 5, 2007
Progress
We went shopping on Saturday and Sunday for a couple hours which included a trip to the nail salon and a pharmacy run. Both, pretty good days and she said she feels a little human for a change.
She received a phone call today from the surgeon's office advising that her surgery is scheduled for Friday. Between now and then, we will meet with him in clinic, have a regular clinic visit and a pre-op clinic appointment and another day of rehab. Joy tolerated her first day back to rehab today quite well.
This surgery is not the panacea to end all and is not without risk but, we have to trust the doctors medical advice that it is absolutely critical so, we proceed. The surgeon describes her reflux severe enough to cause lethal incidences and worthy of the risk for increasing her chances of survival.
She received a phone call today from the surgeon's office advising that her surgery is scheduled for Friday. Between now and then, we will meet with him in clinic, have a regular clinic visit and a pre-op clinic appointment and another day of rehab. Joy tolerated her first day back to rehab today quite well.
This surgery is not the panacea to end all and is not without risk but, we have to trust the doctors medical advice that it is absolutely critical so, we proceed. The surgeon describes her reflux severe enough to cause lethal incidences and worthy of the risk for increasing her chances of survival.
Thursday, November 1, 2007
Discharged
this Against Joy's wishes, she was discharged this afternoon and will return to clinic next Tuesday to meet with the surgeon to discuss a date, hopefully soon. They promise any delay is for medical reasons and not scheduling. The rejection and infection issue has complicated this somewhat but not to the extent that they cannot do the surgery. The doctors are 100% certain that it is medically necessary due in part to Joy having the worst case of acid reflux they have seen. If she did not have the surgery, the reflux would continue to infect and destroy her lungs and drastically impact her survival. Six to nine months of the three antibiotics should control the MAC infection mentioned a couple days ago.
So, the Thanksgiving trip looks doubtful but she is adamant that as Dolly Parton sings, "Trim the tree and wrap the presents, turn the Christmas music on, this Christmas I'll be home with bells on."
So, the Thanksgiving trip looks doubtful but she is adamant that as Dolly Parton sings, "Trim the tree and wrap the presents, turn the Christmas music on, this Christmas I'll be home with bells on."
Wednesday, October 31, 2007
No Real News
Joy has completed all of the tests that we are aware of and it does not appear that the results will preclude her from having the stomach surgery. The question is, when?
She may be released tomorrow but then have to wait "a brief period of time" before surgery. Clearly, this is not what she wants. Instead, she would prefer to stay in, have surgery, recover, return to apartment for brief period of time and then head north. She does not agree with the doctors that the rehab activities will strengthen her as much as they think it will. And, she is getting really, really anxious to eat and drink something!!!! Both doctors will confer tomorrow and hopefully, we will know the plan.
More tomorrow.
She may be released tomorrow but then have to wait "a brief period of time" before surgery. Clearly, this is not what she wants. Instead, she would prefer to stay in, have surgery, recover, return to apartment for brief period of time and then head north. She does not agree with the doctors that the rehab activities will strengthen her as much as they think it will. And, she is getting really, really anxious to eat and drink something!!!! Both doctors will confer tomorrow and hopefully, we will know the plan.
More tomorrow.
Tuesday, October 30, 2007
Surgery Cancelled, for now at least
Joy feeling only slightly better and certainly not worse. She had a PH test today to look at the esophagus after an earlier test indicated that some of the muscles were not contracting properly to push the food to the stomach. Tomorrow she is scheduled to conclude the testing with a endoscopy and then the surgeon and her transplant team physician will consult to determine what they are going to do. Joy would just like to pack up and go home but that too, is risky so we wait.
FAQ....Will she be able to swallow food properly after stomach surgery?
Is the acid reflux from the stomach causing aspiration and damage to lungs?
Can she avoid surgery completely?
Can she wait and have surgery later and if so, can she eat regular diet now?
Can they do anything to repair the esophagus muscles?
Are there other issues unknown at this time?
Answers to the above....................don't know. I guess that is why there is a tomorrow or the next day.
Oh by the way! Steve, cook the steaks well done. It was like taking candy from a baby.
FAQ....Will she be able to swallow food properly after stomach surgery?
Is the acid reflux from the stomach causing aspiration and damage to lungs?
Can she avoid surgery completely?
Can she wait and have surgery later and if so, can she eat regular diet now?
Can they do anything to repair the esophagus muscles?
Are there other issues unknown at this time?
Answers to the above....................don't know. I guess that is why there is a tomorrow or the next day.
Oh by the way! Steve, cook the steaks well done. It was like taking candy from a baby.
Monday, October 29, 2007
Monday Update
Joy feeling slightly better but not significantly improved.
A test today indicated a small blockage or narrowed esophogus (sp) which inhibited swallowed material to reach the stomach so they plan another endoskopy (sp) tomorrow and a PH swallow test Wednesday and then consult with stomach surgeon.
So, will she have the stomach surgery Wednesday? Don't know, so stay tuned.
A test today indicated a small blockage or narrowed esophogus (sp) which inhibited swallowed material to reach the stomach so they plan another endoskopy (sp) tomorrow and a PH swallow test Wednesday and then consult with stomach surgeon.
So, will she have the stomach surgery Wednesday? Don't know, so stay tuned.
Sunday, October 28, 2007
Weekend Update
Joy's condition remains relatively unchanged and as you know, things around hospitals get pretty quiet on the weekends so no news from the biopsy or test results. Still do not know if the stomach surgery will be done Wednesday or not. One day at a time.
Friday, October 26, 2007
Pneumonia
Bronch / biopsy preliminary assessment is pneumonia plus the rejection. The removed a lot of "yucky" fluid and some solid tissue segments which will be analyzed in the lab over the next few days. They used a balloon process to enlarge a narrowed airway which may give her some relief to the shortness of breath issue. Theory continues to be that she is aspirating acid reflux into the lungs which develops into infection. Surgery may be delayed due to her overall weakened condition. Joy is discouraged at the possibility of a delay but I am not sure she could handle it given her current condition. A change in antibiotics should take place overnight. Doctor said this bronch looked much worse than previous procedure completed about a week ago.
This doctor has been absolutely fantastic and extremely aggressive so we continue to anticipate.
Helen, the wife of friend Claude that died from transplant surgery was in town for memorial service for those transplant patients that have died recently and she came to visit us. She is doing great but it was an understandably emotional visit.
This doctor has been absolutely fantastic and extremely aggressive so we continue to anticipate.
Helen, the wife of friend Claude that died from transplant surgery was in town for memorial service for those transplant patients that have died recently and she came to visit us. She is doing great but it was an understandably emotional visit.
Thursday, October 25, 2007
Nightly News
A couple more tests last night and today have not yet defined her shortness of breath and weakened condition. The doctor is waiting on the results of one of the heart tests completed today with focus on possible fluid build up around the heart and heart / oxygen related issues. The doctor is committed to keeping her until he finds the problem and solution. He just cannot pinpoint at this time. We have 100% confidence in him but frustrating to Joy that she does not feel better.
Although she recently had a bronc biopsy, the doctor will complete another tomorrow with hopes of discovery.
Steve B., enjoy your game Saturday. I doubt seriously if Joy will feel like watching unless she improves drastically.
Although she recently had a bronc biopsy, the doctor will complete another tomorrow with hopes of discovery.
Steve B., enjoy your game Saturday. I doubt seriously if Joy will feel like watching unless she improves drastically.
Wednesday, October 24, 2007
A Few More Days?
As I suspected, they are continuing her steroid and antibiotic treatments in the hospital with additional tests planned tonight or tomorrow to explore the reasons for her continued shortness of breath and overall weakness. Her voice is just a whisper at times.
Pain Management Clinic will recommend drug treatment to the transplant team so we hope they will agree and implement accordingly. Pain is not terribly severe unless she is exercising or walking but regardless, we want to find a solution for the future.
Depending upon the results of these tests, she may have to have the chest tube reinserted (ouch....that was painful) or if fluid build up is not a problem and if the scan shows aspiration of reflux acid into the lungs, they will try to schedule the stomach surgery as quickly as possible. Until then, she is not allowed any water and pills must now be crushed and administered through the stomach feeding tube.
Her former pulmonology doctor from Duke came by for a social visit today and she chided him about not telling her it would be this bad but, he reminded her that he told her over a year ago that she was trading one serious disease for another and encouraged her to keep the faith that things will get better. He did not however, mention a timetable for that. smile.
A couple of our transplant friends Wayne and his wife Carol came by to say hello today. Wayne is back for a clinic visit and scheduled bronc and appears to be doing well. He got his lungs about a month before Joy. We wish them the best.
We will wait and see what tomorrow brings. Good night.
Pain Management Clinic will recommend drug treatment to the transplant team so we hope they will agree and implement accordingly. Pain is not terribly severe unless she is exercising or walking but regardless, we want to find a solution for the future.
Depending upon the results of these tests, she may have to have the chest tube reinserted (ouch....that was painful) or if fluid build up is not a problem and if the scan shows aspiration of reflux acid into the lungs, they will try to schedule the stomach surgery as quickly as possible. Until then, she is not allowed any water and pills must now be crushed and administered through the stomach feeding tube.
Her former pulmonology doctor from Duke came by for a social visit today and she chided him about not telling her it would be this bad but, he reminded her that he told her over a year ago that she was trading one serious disease for another and encouraged her to keep the faith that things will get better. He did not however, mention a timetable for that. smile.
A couple of our transplant friends Wayne and his wife Carol came by to say hello today. Wayne is back for a clinic visit and scheduled bronc and appears to be doing well. He got his lungs about a month before Joy. We wish them the best.
We will wait and see what tomorrow brings. Good night.
Tuesday, October 23, 2007
Infection Plus Rejection
Long running lab tests have confirmed that Joy has infection in addition to rejection( see previous blog). She mentioned a few weeks ago that whenever she got an infection, she was hoping that it would not be Mycobacterium Avium-Complex (MAC) however that is what she has. It is a slow growing infection that is more difficult to treat since it resides inside the cells and tough to kill. MAC is most likely environmentally acquired and normally found in pulmonary disease patients and in their respiratory track. So, in addition to the high dose of steroids she has received, they added two strong and high dose antibiotics that she must take for about NINE (9) months!
She is still experiencing shortness of breath when walking but not as severe a few days ago. She just doesn't feel good and I think the steroids and antibiotics have a lot to do with that. They are planning a pulmonary function test and more x-rays tomorrow and may be discharged but I will believe it when I see it. She certainly is not anxious to leave but she will be able to continue this same course of treatment at home. Regardless, we will make the Pain Management Clinic tomorrow to seek help with the ongoing back pain issue. Then, Center for Living Thursday and Friday, all day clinic appointment Monday, pre-op clinic Tuesday and surgery on Wednesday. I hope she can handle it all.
I feel so bad for her...............she has not had a real good day in the last six (6) months and certainly not since transplants and the outlook ahead may be more of the same when you add all these issues together. It would be just fantastic to see her have a good day, just every now and then. God, just a few days would be fine........................ for now!
She is still experiencing shortness of breath when walking but not as severe a few days ago. She just doesn't feel good and I think the steroids and antibiotics have a lot to do with that. They are planning a pulmonary function test and more x-rays tomorrow and may be discharged but I will believe it when I see it. She certainly is not anxious to leave but she will be able to continue this same course of treatment at home. Regardless, we will make the Pain Management Clinic tomorrow to seek help with the ongoing back pain issue. Then, Center for Living Thursday and Friday, all day clinic appointment Monday, pre-op clinic Tuesday and surgery on Wednesday. I hope she can handle it all.
I feel so bad for her...............she has not had a real good day in the last six (6) months and certainly not since transplants and the outlook ahead may be more of the same when you add all these issues together. It would be just fantastic to see her have a good day, just every now and then. God, just a few days would be fine........................ for now!
Monday, October 22, 2007
Rejection
They removed the chest tube late yesterday partially due to the belief that it had done its job and also that it was not functioning properly. But, it did drain a significant amount of fluid and apparently most of the air.
Several x-rays later, they determined that fluid / air build up was no worse than at the time the tube was removed so at this moment, it does not appear that it will be necessary to insert another. That was painful.
These current problems was the result of rejection and is now being treated with high doses of steroid IVs and antibiotics, to treat any residual infection that may be present but has not developed cultures in the lab. Her insulin levels are jumping all over the place both high and low caused by the high steroid doses. They are monitoring closely.
There is absolutely nothing about this that is a surprise and it is simply a part of the normal life for most lung transplant patients so, we live with it and move on. Although we certainly do not want flare ups like this, it is only a matter of when and not if especially, but not limited to the first couple years. At least at this time, it is treatable.
Hopefully, a few days of this regime and she can come home for a couple days prior to going back to the hospital next week for surgery. But, one day at a time.
Several x-rays later, they determined that fluid / air build up was no worse than at the time the tube was removed so at this moment, it does not appear that it will be necessary to insert another. That was painful.
These current problems was the result of rejection and is now being treated with high doses of steroid IVs and antibiotics, to treat any residual infection that may be present but has not developed cultures in the lab. Her insulin levels are jumping all over the place both high and low caused by the high steroid doses. They are monitoring closely.
There is absolutely nothing about this that is a surprise and it is simply a part of the normal life for most lung transplant patients so, we live with it and move on. Although we certainly do not want flare ups like this, it is only a matter of when and not if especially, but not limited to the first couple years. At least at this time, it is treatable.
Hopefully, a few days of this regime and she can come home for a couple days prior to going back to the hospital next week for surgery. But, one day at a time.
Friday, October 19, 2007
Hospitalization Update
Joy slept the best last night that she has, probably since transplant. She felt pretty good this morning however, she had a long day ahead.
They took her to surgery to extract the fluid from outside her lungs but within the lung cavity. They removed over a liter of fluid and although she was a little sore and groggy when she returned, she was breathing better but not 100%.
Just minutes after she returned to her room, they took her back to surgery because the post-procedure x-ray revealed a partially collapsed right lung and it was necessary to insert a drainage tube in her back to remove the accumulation of air in her lung pleural cavity and also allow for training of fluid not removed in the earlier procedure. She was in a lot of pain after and very uncomfortable when I left tonight.
The preliminary report from yesterdays biopsy does not indicate infection and a quick examination of the fluid removed today does not appear to be infection and does not show emphatic evidence of rejection however, they feel she exhibits classic signs of rejection and they plan to start treating that empirically tomorrow with anti-biotics and steroids. They will x-ray her in the morning to determine if any fluid remains and ensure the lung has expanded normally then decide how long to keep the tube in place. Maybe a couple days? IV's, feeding tube, drain/suction tube, monitors................she has about had it with tubes and wired monitors!
They do not know how long she will remain hospitalized but do not feel that this will interfere with her upcoming stomach surgery on the 31st. So she may get a few days of freedom.
This has been a long and exhausting day for her and although she is not depressed over these blips, she is understandably a little down. Hopefully, her night will not be to bad and she will feel better tomorrow.
They took her to surgery to extract the fluid from outside her lungs but within the lung cavity. They removed over a liter of fluid and although she was a little sore and groggy when she returned, she was breathing better but not 100%.
Just minutes after she returned to her room, they took her back to surgery because the post-procedure x-ray revealed a partially collapsed right lung and it was necessary to insert a drainage tube in her back to remove the accumulation of air in her lung pleural cavity and also allow for training of fluid not removed in the earlier procedure. She was in a lot of pain after and very uncomfortable when I left tonight.
The preliminary report from yesterdays biopsy does not indicate infection and a quick examination of the fluid removed today does not appear to be infection and does not show emphatic evidence of rejection however, they feel she exhibits classic signs of rejection and they plan to start treating that empirically tomorrow with anti-biotics and steroids. They will x-ray her in the morning to determine if any fluid remains and ensure the lung has expanded normally then decide how long to keep the tube in place. Maybe a couple days? IV's, feeding tube, drain/suction tube, monitors................she has about had it with tubes and wired monitors!
They do not know how long she will remain hospitalized but do not feel that this will interfere with her upcoming stomach surgery on the 31st. So she may get a few days of freedom.
This has been a long and exhausting day for her and although she is not depressed over these blips, she is understandably a little down. Hopefully, her night will not be to bad and she will feel better tomorrow.
Thursday, October 18, 2007
Admitted to Hospital
Joy has experienced unusual shortness of breath and increased anxiety levels over the last several days and a Transplant Team doctor wanted us to bring her to clinic immediately for an unscheduled visit. Although most of her numbers are still reasonably satisfactory, she was symptomatic of undetermined issues and he quickly admitted her to the hospital. We do not feel these issues are directly related to her emergency visit last week especially we are seeing progress after that visit.
She presented with a couple issues that may have indicated blood clots or a pulmonary embolism however, I think by the end of today several tests have ruled those out and blood thinners should not be necessary at this time.
The surgical bronc / biopsy revealed significant narrowing and inflammation of her airways plus signs of possible infection or rejection but the cause or treatment for these will not be determined until later tomorrow after they receive the preliminary lab results. The narrowing of the airways is something new and they do not know the cause at this time. Further tests are scheduled tomorrow focusing on a "pocket" of fluid build up around her right lung. They cannot tell at this time what this represents and they may need to do a needle biopsy for an accurate diagnosis.
They introduced a couple new meds to help with anxiety and insomnia issues and Joy gladly welcomed the help. Now, we will see if she sleeps tonight!
So, we are glad they have validated some concerns that support her symptoms and are encouraged and confident this trip will produce results. Everything considered, this is only her second unscheduled re-admit since transplant which compares (I should not do that) favorably with most other patients especially during these first three plus months. We are hoping that these issues are identified and treated and not interfere with her scheduled surgery on the 31st. Nothing at this time indicates that it will.
We continue to appreciate those of you that read this blog and enjoy your comments. If for whatever reason you wish to comment outside of the blog, you can use my email address at waynebulla@sbcglobal.net
She presented with a couple issues that may have indicated blood clots or a pulmonary embolism however, I think by the end of today several tests have ruled those out and blood thinners should not be necessary at this time.
The surgical bronc / biopsy revealed significant narrowing and inflammation of her airways plus signs of possible infection or rejection but the cause or treatment for these will not be determined until later tomorrow after they receive the preliminary lab results. The narrowing of the airways is something new and they do not know the cause at this time. Further tests are scheduled tomorrow focusing on a "pocket" of fluid build up around her right lung. They cannot tell at this time what this represents and they may need to do a needle biopsy for an accurate diagnosis.
They introduced a couple new meds to help with anxiety and insomnia issues and Joy gladly welcomed the help. Now, we will see if she sleeps tonight!
So, we are glad they have validated some concerns that support her symptoms and are encouraged and confident this trip will produce results. Everything considered, this is only her second unscheduled re-admit since transplant which compares (I should not do that) favorably with most other patients especially during these first three plus months. We are hoping that these issues are identified and treated and not interfere with her scheduled surgery on the 31st. Nothing at this time indicates that it will.
We continue to appreciate those of you that read this blog and enjoy your comments. If for whatever reason you wish to comment outside of the blog, you can use my email address at waynebulla@sbcglobal.net
Friday, October 12, 2007
Emergency Run
The last couple weeks has seen a regression and my senses were telling me that Joy would be back in the hospital soon for whatever ailed here. But we escaped with only an emergency visit.
Brother Don and wife Bonnie were in the area visiting their daughter Lora and met me close by for lunch when I received an urgent call from Joy. We quickly returned to the apartment, assessed the situation and Don and I loaded her in the "family truckster" and off to Duke we went.
Many of the regressive issues and concerns appear to be medicine induced reactions or intolerance which I have suspected for some time. Her doctor eliminated two meds that he felt were causing these issues but it is my guess is that it will take some time for her system to react. He later added a mineral supplement to bolster that deficiency.
In addition to the daily Center for Living rehab and weekly clinic appointments, she has an appointment with the Pain Management Clinic (continued back pain issues) on 10/24, surgical bronc / biopsy on 10/22 and Nissen (stomach surgery) on 10/31, so that should keep her busy!
But, Duke football continues to lose, The Ohio State University Buckeyes continue on a roll and for my Notre Dame friend Dave, he is happy just to win a game. And for my Northwestern fan Dave, he is happier about his season than the Dukies so everybody is a winner! And for our Penn State loyalists, it may be tough love time and merely say "it is time for you to go". smile. Duke women's and men's basketball practice starts tonight so I know where I will spend my afternoons for a couple weeks while Joy sweats it out at CFL. I was lucky enough to purchase face value tickets for two regular season Duke men's basketball games................priceless! I just knew there was a reason we had to remain here.
Brother Don and wife Bonnie were in the area visiting their daughter Lora and met me close by for lunch when I received an urgent call from Joy. We quickly returned to the apartment, assessed the situation and Don and I loaded her in the "family truckster" and off to Duke we went.
Many of the regressive issues and concerns appear to be medicine induced reactions or intolerance which I have suspected for some time. Her doctor eliminated two meds that he felt were causing these issues but it is my guess is that it will take some time for her system to react. He later added a mineral supplement to bolster that deficiency.
In addition to the daily Center for Living rehab and weekly clinic appointments, she has an appointment with the Pain Management Clinic (continued back pain issues) on 10/24, surgical bronc / biopsy on 10/22 and Nissen (stomach surgery) on 10/31, so that should keep her busy!
But, Duke football continues to lose, The Ohio State University Buckeyes continue on a roll and for my Notre Dame friend Dave, he is happy just to win a game. And for my Northwestern fan Dave, he is happier about his season than the Dukies so everybody is a winner! And for our Penn State loyalists, it may be tough love time and merely say "it is time for you to go". smile. Duke women's and men's basketball practice starts tonight so I know where I will spend my afternoons for a couple weeks while Joy sweats it out at CFL. I was lucky enough to purchase face value tickets for two regular season Duke men's basketball games................priceless! I just knew there was a reason we had to remain here.
Saturday, September 29, 2007
September Sunset
Over the course of this last week, Joy has made great improvement in several areas which on the surface seem slight however, they are significant steps in her rehabilitation. For starters, she has not used oxygen for a couple weeks even with exercise. She walked the long halls to the clinics and tests without the aid of a wheelchair. Additionally, she stopped using the rolling walker at rehab, walked a couple days holding hands with a PT and now walking almost a mile on her own.
Her back pain continues to be an obstacle and we should get the results of a recent MRI and CT Scan in clinic this next week. Lab results (blood, O2, vitals, pulmonary tests) remain generally stable but continue to adjust insulin to balance low blood sugar readings. We believe the quantity of meds and more particular Prograf (anti-rejection), is contributing to some personality issues but over time they should be resolved.
Her progress sometimes seems a little slow when compared to a couple of our new friends but we also know of several that have been back in the hospital 3-4 times and still on round the clock IV's at home and still on oxygen and greatly challenged at the rehabilitation center. And, we have learned of others that did not survive, so overall we are fine with being in the middle and continuing to progress. We met a 5 year survivor in clinic this week and although his road to recovery has not been perfect, he is quite happy to have this extra time and appreciates the time with his grand kids and traveling. It is quite alarming that on average, only 20% of the transplant patients are compliant with medicines and clinic follow-up appointments and this was the root cause of 3 out of 4 of the aforementioned deaths.
Surgery is schedule for October 31st but since this would interfere with her plans to go "trick or treating", we plan to ask her doctor to convince the surgeon to schedule it sooner. We know this surgery offers additional challenges so we want to proceed as soon as realistically possible and begin to learn how to eat all over again. An Illinois Thanksgiving?
Her back pain continues to be an obstacle and we should get the results of a recent MRI and CT Scan in clinic this next week. Lab results (blood, O2, vitals, pulmonary tests) remain generally stable but continue to adjust insulin to balance low blood sugar readings. We believe the quantity of meds and more particular Prograf (anti-rejection), is contributing to some personality issues but over time they should be resolved.
Her progress sometimes seems a little slow when compared to a couple of our new friends but we also know of several that have been back in the hospital 3-4 times and still on round the clock IV's at home and still on oxygen and greatly challenged at the rehabilitation center. And, we have learned of others that did not survive, so overall we are fine with being in the middle and continuing to progress. We met a 5 year survivor in clinic this week and although his road to recovery has not been perfect, he is quite happy to have this extra time and appreciates the time with his grand kids and traveling. It is quite alarming that on average, only 20% of the transplant patients are compliant with medicines and clinic follow-up appointments and this was the root cause of 3 out of 4 of the aforementioned deaths.
Surgery is schedule for October 31st but since this would interfere with her plans to go "trick or treating", we plan to ask her doctor to convince the surgeon to schedule it sooner. We know this surgery offers additional challenges so we want to proceed as soon as realistically possible and begin to learn how to eat all over again. An Illinois Thanksgiving?
Thursday, September 20, 2007
Update
We have not had any significant developments or changes this past week but we wanted to keep you current.
Joy had her clinic visit Tuesday and everything is progressing. O2 levels are up and lung function has increased slightly. She will be having CT Scans next week of her lungs and back. They are trying to determine the cause of her back pain. A nerve block may be indicated if warranted. She saw the stomach surgeon and we are waiting for a call to schedule a date for the surgery, probably the middle of October. Once she has recovered from that surgery, we should be able to return home. Otherwise she continues to exercise on a daily basis at the Center for Living, receive tube feedings 14 hours per night and has weekly clinic visits and tests.
We will keep you posted if anything new develops. Joy thanks everyone who remembered her birthday. She even received a must unusual gift of a camel (stuffed). She really enjoyed my sketch of a birthday cake but it went up in flames when I lit the candles. What a shame, it looked like it would have been delicious.
Joy had her clinic visit Tuesday and everything is progressing. O2 levels are up and lung function has increased slightly. She will be having CT Scans next week of her lungs and back. They are trying to determine the cause of her back pain. A nerve block may be indicated if warranted. She saw the stomach surgeon and we are waiting for a call to schedule a date for the surgery, probably the middle of October. Once she has recovered from that surgery, we should be able to return home. Otherwise she continues to exercise on a daily basis at the Center for Living, receive tube feedings 14 hours per night and has weekly clinic visits and tests.
We will keep you posted if anything new develops. Joy thanks everyone who remembered her birthday. She even received a must unusual gift of a camel (stuffed). She really enjoyed my sketch of a birthday cake but it went up in flames when I lit the candles. What a shame, it looked like it would have been delicious.
Thursday, September 13, 2007
Musings
Joy would like for me to share some of her thoughts with you. My daily trip to the mail box usually results in a bounty of get well cards for both Joy and me. After a prolonged illness, greeting cards usually begin to fall off after several weeks however, we have continued to receive numerous cards to add to our several hundred on a daily basis. Now, this is not a solicitation for more cards but a sincere acknowledgement of our appreciation for your extra ordinary concern for both of us. This includes family members, friends, church friends and high school buddies. Joy was especially touched to receive a blog comment from Bob Loghry several days ago. Bob and Joy began kindergarten together and traversed the Montpelier Public School System through the 12 th grade. It was such a thoughtful gesture and to realize how firm old friendships really are.
For, Stephen Bauer, just in case the great "The Ohio State University" wins the battle with your school, can we settle on dinner at Hamilton Lake next summer? This will be conditional upon your mother not eating the seafood platter next year.
People are beginning to inquire about our return to Chicago and the direct answer is that we do not know but, we are "kinda" hoping for the first of November but will disappointed if we are not there by Thanksgiving. Just to many bridges to cross to be more specific.
For, Stephen Bauer, just in case the great "The Ohio State University" wins the battle with your school, can we settle on dinner at Hamilton Lake next summer? This will be conditional upon your mother not eating the seafood platter next year.
People are beginning to inquire about our return to Chicago and the direct answer is that we do not know but, we are "kinda" hoping for the first of November but will disappointed if we are not there by Thanksgiving. Just to many bridges to cross to be more specific.
Friday, September 7, 2007
ER AGAIN !
To use a good southern phrase and we are in the south, "it just ain't fittin' " if we don't visit ER more than once or twice while we are here! After working most of the day yesterday (Thursday) trying to get Joy's feeding tube unclogged, we gave up and received the doctor's permission to use an alternate tube "one time only" to provide some evening nourishment with plans to visit ER by 7 AM today (Friday). The tube actually has a tube within a tube, one to the stomach (G)and the other to the intestines (J) which is the one that we normally use. The advice to arrive that early was perfect! There was no one in the waiting room when we arrived and got back to a room faster than getting to a hotel room. By the time we left almost 8 hours later, the waiting room was packed (easy 150+) and the nurses told me it was an exceptionally busy day with serious and numerous trauma patients. Four Life Flight patients as well.
So, after consulting with team doctors, they decided to perform surgery and remove the old tube and replace it with a new one and so far it is working. I wish I could say I was optimistic, but we will see. Joy tolerated the surgery and is recuperating at home. Due to this side trip, we both missed support group and her rehab today. It is so difficult to sustain any continuity in regards to rehab but hopefully, the tube issue is behind us. I think this may give them thought to accelerate the stomach surgery but, that is no miracle cure either. She will have to learn to eat all over again and for several, this has been difficult.
Unless we have more issues develop, the plan will be to rest up over the weekend and start all over with rehab on M-T-T-F with clinic on Wednesday.
And today, Nifong goes to jail, the lacrosse players file suit against the city of Durham for $30,000,000.00 and the city gets a new DA. Oh yah, Duke football will try to make it 1-21 against Virginia tomorrow. Not!
So, after consulting with team doctors, they decided to perform surgery and remove the old tube and replace it with a new one and so far it is working. I wish I could say I was optimistic, but we will see. Joy tolerated the surgery and is recuperating at home. Due to this side trip, we both missed support group and her rehab today. It is so difficult to sustain any continuity in regards to rehab but hopefully, the tube issue is behind us. I think this may give them thought to accelerate the stomach surgery but, that is no miracle cure either. She will have to learn to eat all over again and for several, this has been difficult.
Unless we have more issues develop, the plan will be to rest up over the weekend and start all over with rehab on M-T-T-F with clinic on Wednesday.
And today, Nifong goes to jail, the lacrosse players file suit against the city of Durham for $30,000,000.00 and the city gets a new DA. Oh yah, Duke football will try to make it 1-21 against Virginia tomorrow. Not!
Sunday, September 2, 2007
IT"S ME!
Sunday, September 2, 2007
You've heard from Wayne and the kids, but I have not been on the computer for several months now. The fact that I am writing, should indicate that I am slowly on my way back. The anti-rejection medication makes everyone have tremors, so it is difficult to type, but I wanted to say thank you to everyone who has written, sent cards, gifts, and letters of encouragement. The prayers have kept me going when I wanted to give up, so keep the prayer warriors at work!
Wayne has been the caregiver poster child. He is working harder than he did when he had a full time job, as this one never stops. I literally would not be here if it weren't for his loving and faithful care.
I will have a bronch and a surgical biopsy on Tuesday and will see the doctor on Wednesday. We all have to have blood tests, a chest x-ray and PFT (pulmonary function tests) and see one of the doctors once a week. After 3 or 4 months, it will be once a month, and eventually every three months. So they keep a close eye on us.
Hope you all have a safe Labor Day. I think we will take a ride this afternoon, and maybe drive to Cary where we use to live. Wayne attended a Duke Football game yesterday, but his presence didn't help, as they lost their 21st game in a row!!!! But, all is not lost, as they have the best graduation rate in division one. They post that at the games, since their record is so bad. Crystal came and sat with me.
Love and praise to all of you.
Joy
You've heard from Wayne and the kids, but I have not been on the computer for several months now. The fact that I am writing, should indicate that I am slowly on my way back. The anti-rejection medication makes everyone have tremors, so it is difficult to type, but I wanted to say thank you to everyone who has written, sent cards, gifts, and letters of encouragement. The prayers have kept me going when I wanted to give up, so keep the prayer warriors at work!
Wayne has been the caregiver poster child. He is working harder than he did when he had a full time job, as this one never stops. I literally would not be here if it weren't for his loving and faithful care.
I will have a bronch and a surgical biopsy on Tuesday and will see the doctor on Wednesday. We all have to have blood tests, a chest x-ray and PFT (pulmonary function tests) and see one of the doctors once a week. After 3 or 4 months, it will be once a month, and eventually every three months. So they keep a close eye on us.
Hope you all have a safe Labor Day. I think we will take a ride this afternoon, and maybe drive to Cary where we use to live. Wayne attended a Duke Football game yesterday, but his presence didn't help, as they lost their 21st game in a row!!!! But, all is not lost, as they have the best graduation rate in division one. They post that at the games, since their record is so bad. Crystal came and sat with me.
Love and praise to all of you.
Joy
Wednesday, August 29, 2007
Midweek Update
Joy continues to exhibit signs of improvement but nothing startling that would make headlines. She had possibly, her best day since 7/1 on Monday. Noting earth shattering, but completed her required exercises and was not completely wiped out when she got home.
Although it was a long 9 hour day with her lab work and CT Scan in the morning, surgeon appointment in mid afternoon and late afternoon with her primary transplant team physician, the day went well until we got home. Lab work showed some progress and the need to adjust a couple meds. Surgeon visit went well and validated that it was not an "IF" but a "WHEN" they would do the stomach surgery. We all agree that she needs to build more strength before another surgery. Her primary physician is still concerned that some signs of pneumonia remains and the biopsy cultures are not clinically conclusive at this time. She will have a bronc and lab studies next week and clinic appointment with primary physician the following day. Lung function has improved but remains low at 62% (I believe).
I was successful in getting the Rx for the Feeding Tube Declogging Kit that I mentioned earlier and not a moment to soon. Before giving Joy her evening meal tray last night, I attempted without success to flush the feeding tube. Crystal and I worked until after 10PM, sent Joy to bed without dinner with plans for me to go to Duke Pharmacy today (Wed) to fill the Rx. Finally, after another several hours this morning, I got the tube unclogged and fed her a delicious 2 hour lunch. Although I am diligent with the flushing schedule, it may require more water and more frequent flushes to an already volume intolerant patient. Such is life.
So, 2 more days of rehab, then Sat-Sun-Mon off, clinic Tue and Wed and back to rehab Thur and Fri. She has completed 7 of the required 23 days of rehab but we know she will need more than that, so the 23 is a moot point. She will continue rehab here until we head for Chicago and then resume an aggressive program there.
Happy Labor Day.
Although it was a long 9 hour day with her lab work and CT Scan in the morning, surgeon appointment in mid afternoon and late afternoon with her primary transplant team physician, the day went well until we got home. Lab work showed some progress and the need to adjust a couple meds. Surgeon visit went well and validated that it was not an "IF" but a "WHEN" they would do the stomach surgery. We all agree that she needs to build more strength before another surgery. Her primary physician is still concerned that some signs of pneumonia remains and the biopsy cultures are not clinically conclusive at this time. She will have a bronc and lab studies next week and clinic appointment with primary physician the following day. Lung function has improved but remains low at 62% (I believe).
I was successful in getting the Rx for the Feeding Tube Declogging Kit that I mentioned earlier and not a moment to soon. Before giving Joy her evening meal tray last night, I attempted without success to flush the feeding tube. Crystal and I worked until after 10PM, sent Joy to bed without dinner with plans for me to go to Duke Pharmacy today (Wed) to fill the Rx. Finally, after another several hours this morning, I got the tube unclogged and fed her a delicious 2 hour lunch. Although I am diligent with the flushing schedule, it may require more water and more frequent flushes to an already volume intolerant patient. Such is life.
So, 2 more days of rehab, then Sat-Sun-Mon off, clinic Tue and Wed and back to rehab Thur and Fri. She has completed 7 of the required 23 days of rehab but we know she will need more than that, so the 23 is a moot point. She will continue rehab here until we head for Chicago and then resume an aggressive program there.
Happy Labor Day.
Saturday, August 25, 2007
Our First Trip to ER
This is our 2nd full weekend at home since June 23rd and we will use this time to rest. More later.
Joy continues with the ups and downs of recovery, but showing very slow signs of improvement. Shortness of breath with minimal activity, nausea and continued use of oxygen linger on. Her lungs are working at 57% capacity so they have room for improvement but, they will never be 100%. She still has a couple spots on her right lung believed to be remnants of the pneumonia. No bronc or biopsy was deemed necessary since the absence of negative trends. Exercise at rehab is essential to improvement and Joy has be attentive every day except yesterday.
The stomach feeding tube that I have mentioned requires flushing with water four times a day in both ports and I have done that as required. However, on occasion and for whatever reason, this tiny tube decides to plug and then the work begins. It usually requires a nurse from the supplier of the machine and nourishment company to make a house call. On Thursday, my efforts along with her two hours failed so our only option was going to the Emergency Room. We anticipated a long wait and I was prepared with her pill box and insulin test kit, etc. but not prepared for the 15 hour waiting time. We arrived at 3 PM on Thursday and left after 6 AM on Friday morning, just in time to see the sun beginning to rise. Duke Emergency Room also serves the extended community with Life Flight Helicopters and a major Trauma Center and the waiting room is large and probably seats two hundred. It was packed! Finally, after no sleep, nothing to eat for either of us (Joy missed tube feed from 6PM to 8AM which is her normal time) blood sugar levels going down, out of pain and nausea medicine and general discomfort, they unplugged the tube and we went home. Their process is similar to what I do but they use two capsules of an enzyme dissolved in water and it resolves the issue quickly. Joy has required that "kit" twice during hospitalization. It is doubtful, but I am going to try to obtain this med to avoid ER in the future. Guaranteed, it will clog again!
So, once we were home, I hooked up Joy's feeding machine, got her settled and we both slept for a couple hours prior to next scheduled round of meds and insulin. She missed her first day of exercises at the Center for Living since we have been here and I can't blame her. Later in the morning after getting her settled in for a couple hours, I left her alone for the first time since discharge and returned to Duke to finish my last session of presenting the Caregivers Guide. The pool of potential caregivers is increasing and the attendance was good and the quality of my material was well received. A great feeling! Joy did well on her own (well yah, she slept all of the time) and that was a relief.
The 90+ degree weather didn't last long and the 100+ days have continued with sweltering humidity. But I know my Chicago family and friends won't feel sorry for us after enduring the storms and excessive rain and flooding in their areas. Flooding there, drought here.......go figure!
Next up is another scheduled clinic visit Tuesday and also a clinic visit with the doctor that will do the Nissen (stomach wrap surgery). Joy just can't wait to go back into the hospital for surgery and a few days stay. She is just so excited.
Joy continues with the ups and downs of recovery, but showing very slow signs of improvement. Shortness of breath with minimal activity, nausea and continued use of oxygen linger on. Her lungs are working at 57% capacity so they have room for improvement but, they will never be 100%. She still has a couple spots on her right lung believed to be remnants of the pneumonia. No bronc or biopsy was deemed necessary since the absence of negative trends. Exercise at rehab is essential to improvement and Joy has be attentive every day except yesterday.
The stomach feeding tube that I have mentioned requires flushing with water four times a day in both ports and I have done that as required. However, on occasion and for whatever reason, this tiny tube decides to plug and then the work begins. It usually requires a nurse from the supplier of the machine and nourishment company to make a house call. On Thursday, my efforts along with her two hours failed so our only option was going to the Emergency Room. We anticipated a long wait and I was prepared with her pill box and insulin test kit, etc. but not prepared for the 15 hour waiting time. We arrived at 3 PM on Thursday and left after 6 AM on Friday morning, just in time to see the sun beginning to rise. Duke Emergency Room also serves the extended community with Life Flight Helicopters and a major Trauma Center and the waiting room is large and probably seats two hundred. It was packed! Finally, after no sleep, nothing to eat for either of us (Joy missed tube feed from 6PM to 8AM which is her normal time) blood sugar levels going down, out of pain and nausea medicine and general discomfort, they unplugged the tube and we went home. Their process is similar to what I do but they use two capsules of an enzyme dissolved in water and it resolves the issue quickly. Joy has required that "kit" twice during hospitalization. It is doubtful, but I am going to try to obtain this med to avoid ER in the future. Guaranteed, it will clog again!
So, once we were home, I hooked up Joy's feeding machine, got her settled and we both slept for a couple hours prior to next scheduled round of meds and insulin. She missed her first day of exercises at the Center for Living since we have been here and I can't blame her. Later in the morning after getting her settled in for a couple hours, I left her alone for the first time since discharge and returned to Duke to finish my last session of presenting the Caregivers Guide. The pool of potential caregivers is increasing and the attendance was good and the quality of my material was well received. A great feeling! Joy did well on her own (well yah, she slept all of the time) and that was a relief.
The 90+ degree weather didn't last long and the 100+ days have continued with sweltering humidity. But I know my Chicago family and friends won't feel sorry for us after enduring the storms and excessive rain and flooding in their areas. Flooding there, drought here.......go figure!
Next up is another scheduled clinic visit Tuesday and also a clinic visit with the doctor that will do the Nissen (stomach wrap surgery). Joy just can't wait to go back into the hospital for surgery and a few days stay. She is just so excited.
Saturday, August 18, 2007
A Cold Front Moving In
After several days of sweltering 112 degree heat index, we anticipate much cooler temperatures into the upper 90's, so we have that going for us.
The last couple of days, Joy has participated in daily rehab and completed all phases of the exercise program. Not a stellar performer, but since this is not a competition, it all counts toward recovery.
It feels so good not having to go somewhere today and tomorrow (Sat and Sun). This is our first full weekend at home since June 23rd. What a deal!
One of the highlights of her recovery has been the Food Cures book she received from her nephew Daniel Bauer. It was written by Joy Bauer and Dan requested the author to autograph it for Joy, which she did. So, it is from the real Joy Bauer to the real Joy Bauer. Kinda neat!
During my idle time while visiting Joy in the hospital last week, I continued to think about the overwhelming experience from her last discharge and homecoming. I felt this was something missing from the Support Group training and decided to be proactive and write a guide that would benefit others that follow. So, I put together my thoughts, prepared an outline and then a couple rough drafts (I alluded to this in my August 9th blog update). My presentation to the transplant social workers was received with praise and appreciation and with a little planning, this was the topic for this weeks Support Group. The questions were numerous and we only covered about a fourth of the material. Therefore, we plan to continue the topic next week until all the issues are covered. Going forward, they will incorporate this Caregiver Guide into their standard education process. It feels so good to know that this will better prepare future caregivers. Those days will still be overwhelming but they will be better prepared rather than it being a totally overwhelming surprise. If anyone is interested in a copy, send me your E-mail address and I will forward you the PowerPoint format presentation. It will be like reading a great novel, you won't be able to put it down. Not!
Well, with the 10AM items covered, it is almost Noon so I must now change hats and get back to my day job.
The last couple of days, Joy has participated in daily rehab and completed all phases of the exercise program. Not a stellar performer, but since this is not a competition, it all counts toward recovery.
It feels so good not having to go somewhere today and tomorrow (Sat and Sun). This is our first full weekend at home since June 23rd. What a deal!
One of the highlights of her recovery has been the Food Cures book she received from her nephew Daniel Bauer. It was written by Joy Bauer and Dan requested the author to autograph it for Joy, which she did. So, it is from the real Joy Bauer to the real Joy Bauer. Kinda neat!
During my idle time while visiting Joy in the hospital last week, I continued to think about the overwhelming experience from her last discharge and homecoming. I felt this was something missing from the Support Group training and decided to be proactive and write a guide that would benefit others that follow. So, I put together my thoughts, prepared an outline and then a couple rough drafts (I alluded to this in my August 9th blog update). My presentation to the transplant social workers was received with praise and appreciation and with a little planning, this was the topic for this weeks Support Group. The questions were numerous and we only covered about a fourth of the material. Therefore, we plan to continue the topic next week until all the issues are covered. Going forward, they will incorporate this Caregiver Guide into their standard education process. It feels so good to know that this will better prepare future caregivers. Those days will still be overwhelming but they will be better prepared rather than it being a totally overwhelming surprise. If anyone is interested in a copy, send me your E-mail address and I will forward you the PowerPoint format presentation. It will be like reading a great novel, you won't be able to put it down. Not!
Well, with the 10AM items covered, it is almost Noon so I must now change hats and get back to my day job.
Wednesday, August 15, 2007
Home Again II
Arrived back home after a 7:00 PM discharge and after setting up feed tube, replenishing the pill box, getting new Rx filled, revising my spreadsheets to accommodate the change in medications and times, unloading car and unpacking it is time to call it a night.
Joy not feeling that great but discharge was a viable option since she will receive the same course of treatment as she would receive in hospital. Rehab resumes tomorrow, clinic appointments next week and appointment with the physician to do the Nissen (stomach wrap surgery) a week from Tuesday. They want to move up the surgery as soon as realistically possible to minimize the complications she has been experiencing. She tolerated the endoscopy today and biopsies were sent to lab for analysis. Visual examination showed signs of a fungus type growth and acute inflammation. So, we will wait and see but until those results are known, they are treating her with the same drugs that they will probably use by anticipating the results.
Stay tuned tomorrow......................
Joy not feeling that great but discharge was a viable option since she will receive the same course of treatment as she would receive in hospital. Rehab resumes tomorrow, clinic appointments next week and appointment with the physician to do the Nissen (stomach wrap surgery) a week from Tuesday. They want to move up the surgery as soon as realistically possible to minimize the complications she has been experiencing. She tolerated the endoscopy today and biopsies were sent to lab for analysis. Visual examination showed signs of a fungus type growth and acute inflammation. So, we will wait and see but until those results are known, they are treating her with the same drugs that they will probably use by anticipating the results.
Stay tuned tomorrow......................
Tuesday, August 14, 2007
Just Another Day
It is difficult to write this blog without being terribly redundant, so I will do my best.
Nausea, headaches, limited O2. insulin up and down (low of 57---yikes) and just overall damn tired of being "sick" and not feeling well, represents the day. And it makes it worse knowing there is no light at the end of the tunnel SOON. No oncoming train, but just a long tunnel.
Best guess at this moment is that stomach acid reflux has caused or contributed to the inflamed airways and the sterile organized pneumonia (I can't define that one) and they are planning an endoscopy tomorrow morning. This is to further help diagnose her situation and also serves as a prerequisite to the Nissen (stomach wrap surgery). Her doctor plans to move that surgery up on the priority list with hopes that will alleviate many of her current problems. She has been taken off water and ice until that surgery is complete and proven successful. So, no food, no more water, no more ice chips and no more sugar-free hard candy until post surgery tests confirm she can tolerate liquids, purees, etc.
I have been told many, many times that you look forward to the blog and I want you all to know how much we look forward to your comments, cards, letters, emails and prayers. Thanks.
The Team is talking of release tomorrow, so we will wait and see but it doesn't make much difference, we are not going anywhere!
Nausea, headaches, limited O2. insulin up and down (low of 57---yikes) and just overall damn tired of being "sick" and not feeling well, represents the day. And it makes it worse knowing there is no light at the end of the tunnel SOON. No oncoming train, but just a long tunnel.
Best guess at this moment is that stomach acid reflux has caused or contributed to the inflamed airways and the sterile organized pneumonia (I can't define that one) and they are planning an endoscopy tomorrow morning. This is to further help diagnose her situation and also serves as a prerequisite to the Nissen (stomach wrap surgery). Her doctor plans to move that surgery up on the priority list with hopes that will alleviate many of her current problems. She has been taken off water and ice until that surgery is complete and proven successful. So, no food, no more water, no more ice chips and no more sugar-free hard candy until post surgery tests confirm she can tolerate liquids, purees, etc.
I have been told many, many times that you look forward to the blog and I want you all to know how much we look forward to your comments, cards, letters, emails and prayers. Thanks.
The Team is talking of release tomorrow, so we will wait and see but it doesn't make much difference, we are not going anywhere!
Monday, August 13, 2007
Not a Happy Camper Today
Camp was not fun today!
Joy's day started with nausea, headache and vomiting and exacerbated by fumes from wax and stripping the floors in adjacent hospital rooms. It gave me a headache as well. Then the doctor tells her the Organized Pneumonia is significant in both lungs and her esophagus is inflamed and he is not sure what is causing it. The biopsy has not yet isolated the strain. They suspicion ed it may be acid reflux and ordered a barium swallow test which did not show evidence of reflux. The doctor is perplexed.
Then we had some issues over getting a face mask quickly for her CPAP machine since they have determined that the BIPAP machine is no longer necessary. Since her doctor is taking a cautious approach to determining the cause of the pneumonia and inflammation, he has taken away her ice chips and sips of water except for sips to take meds. Then during her discussion with one of the Transplant Team doctors, they indicated it may take up to six months to get feeling better. Her primary care doctor told her he may send her home tomorrow depending upon how her next chest x-ray looks and neither of us are necessarily happy about that because she still does not feel well. Some times insurance requires the "treat'em and street'em" philosophy so this could be the underlying reason to hasten her stay. The doctor says he feels she is at the point where he can medicate her from home and see her in Clinic for monitoring.
So, this was not a good day. Joy is ready to leave camp against all medical advice.
She remains critical of her decision to have the lung transplant and absolutely has nothing good to say about Duke. I still cannot blame her for the first part. All of this and she still cannot eat or drink for at least a couple months, requires stomach surgery, more days of hospitalization and more recovery issues. But, what is done is done and I just hope she doesn't give up. That, I am not sure of. We didn't know what we didn't know, so we must proceed.
Remember Roseann Roseannadanna (Lisa Loopner played by Gilda Radner)? "It's always something Jane". Tomorrow will be something else.
Joy's day started with nausea, headache and vomiting and exacerbated by fumes from wax and stripping the floors in adjacent hospital rooms. It gave me a headache as well. Then the doctor tells her the Organized Pneumonia is significant in both lungs and her esophagus is inflamed and he is not sure what is causing it. The biopsy has not yet isolated the strain. They suspicion ed it may be acid reflux and ordered a barium swallow test which did not show evidence of reflux. The doctor is perplexed.
Then we had some issues over getting a face mask quickly for her CPAP machine since they have determined that the BIPAP machine is no longer necessary. Since her doctor is taking a cautious approach to determining the cause of the pneumonia and inflammation, he has taken away her ice chips and sips of water except for sips to take meds. Then during her discussion with one of the Transplant Team doctors, they indicated it may take up to six months to get feeling better. Her primary care doctor told her he may send her home tomorrow depending upon how her next chest x-ray looks and neither of us are necessarily happy about that because she still does not feel well. Some times insurance requires the "treat'em and street'em" philosophy so this could be the underlying reason to hasten her stay. The doctor says he feels she is at the point where he can medicate her from home and see her in Clinic for monitoring.
So, this was not a good day. Joy is ready to leave camp against all medical advice.
She remains critical of her decision to have the lung transplant and absolutely has nothing good to say about Duke. I still cannot blame her for the first part. All of this and she still cannot eat or drink for at least a couple months, requires stomach surgery, more days of hospitalization and more recovery issues. But, what is done is done and I just hope she doesn't give up. That, I am not sure of. We didn't know what we didn't know, so we must proceed.
Remember Roseann Roseannadanna (Lisa Loopner played by Gilda Radner)? "It's always something Jane". Tomorrow will be something else.
Sunday, August 12, 2007
Improvement Noted
After a little slower morning, Joy felt better throughout the afternoon but things like showering and walking are still a little tasking. She can tolerate those activities with minimal oxygen (2 liters per minute) and is improving each day. We walked a lot this afternoon and she did magnificent.
We do not yet know the exact strain of pneumonia she has and we are hopeful that additional lab results will be available tomorrow. Discharge day is unknown and they continue several antibiotic IV's, magnesium IV's, Chemotherapy IV's, tube feeding and of course the normal bowls of meds. She continues with a productive cough, which is good.
The nineth floor roof top helipad is directly across from her window so our entertainment for the day is watching the helicopters land and take off. Free and exciting entertainment!
We do not yet know the exact strain of pneumonia she has and we are hopeful that additional lab results will be available tomorrow. Discharge day is unknown and they continue several antibiotic IV's, magnesium IV's, Chemotherapy IV's, tube feeding and of course the normal bowls of meds. She continues with a productive cough, which is good.
The nineth floor roof top helipad is directly across from her window so our entertainment for the day is watching the helicopters land and take off. Free and exciting entertainment!
Saturday, August 11, 2007
Where Joy and Wayne Hang Out
Dear Friends and Family,
We thought you would like to see some pictures where Joy and Wayne spend their days. The picture of the top is what is known as Duke South. That is where most of her doctors appointments take place. The one below this is the front of the main hospital. We all have spent many days and nights walking through those revolving doors. Joy was on the third floor in the tall building to the right. She had a great view of the picnic area. Don't think she ever got to see it, but I can vouch for the fact it was very nice. I wanted to give Wayne the night off, so Catherine will be presenting the nightly blog posting. I know I do not write nearly as well as him, so I promise not to keep him from his duties for too long. Joy's day was not quite as good as yesterday. She had a headache most of the day and also experienced what we call quite a bit of "productive coughing." Translation: When they do a lung transplant, most if not all the nerves are cut eliminating ones ability to cough. You have to re-learn how to do that. Although the coughing can be contributed to her illness, it is a really good thing that she is able to do this. Overall she has some general fatigue, but was handling all her medications very well. There was no news on the type of strain that she has and is expected to stay in the hospital a few more days. The temperature in Raleigh has been about 105 with a heat index of about 112. Y'all stay cool down there, ya hear!!!! Well that is about it for today. Thank you for tuning in to Words Of Joy From Duke. Until next time, y'all stay cool where ever you are and GOD BLESS. Catherine
P.S. Call me silly, but I have found if I click on the picture, they will open up bigger in another window.
Friday, August 10, 2007
Pneumonia
Joy had another pretty good day which included some walking, resting and much needed sleep albeit hit and miss. You all know you do not come to the hospital to sleep.
The preliminary results from the biopsy indicate pneumonia and the doctor awaits further analysis to determine the exact strain. In the interim, they continue several antibiotics with plans to add additional meds when more lab results are known.
Hopefully, a few days of treatment will suffice and she can return home and back to rehab. She needs time to rebuild her strength and stamina prior to having the stomach surgery. The feeding tube is becoming sore but she is tolerating the "nothing to eat" program extremely well. She didn't know ice chips would taste so good. They removed stitches today from several sites but left the staples in her main incision, allowing for more time to heal. She is anxious to get those wire staples removed.
After talking to and coordinating information from three of our other transplant friends, I would say Joy's progress is on-track or slightly better than theirs. It is somewhat comforting for her to know that she is following a relatively common track although a rough experience at best.
Tomorrow is another day. Good night.
The preliminary results from the biopsy indicate pneumonia and the doctor awaits further analysis to determine the exact strain. In the interim, they continue several antibiotics with plans to add additional meds when more lab results are known.
Hopefully, a few days of treatment will suffice and she can return home and back to rehab. She needs time to rebuild her strength and stamina prior to having the stomach surgery. The feeding tube is becoming sore but she is tolerating the "nothing to eat" program extremely well. She didn't know ice chips would taste so good. They removed stitches today from several sites but left the staples in her main incision, allowing for more time to heal. She is anxious to get those wire staples removed.
After talking to and coordinating information from three of our other transplant friends, I would say Joy's progress is on-track or slightly better than theirs. It is somewhat comforting for her to know that she is following a relatively common track although a rough experience at best.
Tomorrow is another day. Good night.
Thursday, August 9, 2007
Joy Remains in the Hospital
Joy had a very restfull night and slept the best she has in weeks. Early this morning, she had a lung biopsy surgical procedure and has recovered nicely. They removed a considerable amount of fluid and are awaiting initial lab results for preliminary diagnosis. Infection and/or rejection are probable, but time will tell. Until those results are known and specific treatments are determined, they are giving her several antibiotic and rejection medicine IV's. They are letting her bedrest with 2 lpm O2. Depending upon her status tomorrow, we will probably start walking the halls and I am sure this will further reveal how well she can tolerate activity once again.
Length of stay is unknown and will depend upon diagnosis of the problem and subsequent treatment. She has done everything asked of her and once again, it is the doctors time to fix the problem so we can move on. And, we are confident they will.
I met with our social worker today to discuss the pre-discharge education and the overwhelming issues that confront the caregivers. She asked me to prepare a detailed presentation of our experiences along with my spreadsheets, charts, necessary durable medical equipment and detailed memos and she will use this in her future support group meetings. If time and scheduling allows, she will plan her agenda to cover this topic while we are still here. My desire is to better prepare and educate future caregivers to minimize the tremendous responsibilites that await them at home.
Length of stay is unknown and will depend upon diagnosis of the problem and subsequent treatment. She has done everything asked of her and once again, it is the doctors time to fix the problem so we can move on. And, we are confident they will.
I met with our social worker today to discuss the pre-discharge education and the overwhelming issues that confront the caregivers. She asked me to prepare a detailed presentation of our experiences along with my spreadsheets, charts, necessary durable medical equipment and detailed memos and she will use this in her future support group meetings. If time and scheduling allows, she will plan her agenda to cover this topic while we are still here. My desire is to better prepare and educate future caregivers to minimize the tremendous responsibilites that await them at home.
Wednesday, August 8, 2007
Back In The Hospital
All things considered, Joy had a reasonable day yesterday with excercise rehab and came home very exhausted, but as expected.
We awoke about 5' ish this morning with Joy experiencing extreme shortness of breath and difficulty breathing. We put her on O2 starting with 2 lpm and eventually increased that to 6 lpm when she de-saturated to 71%. She was somewhat stable then began an episode of considerable coughing (which is good) but this really took her breath away to the point she just couldn't breathe. Just as I was going to call 911, she began to slow down and I paged the Transplant Team and they suggested I bring her to the clinic for examination immediately. She was scheduled for an appointment tomorrow. They checked her over and quickly determined they must re-admit her but that the wait would be long today since the hospital was at 100% capacity. We arrived at the clinic about 11' ish and she got to her room at 7:30 PM tonight. Both of us are a little tired. I waited until they got the necessary histories, vitals, on-call physician visit, etc. and headed home for a little rest.
Very scary morning, for both of us.
Something that some of you that know Joy really well and know her love for Duke will be surprised, maybe shocked to learn that she hates the place and wishes she never heard of lung transplant. I could agree with her on the second part or at least for now. This is a very, very tough surgical process. But if we had not had it done and she didn't survive the year, then the decision would have been questionable. We continue to place her survival in the hands of the Duke Transplant Team and believe this problem can be fixed but selfishly, we want that accomplished sooner and without so much pain and discomfort. We saw one of our "new" lung transplant friends leaving today for home-home and his surgery was May 1st and he got along fairly well with only two re-admits for rejection.
My guess is that Joy has severe rejection despite the bunny medicine and the chemo IV she has taken. Bronc tomorrow (don't know if it will be biopsy--hope so) and some more tests, meds and stabilization. She has lost another 16 lbs since surgery on top of the weight she had to lose pre-transplant and is looking pretty good. Now, if she only felt that way.
Long day, good night.
We awoke about 5' ish this morning with Joy experiencing extreme shortness of breath and difficulty breathing. We put her on O2 starting with 2 lpm and eventually increased that to 6 lpm when she de-saturated to 71%. She was somewhat stable then began an episode of considerable coughing (which is good) but this really took her breath away to the point she just couldn't breathe. Just as I was going to call 911, she began to slow down and I paged the Transplant Team and they suggested I bring her to the clinic for examination immediately. She was scheduled for an appointment tomorrow. They checked her over and quickly determined they must re-admit her but that the wait would be long today since the hospital was at 100% capacity. We arrived at the clinic about 11' ish and she got to her room at 7:30 PM tonight. Both of us are a little tired. I waited until they got the necessary histories, vitals, on-call physician visit, etc. and headed home for a little rest.
Very scary morning, for both of us.
Something that some of you that know Joy really well and know her love for Duke will be surprised, maybe shocked to learn that she hates the place and wishes she never heard of lung transplant. I could agree with her on the second part or at least for now. This is a very, very tough surgical process. But if we had not had it done and she didn't survive the year, then the decision would have been questionable. We continue to place her survival in the hands of the Duke Transplant Team and believe this problem can be fixed but selfishly, we want that accomplished sooner and without so much pain and discomfort. We saw one of our "new" lung transplant friends leaving today for home-home and his surgery was May 1st and he got along fairly well with only two re-admits for rejection.
My guess is that Joy has severe rejection despite the bunny medicine and the chemo IV she has taken. Bronc tomorrow (don't know if it will be biopsy--hope so) and some more tests, meds and stabilization. She has lost another 16 lbs since surgery on top of the weight she had to lose pre-transplant and is looking pretty good. Now, if she only felt that way.
Long day, good night.
Monday, August 6, 2007
Rehab Day One
Joy had a two hour reassessment evaluation this morning at the Center for Living on Duke Campus and they will use this information to manage her exercise process over the coming weeks. We returned for a modified session this afternoon and she tolerated it better than she expected. Joy met a new pre-transplant candidate that started the process after Joy had surgery and he thought she was starting her rehab for the first time. She responded, " I am but this is my first day back after transplant". He was amazed and told her she looked better than a couple other recent tranplant patients that he had met. Hopefully, this will provide some inspiration to him. The only one that remains from Joy's original group is still awaiting a donor and has been on the Active list since February. She has been living here in temporary housing since that time, just like we are! Despite that, she is very positive and remains upbeat.
Although our daily schedule has not changed, we are finding ways to manage the process better and becoming more efficient. Other than providing Joy the supplies and equipment, she is doing the insulin testing and injections herself and Crystal is still coming each evening after work to administer the chemo therapy IV. This drug takes an hour or so to run so while Crystal stays with Joy to monitor the IV, I now use that time to run errands. While Joy was in rehab today, I stayed in the lobby in a big comfortable chair and even dozed off for a few moments. So there Laraine, I took a nap!
It is now 5:35PM and Joy is taking a well deserved nap but all good things must come to and end so I need to awaken her and serve her a gourmet meal and then Crystal can administer the chemo. What a fine life she leads, being waited on like this.
Although our daily schedule has not changed, we are finding ways to manage the process better and becoming more efficient. Other than providing Joy the supplies and equipment, she is doing the insulin testing and injections herself and Crystal is still coming each evening after work to administer the chemo therapy IV. This drug takes an hour or so to run so while Crystal stays with Joy to monitor the IV, I now use that time to run errands. While Joy was in rehab today, I stayed in the lobby in a big comfortable chair and even dozed off for a few moments. So there Laraine, I took a nap!
It is now 5:35PM and Joy is taking a well deserved nap but all good things must come to and end so I need to awaken her and serve her a gourmet meal and then Crystal can administer the chemo. What a fine life she leads, being waited on like this.
Saturday, August 4, 2007
A Look at Our Day
First of all, Joy is feeling better and gradually gaining strength. She wants to eat something or anything. Imagine that! She spends most of the day in the recliner and taking advantage of the weekend to rest prior to beginning her exercise routine at the Center of Living on Monday. We went to the clinic for blood draws and Pulmonary Function Test yesterday. She has a clinic appointment scheduled for this Thursday with various tests at 8:00 AM and then with a doctor at 1:00PM. A lot of hurry up and wait time with these appointments.
The kids have been great. In age order, Crystal lives locally and has been in and out throughout the process and has been a lot of help these last couple days......more later. Kevin lives in Houston and has flown back and forth several times and was a big help the day Joy was released from the hospital. Caroline lives about three hours away and has also been in and out and always willing to be here at a moments notice. Her planned visit this weekend changed with her daughter Kierra coming down with the stomach flu. Get well Kierra. Cathy and Kayce have been doing a great job with blog assistance, FedEx our mail and anything else we need from home, maintaining the house duties, sending letters/phone calls and caring for Kayce. So, we are well covered. Thanks a bunch!
This will be long but I want to document for you the requirements, emotions and anxieties that come from what is a typical day for us.
Thanks in part to the training from my good friend Super Dave Selke, I am using those experiences in organization and overall process management to help schedule and manage our day. I can't post the spreadsheets that I have developed here, but will try to give you a narrative description of those helpful tools.
Our day begins at 6:00AM for insulin testing, injection, flushing the feeding tube ports and one medication. Joy allows me time for coffee and a shower here. Then at 8:00AM, I do the vitals (BP, weight, O2 Sat, HR, temp, PFT and give her morning dose of Prograf (rejection med). Now I get to make the beds, laundry, collect all of the trash and disposables, update my logs and spreadsheets and assist Joy with ice, bathroom, walking, etc.. At Noon, I apply medicine to her incisions, flush the tube ports again, test/inject insulin and give her more meds. After these items are complete, Joy can rest and I glance at the computer a little and continue with other household chores and assist Joy with conveniences, heat packs, prepare a shopping list and try to fix something for lunch. The time slot from Noon to 5:00PM is designed to accommodate Joy's exercise time at the Center for Living (M-F). The 5:00PM consists of more incision care, tube flushes and a manually administered tube protein. At 6:00PM, we check the vitals again, administer more meds, test/inject insulin, flush her feed tube ports prior to setting up to begin her nightly tube feed nourishment, using the electric IV type pump. We also set up and begin the hour long chemo therapy IV drug (more about that later). Then at 9:00PM, she gets another insulin injection. At 10:00PM, we apply more med to her incision, flush the feed tube ports and give her another bowl of meds. Finally, at 11:30-Midnight she gets more meds and tests and injects more insulin, we get her breathing machine set up and insure she has things at arms reach and after an 18 hour day, we go to sleep.
We thought we were pretty well prepare with understanding and knowledge of the lung transplant surgery but ultimately, we had no idea!!!!!!!
We thought we were pretty well prepared with understanding and knowledge of the post transplant caregivers duties, but we (I) had no idea!!!!!!!!!!! Read on.
Now, let me whine a bit. For the last couple weeks, every single thing I mentioned earlier was exactly what the trained RN's did during the day for Joy and they even had techs to do vitals, assist with bathroom duties, picking up all of the disposable trash, bringing in supplies , getting ice / water for meds and assist in bathing her. The insulin injections, setting up feeding machine and consolidating all the required functions to build a schedule was damn near overwhelming. But late yesterday afternoon, the home health care provider brought out the machine, chemotherapy IV med along with the applicable supplies and began her in home training to administer this product. It was when she laid out a chucks pad on the table, the chemo drug, 8 syringes, special gloves and whatever else, I knew I was getting extremely nervous about this. Then she started the training...............be careful with this because it can cause this, you must turn this off first and then start this but then restart this before you do that or you will cause this and you can't do that................................About that time, Crystal walked through the door or I would have been totally overwhelmed. Period! Crystal completed the training and has agreed to come here every night after work to complete this process. This med will end on Aug. 15th and be supplemented with a new drug in tablet form. Fantastic!! Joy and I consider ourselves to be slightly above the average lay person in medical knowledge, but neither of us could have prepared for this. How a person (s) that possess limited medical knowledge could do all of this baffles me.
Joy is a good patient and has been used to better care than what I am giving her but we are making it work and it will get better as the days and months roll. It is no small wonder why the transplant patient and the caregivers are not provided with minute details of the process..................no one would go through it!
We will keep you posted with frequent blog updates but not necessarily every day. Something has "gotta" go.
Thanks for listening. Now I must get back to work.
Wayne, BN, MSN, PHD,MD, MSW, M-DIV, Critical Care
The kids have been great. In age order, Crystal lives locally and has been in and out throughout the process and has been a lot of help these last couple days......more later. Kevin lives in Houston and has flown back and forth several times and was a big help the day Joy was released from the hospital. Caroline lives about three hours away and has also been in and out and always willing to be here at a moments notice. Her planned visit this weekend changed with her daughter Kierra coming down with the stomach flu. Get well Kierra. Cathy and Kayce have been doing a great job with blog assistance, FedEx our mail and anything else we need from home, maintaining the house duties, sending letters/phone calls and caring for Kayce. So, we are well covered. Thanks a bunch!
This will be long but I want to document for you the requirements, emotions and anxieties that come from what is a typical day for us.
Thanks in part to the training from my good friend Super Dave Selke, I am using those experiences in organization and overall process management to help schedule and manage our day. I can't post the spreadsheets that I have developed here, but will try to give you a narrative description of those helpful tools.
Our day begins at 6:00AM for insulin testing, injection, flushing the feeding tube ports and one medication. Joy allows me time for coffee and a shower here. Then at 8:00AM, I do the vitals (BP, weight, O2 Sat, HR, temp, PFT and give her morning dose of Prograf (rejection med). Now I get to make the beds, laundry, collect all of the trash and disposables, update my logs and spreadsheets and assist Joy with ice, bathroom, walking, etc.. At Noon, I apply medicine to her incisions, flush the tube ports again, test/inject insulin and give her more meds. After these items are complete, Joy can rest and I glance at the computer a little and continue with other household chores and assist Joy with conveniences, heat packs, prepare a shopping list and try to fix something for lunch. The time slot from Noon to 5:00PM is designed to accommodate Joy's exercise time at the Center for Living (M-F). The 5:00PM consists of more incision care, tube flushes and a manually administered tube protein. At 6:00PM, we check the vitals again, administer more meds, test/inject insulin, flush her feed tube ports prior to setting up to begin her nightly tube feed nourishment, using the electric IV type pump. We also set up and begin the hour long chemo therapy IV drug (more about that later). Then at 9:00PM, she gets another insulin injection. At 10:00PM, we apply more med to her incision, flush the feed tube ports and give her another bowl of meds. Finally, at 11:30-Midnight she gets more meds and tests and injects more insulin, we get her breathing machine set up and insure she has things at arms reach and after an 18 hour day, we go to sleep.
We thought we were pretty well prepare with understanding and knowledge of the lung transplant surgery but ultimately, we had no idea!!!!!!!
We thought we were pretty well prepared with understanding and knowledge of the post transplant caregivers duties, but we (I) had no idea!!!!!!!!!!! Read on.
Now, let me whine a bit. For the last couple weeks, every single thing I mentioned earlier was exactly what the trained RN's did during the day for Joy and they even had techs to do vitals, assist with bathroom duties, picking up all of the disposable trash, bringing in supplies , getting ice / water for meds and assist in bathing her. The insulin injections, setting up feeding machine and consolidating all the required functions to build a schedule was damn near overwhelming. But late yesterday afternoon, the home health care provider brought out the machine, chemotherapy IV med along with the applicable supplies and began her in home training to administer this product. It was when she laid out a chucks pad on the table, the chemo drug, 8 syringes, special gloves and whatever else, I knew I was getting extremely nervous about this. Then she started the training...............be careful with this because it can cause this, you must turn this off first and then start this but then restart this before you do that or you will cause this and you can't do that................................About that time, Crystal walked through the door or I would have been totally overwhelmed. Period! Crystal completed the training and has agreed to come here every night after work to complete this process. This med will end on Aug. 15th and be supplemented with a new drug in tablet form. Fantastic!! Joy and I consider ourselves to be slightly above the average lay person in medical knowledge, but neither of us could have prepared for this. How a person (s) that possess limited medical knowledge could do all of this baffles me.
Joy is a good patient and has been used to better care than what I am giving her but we are making it work and it will get better as the days and months roll. It is no small wonder why the transplant patient and the caregivers are not provided with minute details of the process..................no one would go through it!
We will keep you posted with frequent blog updates but not necessarily every day. Something has "gotta" go.
Thanks for listening. Now I must get back to work.
Wayne, BN, MSN, PHD,MD, MSW, M-DIV, Critical Care
Thursday, August 2, 2007
SHE'S HOME
Dear friends and family,We wanted to let you all know that Joy was released from Duke and arrived "home" at 2:30 this afternoon. She enjoyed stepping out into the sunshine and the fresh air for the first time in a month. We thought you all would enjoy seeing this picture taken of her this morning. Thank you all again for all your kind words, thoughts, prayers and best wishes. You all played a huge part in why she is where she is today. I know she is going to sleep good tonight. God Bless, Catherine
Wednesday, August 1, 2007
Homebound
Joy was advised that she will be released from the hospital tomorrow.
Between the flurry of pre-release activity, Joy walked fourteen laps and would have been able to walk an additional four later tonight but was constricted by the nightly feeding tube and a couple last minute IV's. Ultimately, she could have made the ever elusive mile but we were satisfied knowing that it was within her grasp. She now has a new light weight walker added for stability and to carry O2, but we do not anticipate she will required the use of either for any extended period of time.
The day was almost overwhelming with scheduling and training for diabetes issues, home health care for feeding and new BiPap breathing machine, reviewing all the meds I purchased last night, getting new Rx for more meds and blood sugar testing, training on tube feeding and flushing those stomach tubes, wound care and probably more that I just can't remember. You just couldn't imagine what this day was like without being here. It was like learning to be an RN or Nurse Practitioner, all in a few fleeting hours. Thank God that Joy can participate in some of this. She gave herself two insulin injections today and performed admirably.
Tomorrow we start a new chapter. Coming home and getting settled in will be crazy and exhausting but once we get some routine and organization, I think we will be OK. She has a blood test appointment at the clinic on Friday, a doctor appointment at the clinic Tuesday which will encompass most of the day and Monday, she will be re-evaluated at the Center of Living Pepsico Building and begin the daily four hour exercise routine. She is so, so excited about that!
I picked up new meds tonight and last count was twenty-two daily meds consisting of sixty-two pills or doses.
Overall, the surgery expense will be about a half million dollars but her feeding tube will save on groceries for a couple months!
So, let's see what tomorrow brings.
Between the flurry of pre-release activity, Joy walked fourteen laps and would have been able to walk an additional four later tonight but was constricted by the nightly feeding tube and a couple last minute IV's. Ultimately, she could have made the ever elusive mile but we were satisfied knowing that it was within her grasp. She now has a new light weight walker added for stability and to carry O2, but we do not anticipate she will required the use of either for any extended period of time.
The day was almost overwhelming with scheduling and training for diabetes issues, home health care for feeding and new BiPap breathing machine, reviewing all the meds I purchased last night, getting new Rx for more meds and blood sugar testing, training on tube feeding and flushing those stomach tubes, wound care and probably more that I just can't remember. You just couldn't imagine what this day was like without being here. It was like learning to be an RN or Nurse Practitioner, all in a few fleeting hours. Thank God that Joy can participate in some of this. She gave herself two insulin injections today and performed admirably.
Tomorrow we start a new chapter. Coming home and getting settled in will be crazy and exhausting but once we get some routine and organization, I think we will be OK. She has a blood test appointment at the clinic on Friday, a doctor appointment at the clinic Tuesday which will encompass most of the day and Monday, she will be re-evaluated at the Center of Living Pepsico Building and begin the daily four hour exercise routine. She is so, so excited about that!
I picked up new meds tonight and last count was twenty-two daily meds consisting of sixty-two pills or doses.
Overall, the surgery expense will be about a half million dollars but her feeding tube will save on groceries for a couple months!
So, let's see what tomorrow brings.
Tuesday, July 31, 2007
An Afternoon of Progress
The chronic diarrhea continued throughout the night and morning hours and had her totally wiped out which limited her mobility. Finally in early afternoon, she received a med that helped and she pushed herself to walk four laps with Kevin and me. Then late afternoon, Joy walked for the first time without the aid of the walker. Kevin and I lightly supported her on each side and pulled the walker behind as a back up. We walked three laps before returning to bed for early evening feeding tube and another round of chemo.
The Transplant Coordinators and the pharmacist were in today to talk more about going home issues including meds and home health care products and services. They still plan to train Joy and me on the insulin monitoring and injections and also how to clean and administer nourishment for her stomach feeding tubes. One of the Transplant Team surgeons indicated he was considering her for release very soon once these loose ends are finalized.
Getting her home will be nice but, the thought of not having the security blanket of the doctor and nursing care available as it is in the hospital makes us both a little anxious. This will be a big adjustment to say the least.
We are most appreciative of your cards and letters and thank you again for your thoughtful consideration.
The Transplant Coordinators and the pharmacist were in today to talk more about going home issues including meds and home health care products and services. They still plan to train Joy and me on the insulin monitoring and injections and also how to clean and administer nourishment for her stomach feeding tubes. One of the Transplant Team surgeons indicated he was considering her for release very soon once these loose ends are finalized.
Getting her home will be nice but, the thought of not having the security blanket of the doctor and nursing care available as it is in the hospital makes us both a little anxious. This will be a big adjustment to say the least.
We are most appreciative of your cards and letters and thank you again for your thoughtful consideration.
Monday, July 30, 2007
Another Good Day
Joy continues to deal with chronic diarrhea, the cause of which is unknown and remains a concern. She feels a couple particular meds may be the root cause but the staff is looking into a resolution.
No bronc today and she had the final two drainage tubes removed which made her feel better. She is still using the bipap breathing assistance machine at night and continues to receive nourishment through her feeding tube 6PM to 9AM each night, until she returns for the stomach surgery. Surgical biopsy may be this week or next which will hopefully determine the effectiveness of her rejection therapy.
She walked with assistance and some O2 three separate times for total of ten laps. Blood sugar continues to fluctuate but within manageable range.
They are considering sending her home possibly later this week, depending upon the diarrhea diagnosis and treatment and how much she progresses with the walking.
A women that Joy met in rehab also awaiting transplant, received her lungs a couple weeks ago and although she is progressing, she anticipates being in the hospital another couple weeks. Interestingly, her husband had a heart attack which required by-pass surgery and is now in the same room with her. "Ya think it might have been stress induced" ??????
No bronc today and she had the final two drainage tubes removed which made her feel better. She is still using the bipap breathing assistance machine at night and continues to receive nourishment through her feeding tube 6PM to 9AM each night, until she returns for the stomach surgery. Surgical biopsy may be this week or next which will hopefully determine the effectiveness of her rejection therapy.
She walked with assistance and some O2 three separate times for total of ten laps. Blood sugar continues to fluctuate but within manageable range.
They are considering sending her home possibly later this week, depending upon the diarrhea diagnosis and treatment and how much she progresses with the walking.
A women that Joy met in rehab also awaiting transplant, received her lungs a couple weeks ago and although she is progressing, she anticipates being in the hospital another couple weeks. Interestingly, her husband had a heart attack which required by-pass surgery and is now in the same room with her. "Ya think it might have been stress induced" ??????
Sunday, July 29, 2007
Another Decent Day
Her day was very much like I described in the last two days except that her walking was limited to ten laps. She was a little dizzy and weak this morning which shortened her overall walk time. They are giving her two diuretics, one of which is Lasik (sp?) and the combination really pulls the fluids out of her but fortunately, she recovers around noon. The continued chemotherapy drug may be impacting the fatigue type issue as well. Overall, I think she is progressing without setbacks or snags.....................................at least for now.
We have talked about her short term, day by day, one step at a time goals with her intention to wean from the oxygen and then the walker. Ultimately, just walking with me by her side for moral support and also being there as a backup.
Tomorrow, will probably see the resumption of the bronc, more frequent doctor visits (as opposed to the weekend), going home education, pharmacist, insulin staff and I am sure I forgot something else.
We have talked about her short term, day by day, one step at a time goals with her intention to wean from the oxygen and then the walker. Ultimately, just walking with me by her side for moral support and also being there as a backup.
Tomorrow, will probably see the resumption of the bronc, more frequent doctor visits (as opposed to the weekend), going home education, pharmacist, insulin staff and I am sure I forgot something else.
Saturday, July 28, 2007
More Progress
Today's blog will be shorter since Joy's day consisted of routine meds and in room testing and walking, much like what I reported yesterday. She walked fourteen laps today (4200 ft) in three sessions which is progress. One doctor indicated that she may have her final two chest cavity drainage tubes removed tonight or tomorrow. He said the rejection is still a major concern and next weeks biopsy will give them a clearer picture.
Plans for tomorrow will be the same, walk, sit up, walk, sit up and walk. One day soon, they may "show her the door". She can't wait, other than having to start physical rehab at the Pepsico Bldg in the Duke Center for Living Complex.
Still several concerns, but making progress.
Plans for tomorrow will be the same, walk, sit up, walk, sit up and walk. One day soon, they may "show her the door". She can't wait, other than having to start physical rehab at the Pepsico Bldg in the Duke Center for Living Complex.
Still several concerns, but making progress.
Friday, July 27, 2007
Stable With Some Progress
A day without a bronc was a relief. They introduced a new med ganciclovir which is a chemotherapy infused drug to aid in the prevention of disease in solid organ transplant recipients. It appears she is tolerating it at this time. Additional x-rays and normal in room PFT tests, breathing treatments and daily bloodletting rounded out that portion of the day.
We are doing more "going home training" and the daily walking assistance has now been assigned to me. That first day at home will be a severe adjustment so we need to learn all we can. Since early morning meds must be taken at 8:00AM, I am afraid her days of sleeping in are over forever. And, any thoughts about turning in early at night must wait until she takes another bowl of meds at 10:00PM. Naps will be at a premium since other meds must be taken at Noon and 6:00PM. These times may be subject to change but that is her lifelong future. She walked eleven laps today (3300 ft) in three separate walks. She still uses the heavy duty walker, O2 and requires some assistance. She walked with sneakers today and after thirty days without shoes, it took a couple laps to adjust to the feel.
So, the goal continues to walk more, wean from O2 and my assistance. This will come and she is making progress. They have removed some more tubes which makes it easier to get in / out of bed, walk, bathroom breaks and make her feel more comfortable. No update on the day they plan on performing another biopsy to check on the rejection. We are hoping for progress since this is a major rejection and therefore the aggressive meds.
We are doing more "going home training" and the daily walking assistance has now been assigned to me. That first day at home will be a severe adjustment so we need to learn all we can. Since early morning meds must be taken at 8:00AM, I am afraid her days of sleeping in are over forever. And, any thoughts about turning in early at night must wait until she takes another bowl of meds at 10:00PM. Naps will be at a premium since other meds must be taken at Noon and 6:00PM. These times may be subject to change but that is her lifelong future. She walked eleven laps today (3300 ft) in three separate walks. She still uses the heavy duty walker, O2 and requires some assistance. She walked with sneakers today and after thirty days without shoes, it took a couple laps to adjust to the feel.
So, the goal continues to walk more, wean from O2 and my assistance. This will come and she is making progress. They have removed some more tubes which makes it easier to get in / out of bed, walk, bathroom breaks and make her feel more comfortable. No update on the day they plan on performing another biopsy to check on the rejection. We are hoping for progress since this is a major rejection and therefore the aggressive meds.
Thursday, July 26, 2007
Rougher Day
Throughout the morning and early afternoon hours, Joy was vomiting and experienced severe diarrhea which made her feel pretty exhausted. But, she still had to swallow the typical days meds, more IV's and the ever frequent bronc. Those issues subsided later in the afternoon and she slept for two to three hours before they awakened her to start the final round of the new rejection infusion. Other than the aforementioned issues, her doctor is frankly surprised that she has tolerated this med as well as she has. Later in afternoon, she had chest and abdominal x-rays and additional tests to insure the diarrhea is not the result of a new infection. Another biopsy is planned for next week. She is resting on room air a lot but still requires O2 for exercise.
By late evening, she felt somewhat better and completed a four lap walk which is a record. Although she has done six laps total previously, this was the first time she completed this many laps during one walk. Encouraging.
I am not aware of the plan for tomorrow but hopefully she will feel well enough to walk even more.
By late evening, she felt somewhat better and completed a four lap walk which is a record. Although she has done six laps total previously, this was the first time she completed this many laps during one walk. Encouraging.
I am not aware of the plan for tomorrow but hopefully she will feel well enough to walk even more.
Thank you everyone!!!
I wanted to extend my sincerest gratitude to all of you. Your love, encouragement & support towards my parents and our family has and will continue to be greatly appreciated. Since I started going to mom's appointments at Duke over a year and a half ago, sharp turns and surprises were always par for the course. We never knew what to expect and we never knew what they would hand my mom next. Well, like dad said, we could never imagine anything like this. Through out this entire process what has remained the most consistent is her determination and my dad's unwavering love and support for her. They both have been an inspiration to their children. Even on the worst day's, we all have remained strong and resolved to keep moving forward on this journey with her. With that said I thank each one of you for joining us on this ride. At least with Joy, we all knew it would always be a colorful ride. We are all very grateful for everything that you all have done for her.
Love,
Caroline
Love,
Caroline
Wednesday, July 25, 2007
Rejection
As I mentioned yesterday, the new major issue is rejection and while this is always a reality, this one is more significant than the doctors had anticipated. This is the same rejection issue mentioned several days ago and was not specifically identified until the results of the recent biopsy was available.
Joy tolerated the pre-meds and then the rejection med which was administered by IV during the night. This med mandated that vitals were taken every 15 minutes for the six hour duration of the infusion. Not ideal for a restful nights sleep.
After a couple hours to recover from this, she walked three good laps and had to return to the chair and subsequently the bed to prepare for todays pre-meds and a four hour dose of the rejection med. The med as Joy puts it, comes from the Easter Bunny. Look on the internet for anti-thymocyte globulin rabbit and you will see why. Anyone want a dose of this knowing the potential side effects? Fortunately, Joy seems to be tolerating this at the present time and BP has remained stable with the support of dopimine.
We expect the same routine over the next three days and hope she can still continue some walking.
Joy tolerated the pre-meds and then the rejection med which was administered by IV during the night. This med mandated that vitals were taken every 15 minutes for the six hour duration of the infusion. Not ideal for a restful nights sleep.
After a couple hours to recover from this, she walked three good laps and had to return to the chair and subsequently the bed to prepare for todays pre-meds and a four hour dose of the rejection med. The med as Joy puts it, comes from the Easter Bunny. Look on the internet for anti-thymocyte globulin rabbit and you will see why. Anyone want a dose of this knowing the potential side effects? Fortunately, Joy seems to be tolerating this at the present time and BP has remained stable with the support of dopimine.
We expect the same routine over the next three days and hope she can still continue some walking.
Tuesday, July 24, 2007
Another Good Day, Well Sort Of
Joy had a restful night without incident and walked three laps in Acute Care before walking to her new room in the Step Down Unit. Once she settled in there, we went for a three lap walk for a total of six laps today (1800 feet) and she seemed to tolerate it quite well. She still requires O2 for walking. Her voice is getting closer to normal and she does not get out of breath talking like she used to. I am wondering how her now talking better benefits me? That was a joke! She was able to sleep another three hours this afternoon so hopefully she can begin catching up, little by little.
I was thinking on the way home tonight, how best I could caution you to not be overly optimistic about her progress without sounding negative or pesimistic. Well, here is the best way to explain what I am talking about when I say this thing can turn on a dime!
Joy called me about 9PM tonight to say the doctor that does her broncs each day came in and she was joking with him about having to do another, twice in the same day. He said he was there to talk about something very serious. The preliminary results from yesterdays biopsy came back and showed a "real funky" (his words) rejection that they would not have known about without the biopsy. Apparently quite rare. This he said, may explain why she has not progressed as well as anticipated, which has baffled the doctors recently. He said the med they need to give her have serious side effects and requires several other IV meds prior to taking the rejection medication to balance the effects. BP becoming unstable, dizzyness and nausea are just some of the side effects. She will begin taking these meds tonight.
I have received inquiries about flowers or plants for Joy and nothing has changed from my very early blog stating that lung transplant patients cannot tolerate these and may be the case for months and months to come. So Joy has asked me to write in this blog that anyone wishing to do something like that should purchase and donate some school supplies for a needy child. We sincerely continue to appreciate your cards, emails and blog updates and thank you so much for your interest in riding along with us.
So, I don't know right now if these meds will require the type of monitoring they do in Acute Care or if she can remain in Step Down. And, how much impact this will have on her progress / set back time is not know at this time. She is taking this like a champ and as with everything else, she does not complain and knows to expect infection and rejection at any time during the rest of her natural life.
Will keep you posted tomorrow night. Thanks for listening.
I was thinking on the way home tonight, how best I could caution you to not be overly optimistic about her progress without sounding negative or pesimistic. Well, here is the best way to explain what I am talking about when I say this thing can turn on a dime!
Joy called me about 9PM tonight to say the doctor that does her broncs each day came in and she was joking with him about having to do another, twice in the same day. He said he was there to talk about something very serious. The preliminary results from yesterdays biopsy came back and showed a "real funky" (his words) rejection that they would not have known about without the biopsy. Apparently quite rare. This he said, may explain why she has not progressed as well as anticipated, which has baffled the doctors recently. He said the med they need to give her have serious side effects and requires several other IV meds prior to taking the rejection medication to balance the effects. BP becoming unstable, dizzyness and nausea are just some of the side effects. She will begin taking these meds tonight.
I have received inquiries about flowers or plants for Joy and nothing has changed from my very early blog stating that lung transplant patients cannot tolerate these and may be the case for months and months to come. So Joy has asked me to write in this blog that anyone wishing to do something like that should purchase and donate some school supplies for a needy child. We sincerely continue to appreciate your cards, emails and blog updates and thank you so much for your interest in riding along with us.
So, I don't know right now if these meds will require the type of monitoring they do in Acute Care or if she can remain in Step Down. And, how much impact this will have on her progress / set back time is not know at this time. She is taking this like a champ and as with everything else, she does not complain and knows to expect infection and rejection at any time during the rest of her natural life.
Will keep you posted tomorrow night. Thanks for listening.
Monday, July 23, 2007
Another Good Day
Joy had a fairly restful night and after the morning ritual of tubes in, tubes out, x-rays, meds and blood for testing, she asked to go for a walk. Although we stayed in the Acute Care Unit, her distance was equivilent to one lap in the Step Down Unit. After sitting in a chair and before anticipating the surgical team to arrive for the biopsy, she walked a full lap which includes a couple hallways outside of the Acute Care Unit. She has found that constant coaching and talking helps to distract her so we are perfecting that together. And, and, and she did all of this with only a couple stops (standing, not sitting)and without the backup of someone pulling a chair behind her, just in case. Fantastic progress.
Several of the RN's have told her that anxiety has presented in 100% of the lung transplant patients they have cared for and Joy's progress is very typical and should not be compared to others progress or any other type of surgery including heart by-pass and heart transplant.
The biopsy, which is a more involved surgical procedure was completed today and the extracted fluid and tissue looked pretty good and the preliminary results may be available tomorrow afternoon. Pneunomia is still present but abaiting. If the biopsy shows rejection, they can treat that with additional meds.
She wanted me to thank each of you again for your cards, letters, e-mails, blog messages, prayers and whatever else. She really appreciates it.
Possibly, depending upon overnight stability and her continued mobility, she may be moved back to the Step Down Unit tomorrow. And, her goal is to be out of the hospital this weekend. She may just pull this off.
Several of the RN's have told her that anxiety has presented in 100% of the lung transplant patients they have cared for and Joy's progress is very typical and should not be compared to others progress or any other type of surgery including heart by-pass and heart transplant.
The biopsy, which is a more involved surgical procedure was completed today and the extracted fluid and tissue looked pretty good and the preliminary results may be available tomorrow afternoon. Pneunomia is still present but abaiting. If the biopsy shows rejection, they can treat that with additional meds.
She wanted me to thank each of you again for your cards, letters, e-mails, blog messages, prayers and whatever else. She really appreciates it.
Possibly, depending upon overnight stability and her continued mobility, she may be moved back to the Step Down Unit tomorrow. And, her goal is to be out of the hospital this weekend. She may just pull this off.
Sunday, July 22, 2007
A Better Day
Other than a few anxious moments in the middle of the night, Joy's numbers stabilized throughout the day and into the evening. More CT Scans, x-rays, bronc, meds, three units of blood, oxygen and otherwise resting was the course for the day. They removed the SWAN (wire type tube in her neck to her heart) but retained all of the IV's and blood gas line.
Her RN got her to sit up in bed, transfer to sit in a chair for awhile and then Joy walked about sixty feet. They did not press her to do more. Slow and easy. A definate restart and very positive morale booster for her. Anxiety issues seemed minimal. She slept for about four hours late today which may be a record, post surgery.
I got to spend a lot of time with her and presented all of the cards she has received. She is most appreciative of your support and thoughtfullness. As I have stated previously, this blog site and e-mails will not be available to her until she is released to come home, but I give her daily updates.
The Team's "focus" is leaning toward a "hidden" infection or rejection as evidenced by a "spot" of interest on one of her lungs. They will perform a biopsy of that spot tomorrow but the results are not expected for a couple days.
Her spirits have regenerated and hopefully she will continue to show improvement tomorrow. We want to get back on the three forward one step back routine. She has really hung in there under some tough circumstances.
Her RN got her to sit up in bed, transfer to sit in a chair for awhile and then Joy walked about sixty feet. They did not press her to do more. Slow and easy. A definate restart and very positive morale booster for her. Anxiety issues seemed minimal. She slept for about four hours late today which may be a record, post surgery.
I got to spend a lot of time with her and presented all of the cards she has received. She is most appreciative of your support and thoughtfullness. As I have stated previously, this blog site and e-mails will not be available to her until she is released to come home, but I give her daily updates.
The Team's "focus" is leaning toward a "hidden" infection or rejection as evidenced by a "spot" of interest on one of her lungs. They will perform a biopsy of that spot tomorrow but the results are not expected for a couple days.
Her spirits have regenerated and hopefully she will continue to show improvement tomorrow. We want to get back on the three forward one step back routine. She has really hung in there under some tough circumstances.
Saturday, July 21, 2007
A Day For Stabilization
The BP's diastolic dropping into the 40's, created sufficient concern to return her to the Acute Care Unit to better monitor and diagnose the dizzyness and short breath issue.
Once again, she has more tubes in her than an old radio including a painful wire type catheter inserted in her neck which leads to and monitors blood flow in her heart. Numerous blood tests, echo card, dopelar heart check and x-rays have not yet revealed anything of concern, at least that we are aware of. They want to rule out a heart attack and I am not aware whether that has been excluded or not.
Her plan for the day was merely to stabilize and diagnose. Overall, her numbers have somewhat stabilized with the addition of IV's and other meds. Her demeanor was good and engaged in conversation between drifting snoozes. She asked about cards that many of you have sent and I will take these to her tomorrow.
So, she is still critical (the reason she is in Acute Care) but stable and the plan for tomorrow will be to wean her off some of the meds that are assisting with her BP and see how that goes. Anxiety issues were minimal but we must keep in mind that she was not up walking or having any activity.
Once again, she has more tubes in her than an old radio including a painful wire type catheter inserted in her neck which leads to and monitors blood flow in her heart. Numerous blood tests, echo card, dopelar heart check and x-rays have not yet revealed anything of concern, at least that we are aware of. They want to rule out a heart attack and I am not aware whether that has been excluded or not.
Her plan for the day was merely to stabilize and diagnose. Overall, her numbers have somewhat stabilized with the addition of IV's and other meds. Her demeanor was good and engaged in conversation between drifting snoozes. She asked about cards that many of you have sent and I will take these to her tomorrow.
So, she is still critical (the reason she is in Acute Care) but stable and the plan for tomorrow will be to wean her off some of the meds that are assisting with her BP and see how that goes. Anxiety issues were minimal but we must keep in mind that she was not up walking or having any activity.
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