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.
Wednesday, October 31, 2007
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.
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