I have had several requests to update the blog regarding Joy and although I am reluctant to do so for the same reasons, I will do so and try to be brief.
She has been in the hospital locally several times since I last wrote and has had surgeries, numerous tests and procedures ALL to no avail.
Severe abdominal / stomach pain continues along with constant nausea and vomiting or dry heaves after eating ANYTHING and any amount.
She awaits a nerve block procedure to diagnose and possibly address the pain issue but it is difficult to be optimistic.
Joy said that will be her last procedure / test / surgery and she has stopped her daily vitals monitoring and spirometry testing. I don't know how this will resolve, but I can't blame her and fortunately she is mentally alert enough to make those decisions. Our next SCHEDULED trip to Duke is in June but several friends have taken that as a positive sign of progress. When we last visited Duke, Joy insisted that she was not coming back for at least six months regardless, so it was her decision not theirs. Time will tell if we return at all. We will see.
Tuesday, February 10, 2009
Thursday, November 13, 2008
Good News, Bad News and Terrible News
I am becoming tired of writing this blog because there is never much of anything positive to report and I do not see any change forthcoming to alter that view.
However, Kayce is now home from the hospital after being treated for Pancreatitis. She was one sick young women and of course once again, we were not here for her. She is doing fine and catching up on finals and homework.
While we were still in NC, our good friend Doug Hill (wife Cookie) suffered a massive heart attack just after a brief visit to the Center For Living Facility. Doug's transplant was Sept. 2006 and hasn't had a good day since. I talked to Cookie about an hour after 911 took him to the ER and understood his condition to be serious. I immediately went to the ER and was met by a social worker that told me his condition was extremely grave. I stayed with her for about four hours and went back the next day but Doug's condition remained the same. I have mentioned in this blog previously about Doug and Cookie and value their friendship tremendously. I had a long chat with Doug when they invited me over for dinner while Joy was in the hospital. He was showing signs of improvement. But Doug never regained consciousness.
Doug has died. He too, had IPF like Joy and has been sick for about four years the worst of which was the last two. There has to be a special place for the likes of Doug and Cookie Hill.
Joy had a miserable trip back. We were home for about 2 hours when I took Joy to her local doctor to examine her incision area which was inflamed and painful. The doctor sent her immediately to ER and she now remains in 100% isolation suspected of having the MRSA infection. Her compromised immune system is hampering their treatment options. They opened her incision and installed a vacuum pump to aid in the healing process. They plan to give her two units of blood tonight.
She has been searching for a good reason to cancel the December Duke appointments with the surgeon, transplant clinic, endocrinologist and treatment for her back. She may have just found one.
However, Kayce is now home from the hospital after being treated for Pancreatitis. She was one sick young women and of course once again, we were not here for her. She is doing fine and catching up on finals and homework.
While we were still in NC, our good friend Doug Hill (wife Cookie) suffered a massive heart attack just after a brief visit to the Center For Living Facility. Doug's transplant was Sept. 2006 and hasn't had a good day since. I talked to Cookie about an hour after 911 took him to the ER and understood his condition to be serious. I immediately went to the ER and was met by a social worker that told me his condition was extremely grave. I stayed with her for about four hours and went back the next day but Doug's condition remained the same. I have mentioned in this blog previously about Doug and Cookie and value their friendship tremendously. I had a long chat with Doug when they invited me over for dinner while Joy was in the hospital. He was showing signs of improvement. But Doug never regained consciousness.
Doug has died. He too, had IPF like Joy and has been sick for about four years the worst of which was the last two. There has to be a special place for the likes of Doug and Cookie Hill.
Joy had a miserable trip back. We were home for about 2 hours when I took Joy to her local doctor to examine her incision area which was inflamed and painful. The doctor sent her immediately to ER and she now remains in 100% isolation suspected of having the MRSA infection. Her compromised immune system is hampering their treatment options. They opened her incision and installed a vacuum pump to aid in the healing process. They plan to give her two units of blood tonight.
She has been searching for a good reason to cancel the December Duke appointments with the surgeon, transplant clinic, endocrinologist and treatment for her back. She may have just found one.
Tuesday, November 4, 2008
When Will It Ever End
As if we didn't have enough concerns, Cathy had to take Kayce to the emergency room for severe abdominal pain and nausea and she was subsequently transferred by ambulance to another hospital more suitable for diagnosis and treatment for teens. Some improvement noted but definate diagnosis TBD. We feel so bad to be so far away but Cathy is keeping us updated frequently.
Joy was discharged yesterday so she is trying to recover at our hotel apartment sufficient to make the 893 mile drive home. Other than getting staples removed in two weeks and blood labs Friday she has clinic appointments later this month and several in early December but at this point, she is tired of being stuck, poked, cut and dealing with the multitude of doctors so those trips and appointments are in jeopardy. I can't blame her.
When will it ever end?
Joy was discharged yesterday so she is trying to recover at our hotel apartment sufficient to make the 893 mile drive home. Other than getting staples removed in two weeks and blood labs Friday she has clinic appointments later this month and several in early December but at this point, she is tired of being stuck, poked, cut and dealing with the multitude of doctors so those trips and appointments are in jeopardy. I can't blame her.
When will it ever end?
Friday, October 31, 2008
Surgery Update (Edited update Friday PM)
Joy continues to struggle (showing some improvement). We almost lost her Wednesday night (Doctors words, not mine).
She had AFIB yesterday morning (131-152 heart rate) but a combination of meds brought heart rate back to normal. Awaiting results of several tests that she had early this morning (between midnight and 2 AM) checking for PE (blood clots) which "may" have triggered AFIB. (Tests were negative and no obvious blood clots). Mobility is crucial and pain issues plus the AFIB have limited her desire (marked improvement today with walking). A little crackle in her lungs is present and should go away with mobility as well as O2 decline ( showing some improvement). She has been terribly disoriented (medicines) but improved sufficient for me to leave about 3AM today (showing improvement today). Very, very weak. Will see what tomorrow brings.
MRI did not show any new fractures but reveals several protruding disks which may account for her back pain. (Specialist has isolated area of concern and may be able to resolve with epidural at a future date when pain from stomach surgery has subsided).
She is on clear diet (now full liquid) and finally taking some (all) meds orally. Nausea is a constant but dry heaves have not returned but she is eating very little so we will wait and see.
She had AFIB yesterday morning (131-152 heart rate) but a combination of meds brought heart rate back to normal. Awaiting results of several tests that she had early this morning (between midnight and 2 AM) checking for PE (blood clots) which "may" have triggered AFIB. (Tests were negative and no obvious blood clots). Mobility is crucial and pain issues plus the AFIB have limited her desire (marked improvement today with walking). A little crackle in her lungs is present and should go away with mobility as well as O2 decline ( showing some improvement). She has been terribly disoriented (medicines) but improved sufficient for me to leave about 3AM today (showing improvement today). Very, very weak. Will see what tomorrow brings.
MRI did not show any new fractures but reveals several protruding disks which may account for her back pain. (Specialist has isolated area of concern and may be able to resolve with epidural at a future date when pain from stomach surgery has subsided).
She is on clear diet (now full liquid) and finally taking some (all) meds orally. Nausea is a constant but dry heaves have not returned but she is eating very little so we will wait and see.
Tuesday, October 28, 2008
Surgery Complete
The four (4) hour plus surgery is complete.
She was in ICU after surgery for about five (5) hours so I did not see her until shortly before midnight last night and stayed for a brief moment and came back to rest. Very long day.
She was very uncomfortable and in a lot of pain as you would expect after a lengthy stomach area surgery. Surgery went OK but no way of knowing for several days if this resolved this issue or not. Somewhat alert but "in and out" of it.
Back pain will still be an issue and hopefully I can learn today if the recent MRI showed another fracture.
Later....................WB
She was in ICU after surgery for about five (5) hours so I did not see her until shortly before midnight last night and stayed for a brief moment and came back to rest. Very long day.
She was very uncomfortable and in a lot of pain as you would expect after a lengthy stomach area surgery. Surgery went OK but no way of knowing for several days if this resolved this issue or not. Somewhat alert but "in and out" of it.
Back pain will still be an issue and hopefully I can learn today if the recent MRI showed another fracture.
Later....................WB
Friday, October 24, 2008
Duke Visit Update
Results of today's MRI have not been released so we do not know if Joy has another fracture or not. She is still betting that she has another one based upon pain level.
The Transplant Team physician feels they have exhausted all means to treat her stomach issues with medicines and surgery remains the best option. They deferred Joy to the stomach surgeon and we met with him yesterday. He really "pushed some buttons" and was able to schedule the stomach reconstruction surgery for this coming Monday afternoon. It will require several days of hospitalization and offers a 50/50 chance of successfully correcting the nausea / vomiting issues. Several transplant patients have required this surgery for similar issues so the situation is not unique to Joy. The exact reasons why these patients have motility issues are not clear but the theory is that it is from trauma to the muscles especially in the esophagus and stomach.
Their are seven transplant patients (or caregivers) at our hotel and some of the stories are pretty unfortunate. One women had severe circulation issues and has had a foot amputated and several toes from the other and she just learned that see is facing more amputation. Another man is still in the hospital six months after transplant fighting severe infections. Another 35 year old did pretty good and going home after only three months here. Then we just learned one of our other friends has Stage 3 rejection and returning here for treatment. A very, very tough surgery but each of them are glad to be alive.
And, I was successful in obtaining tickets (free for the women's) to a sold out Duke men's and women's basketball game this weekend so that will fill both afternoons.
So a lot of action from Durham and hopefully we are making progress. We will still have to return in early December for several clinic appointments.
Remember to vote. Early and often.
Stay tuned.
The Transplant Team physician feels they have exhausted all means to treat her stomach issues with medicines and surgery remains the best option. They deferred Joy to the stomach surgeon and we met with him yesterday. He really "pushed some buttons" and was able to schedule the stomach reconstruction surgery for this coming Monday afternoon. It will require several days of hospitalization and offers a 50/50 chance of successfully correcting the nausea / vomiting issues. Several transplant patients have required this surgery for similar issues so the situation is not unique to Joy. The exact reasons why these patients have motility issues are not clear but the theory is that it is from trauma to the muscles especially in the esophagus and stomach.
Their are seven transplant patients (or caregivers) at our hotel and some of the stories are pretty unfortunate. One women had severe circulation issues and has had a foot amputated and several toes from the other and she just learned that see is facing more amputation. Another man is still in the hospital six months after transplant fighting severe infections. Another 35 year old did pretty good and going home after only three months here. Then we just learned one of our other friends has Stage 3 rejection and returning here for treatment. A very, very tough surgery but each of them are glad to be alive.
And, I was successful in obtaining tickets (free for the women's) to a sold out Duke men's and women's basketball game this weekend so that will fill both afternoons.
So a lot of action from Durham and hopefully we are making progress. We will still have to return in early December for several clinic appointments.
Remember to vote. Early and often.
Stay tuned.
Tuesday, October 14, 2008
Very Brief Update
Back pain intensifies with probable new compression fracture. Nausea / vomiting a daily routine. Very limited activity and outings limited to necessities. Recent eye exam revealed cataract surgery necessary to correct vision therefore the Sarah Palin style glasses will do her no good, even if Sarah wins the election.
But, we're off to our second home AGAIN this weekend and we will see what gems of treatment and encouragement they can muster this time. Then, we are already scheduled for early December excursion. Ain't gonna go back in November no matter what!
But, we're off to our second home AGAIN this weekend and we will see what gems of treatment and encouragement they can muster this time. Then, we are already scheduled for early December excursion. Ain't gonna go back in November no matter what!
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