Getting ever closer
First I must apologize.
I’ve been involved in the “Mapping Mortality” project for most of the past year and had little time to update my “Dave’s Kidney” blog. And I hope you did have a chance to read the “Mapping Mortality” series.
But in the meantime, especially in recent months, a lot has happened to me while waiting to be summoned to the UPMC’s Thomas L. Starzl Transplant Institute for a kidney and pancreas transplant. The kidney transplant is necessary to resolve problems I’ve developed as a result of having type 1 diabetes for 44 years, while the pancras transplant will cure my diabetes.
Yes, I’m anxious.
The prospects of curing two serious illnesses with one operation — and, of course, plenty of follow-up care and a regimen of immunosuppressant medications for the rest of my life — continues to amaze me as I patiently await that big call from UPMC.
I’ve already had plenty of practice with these calls.
For 13 months now, I’ve been on the transplant list. And I’ve been called to the transplant center four times without ever receiving said transplants.
The most recent occurred Saturday evening.
I was watching the Winter Classic hockey game and had just told my wife Suellen that they must have forgotten about me. Of course, I know that awaiting a transplant involves chance and patience. The donor must be young because the pancreas has to be high quality. It cannot be fatty, scarred or damaged in any way.
My first call for a transplant occurred last April, but the pancreas ultimately had to be rejected. The donor was a 52-year-old Michigan woman who suffered a fatal fall down her basement steps. Unfortunately, her pancreas bore the effects of age. UPMC rejected the pancreas. So I went home.
Then on Oct. 20, I was called in for the double transplant but was not at the top of the list. As a standby I was told I could rise to the top. But after seven hours at the hospital, I was told to go home.
Exactly one month later, Nov. 20, I was called in again only to be trumped by another candidate. Good for that person. I could only feel happy that someone experienced a transplant and prospects of better health. I returned home that day without any additional organs.
Which makes me wonder whether I’ll gain a few pounds from the weight of the new organs? Now there’s an excuse for weight gain.
Then a call came in at 9 p.m. Saturday, and the UPMC official told me I was sixth on the list but likely to move up. Be ready, she said. She also told me I was UPMC’s top candidate, so if UPMC got the organs from the 24 year old who had died from head trauma received in an auto accident, I would get the transplants.
That is, if the organs were good quality, and if my antigen levels did not negatively interact with the donor’s.
They wanted me at the hospital by midnight.
Quick bath. Fast packing. Final snack. Loving goodbye to pet dogs, Cricket and Nutmeg, and black cat, Myrtle. Off to the races.
We got to UPMC Presbyterian precisely at midnight and by 12:15 I was in my room at UPMC Montefiore, where the transplants were scheduled to take place about 8 a.m. I underwent a blood draw (14 vials), an EKG, a chest x-ray, exam by a doctor, urinalysis, questions, pokes and scans, all in preparation for the transplants. In the meantime, somewhere in Virginia, doctors were “harvesting” the organs, which were then flown to Pittsburgh.
I slept between visits from nurses and doctors, who provided updates and proceeded with transplant preparations.
But at long last, a doctor entered the room about 6:45 a.m. and awakened me with a start to announce that the pancreas, alas, had to be rejected. Too fatty. The deceased donor had been addicted to painkillers and was on methadone and also had been a regular marijuana smoker. Perhaps, and I’m only speculating here, the munchies from pot smoking caused the fatty pancreas.
“You can go home,” the doctor said.
Darn. Fourth time and no organs.
Understand that I am patient. I am understanding of the process. I do not get mad. Actually I find the process to be interesting. I am not the least bit upset by having to spend seven hours at the hospital without results. I am willing to pay my transplant dues.
You have to play this game to get the organs.
But timing now is looming important. My kidney function has been gradually deteriorating. Soon I will need to begin dialysis, so I’m fighting the clock.
It is a common thought in my mind: Which will come first, the transplants or dialysis? I’d say it’s 50-50 at this point.
Also, it’s a strange thing to wish for a combined kidney-pancreas transplant because someone young must die for it to happen. No one can hope for that. You can only hope that if a tragic death does occur, just maybe that person will have compatible blood type and tissue. You must understand, at least from a distance, that such a horrible tragedy can have a good consequence by providing organs for multiple people needing transplants -- heart, lungs, intestines, liver, kidney, pancreas, corneas. It’s the classic case of making the best of a very bad situation..
So every time the phone rings, my heart leaps.
Is it UPMC?
And do they have a kidney and quality pancreas with my name on it?
Right now I’m staring at the phone.
I’ve been involved in the “Mapping Mortality” project for most of the past year and had little time to update my “Dave’s Kidney” blog. And I hope you did have a chance to read the “Mapping Mortality” series.
But in the meantime, especially in recent months, a lot has happened to me while waiting to be summoned to the UPMC’s Thomas L. Starzl Transplant Institute for a kidney and pancreas transplant. The kidney transplant is necessary to resolve problems I’ve developed as a result of having type 1 diabetes for 44 years, while the pancras transplant will cure my diabetes.
Yes, I’m anxious.
The prospects of curing two serious illnesses with one operation — and, of course, plenty of follow-up care and a regimen of immunosuppressant medications for the rest of my life — continues to amaze me as I patiently await that big call from UPMC.
I’ve already had plenty of practice with these calls.
For 13 months now, I’ve been on the transplant list. And I’ve been called to the transplant center four times without ever receiving said transplants.
The most recent occurred Saturday evening.
I was watching the Winter Classic hockey game and had just told my wife Suellen that they must have forgotten about me. Of course, I know that awaiting a transplant involves chance and patience. The donor must be young because the pancreas has to be high quality. It cannot be fatty, scarred or damaged in any way.
My first call for a transplant occurred last April, but the pancreas ultimately had to be rejected. The donor was a 52-year-old Michigan woman who suffered a fatal fall down her basement steps. Unfortunately, her pancreas bore the effects of age. UPMC rejected the pancreas. So I went home.
Then on Oct. 20, I was called in for the double transplant but was not at the top of the list. As a standby I was told I could rise to the top. But after seven hours at the hospital, I was told to go home.
Exactly one month later, Nov. 20, I was called in again only to be trumped by another candidate. Good for that person. I could only feel happy that someone experienced a transplant and prospects of better health. I returned home that day without any additional organs.
Which makes me wonder whether I’ll gain a few pounds from the weight of the new organs? Now there’s an excuse for weight gain.
Then a call came in at 9 p.m. Saturday, and the UPMC official told me I was sixth on the list but likely to move up. Be ready, she said. She also told me I was UPMC’s top candidate, so if UPMC got the organs from the 24 year old who had died from head trauma received in an auto accident, I would get the transplants.
That is, if the organs were good quality, and if my antigen levels did not negatively interact with the donor’s.
They wanted me at the hospital by midnight.
Quick bath. Fast packing. Final snack. Loving goodbye to pet dogs, Cricket and Nutmeg, and black cat, Myrtle. Off to the races.
We got to UPMC Presbyterian precisely at midnight and by 12:15 I was in my room at UPMC Montefiore, where the transplants were scheduled to take place about 8 a.m. I underwent a blood draw (14 vials), an EKG, a chest x-ray, exam by a doctor, urinalysis, questions, pokes and scans, all in preparation for the transplants. In the meantime, somewhere in Virginia, doctors were “harvesting” the organs, which were then flown to Pittsburgh.
I slept between visits from nurses and doctors, who provided updates and proceeded with transplant preparations.
But at long last, a doctor entered the room about 6:45 a.m. and awakened me with a start to announce that the pancreas, alas, had to be rejected. Too fatty. The deceased donor had been addicted to painkillers and was on methadone and also had been a regular marijuana smoker. Perhaps, and I’m only speculating here, the munchies from pot smoking caused the fatty pancreas.
“You can go home,” the doctor said.
Darn. Fourth time and no organs.
Understand that I am patient. I am understanding of the process. I do not get mad. Actually I find the process to be interesting. I am not the least bit upset by having to spend seven hours at the hospital without results. I am willing to pay my transplant dues.
You have to play this game to get the organs.
But timing now is looming important. My kidney function has been gradually deteriorating. Soon I will need to begin dialysis, so I’m fighting the clock.
It is a common thought in my mind: Which will come first, the transplants or dialysis? I’d say it’s 50-50 at this point.
Also, it’s a strange thing to wish for a combined kidney-pancreas transplant because someone young must die for it to happen. No one can hope for that. You can only hope that if a tragic death does occur, just maybe that person will have compatible blood type and tissue. You must understand, at least from a distance, that such a horrible tragedy can have a good consequence by providing organs for multiple people needing transplants -- heart, lungs, intestines, liver, kidney, pancreas, corneas. It’s the classic case of making the best of a very bad situation..
So every time the phone rings, my heart leaps.
Is it UPMC?
And do they have a kidney and quality pancreas with my name on it?
Right now I’m staring at the phone.