Not going to relist.

[KraigG]

Had a dual (kidney/pancreas) transplant over 21 years ago. I was only on dialysis for two months back in 1990.

Had a medical mistake in 1998, and lost the pancreas (after a couple of years of trying to retain it) in 2001. A few years later, I was informed my creatinine was increasing, and I better get ready to go on dialysis.

Turned out one of my high school buddies was now a transplant surgeon at a major hospital in Chicago. I was living in Southern California, but was originally from Chicago. Good thing, right?

Went through all the usual stuff to get on the list in Chicago. Testing, procedures, more testing. At one point, the surgical team told me I had to live within two hours of the center, and there was no way I was going to get to Chicago from LA. So I sold my CA house, and moved.

Living in Chicago, now time for more tests. And more procedures. A few nights in the hospital. I'm on the "pre" list now. Just a couple more procedures, and I'm on it. By this time, over 2 1/2 years have gone by.

Now I'm on dialysis. 3 days a week, 3 1/2 hours each night. 4th shift. The center gives me a list of other hospitals in the area doing transplants. Wow, that's a lot! Back in 1990, there were only a couple. So I go to an "informational" seminar at the biggest one. The one that does the most.

They're really pushing living donors. I mean REALLY. Like you're at a used car dealer, and they're trying to sell you the last remaining Yugo on the lot. They put some numbers up  on the board. Average time to keep a transplant from a cadaveric donor: 5 - 10 years. From a living donor? 10 - 15 years.

Wow, I think, that's not very long. My kidney lasted 21 years. I was using old school anti rejection meds. And Prednisone. I kinda figured that in 21 years, they would have made great inroads in medicine to keep the transplanted organs, for what, forever?

I have no living donors to ask. My 21 year old daughter volunteered, but I need another pancreas too. So, do I wait year for new organs, only to  lose them (possibly) after 5 years? I've been through a transplant before. Don't want to go through all that for maybe a good 5 years. Thanks, but no thanks.

Ya know, this dialysis isn't so bad after all. 3 nights a week, I go in at 7-8 pm. My days are free, and what else am I going to do at that time of night anyway? Watch TV? My center has pretty nice TV sets. With DirecTV, no less. And a nice recliner. I love dialysis.

[MooseMom]

I'm listed at one of the major Chicago hospitals, and my experience has been very different.  No seminars or required classes or anything like that.  Why has it taken so long to list you?  Why two and a half years?  That seems absurd!

My center certainly hasn't pushed living donation like yours has.  I'm sure yours is trying to keep the cadaveric waiting list from growing so fast.  For everyone who has a living donor, there is an extra cadaveric organ for someone who does not.

What time do you leave your dialysis clinic at night?  Do most clinics have an 8:00PM shift?

If you are happy with the status quo, that's terrific.  Can't say that I blame you for not wanting to go for another transplant, especially if they are leading you to believe it won't last very long, which is really rather cruel, not to say inaccurate.  I know people who had living donors but still experienced loss of the new kidney in less than five years.  It's a crap shoot, it seems.

Wait a minute...I've just looked at your previous posts and have seen that you are going to Rush.  That's where I'm listed.  Did they tell you there's only an 18 month wait?  Geez, they told me 3-5 years, and according to the people that keep these sorts of stats, that's about right for the Chicago area...45 months is the mean waiting time for Rush.

I guess your past history makes your listing more complicated.  But, 2 1/2 years?  Sounds like they're stringing you along.

[KraigG]

Yeah, I'm giving up on Rush. I've had THREE transplant coodinators in the last 2 1/2 years, and the current one takes weeks to return calls. Oh, yeah, my buddy the surgeon? He transferred to St Louis a few months back. Now the head guy only wants to do kidney, not kidney/pancreas.

I think they're all too focused on the new building. And the average wait time for a kidney/pancreas at Rush is 11.8 months. IF one can get on the list!

[okarol]

In Los Angeles the wait is 10 years for a kidney, I wonder what it is for kidney/pancreas?
It's nice that you have a choice and if it ain't broke (dialysis) then don't fix it.
If it were me - I'd still get listed. You can always turn down a kidney offer, but you're still active if a kidney/pancreas comes along.
21 years - that's a long time - you sure got lucky!

[KraigG]

Yeah, Karol, I got lucky - but the thing is, at the time, I didn't think I was lucky. Back in 1990, no one ever mentioned the time that you were going to keep your organs. Guess they didn't have that much data at that time.

Since diabetes caused the kidneys to fail, I figured if I had kept the pancreas, the kidney would have lasted forever. Now I'm not so sure.

[okarol]

We have been told that while the immunos help keep the kidney, they also damage it - so who knows what might have happened?
Rerun had a similar experience, hopefully she will post here. She had a kidney for 19 years and never imagined she'd lose it.

[KraigG]

Well, I was young when I got my organs. I had a wife, a family, a  business. The wife has passed on, the kids are in another state, and I'm living (barely) on disability. Things aren't so rosy when you get older.

I'd like the organs I was going to use go to someone with a life ahead of them. I had my time in the sun.

[Chris]

I use to worry about the numbers they told me, but really it's just a guideline or for a way to show importance of taking meds. So far I have had my k/p tx from Northwestern for over 1 years with just slight bumps in the road, but we all react differently.
 
When I had mine in 2000, there was 4 centers to go to atleast just for kidney and Loyola didn't do any pancreas tx's yet and I didn't want to be their first and looked at the other 3 at the time. Now there are more transplant centers in the general Chicago area, but still only 2 in Southern Illinois.
 
If you can, listen tomore centers who have seminars with take home information. UofI at the time did not do seminars and just told me about their program after they examed me with nthing to take home to make me think about hem and I was suppose to ask any questions right there and then, so ot a good impression of them.
 
It's always good to have as much information to make a decision that will benefit you the most.

[winefred]

I know how you feel, I am going on 27 years with my transplant.  I had my first one in WI. I am now in TN and feel like they are pushing me to get on the list. Creat is 3.5 and and GRF is 14. I don't have any support here so they won't list me. I feel relief because I really don't want to go on the list. Maybe I will change my mind once I start dialysis but for now I don't want to go through another transplant. I too am on old school meds and haven't had any problems until a couple years ago. So far I am holding my own and I feel fine. I had a living related donor the first time but have no one to donate now so I agree, is it really worth it? I had a good run and who knows maybe I can make it to 30 years without dialysis.

[ToddB0130]

KraigG --- Welcome to the board.  If I read your profile correctly,  you're 53 .......... and you're saying you've 'had your time in the sun'   I think there's plenty of time left for you !!!  I am happy you're doing well in dialysis (I've found a center nearby where I will be able to sleep during my dialsys when I start) ............. but I hope you'll get yourself listed as well and consider a transplant if one ever gets offered.   It's a good idea to have as many options open as possible.  Good Luck.

[MooseMom]

Hey, I'm 54, and no one is going to tell me that I've "had my time in the sun," thank you very much.

[Katonsdad]

I was transplanted 12 yrs ago. This last  October the Kidney abounded ship . but tha pancres is still going.
I will be back on the list as soon as possible.   Prefer my couch to the chairs and needles.

If it takes so long to get the call and you dont really mind . might as well get listed   . Sorta goves you something to look forward to/
If the pancreas goes , get listed for both again.

Katonsdad

[KraigG]

Moosey, (may I call you that? )

It was a big effort when I got my transplant. It's not for the faint-of-heart. I had a pretty big support group back then, which I don't have now. If you have a large family that will be there for you, take you back to the hospital every other day after you get back home for a few weeks, or months, then great for you. But I no longer have that support.
Dialysis is easy to drive to and from. It's 2 miles from my house. I need a more stress-free life.

[MooseMom]

Moosey, (may I call you that? )

Why, of course!

It was a big effort when I got my transplant. It's not for the faint-of-heart. I had a pretty big support group back then, which I don't have now. If you have a large family that will be there for you, take you back to the hospital every other day after you get back home for a few weeks, or months, then great for you. But I no longer have that support.
Dialysis is easy to drive to and from. It's 2 miles from my house. I need a more stress-free life.

I understand your reasoning entirely.  We all have to make our choices based upon what kind of life we envision for ourselves.  I'm all for doing whatever you have to do to reduce stress levels!

[KraigG]

I miss the pancreas more than I miss the kidney. Needles every day (I don't have any needles on dialysis), watching the diet real close, blood sugars being too high or too low, it's a mess.

But doctors don't want to do a pancreas after a transplant. So I get a new kidney. So what? With the diabetes, I have the same condition that caused the loss of the kidney in the first place. I don't want to be a regular visitor to the transplant center.

My first transplant, unless you were under 60, no transplant for you. (From the Transplant Nazi)

[bette1]

I think the decision weather or not to go for a second transplant is a personal one.  Getting a transplant is hard, and there is no guarantee that it will work.  If dialysis is working for you now I would keep doing it. 

If you change your mind later, or the situation changes, the list will still be there. 

After my first transplant failed it took me a while to get back on the list.  I had to be mentally ready for the whole process and to be sure I wanted to take the risk again.