Kidney/Pancreas transplant

[justagirl2325]

Anyone here the recipient of a Kidney/Pancreas transplant?

We are going to meet the Transplant coordinator next week finally  and our home-hemo nurse is encouraging him to get on this list.  He should qualify as he has terrible Type 1 diabetes and the wait list is substantially shorter 2-3 years vs. 5-10 years for kidney here.

[justagirl2325]

So I'm guessing no one is. 

He has decided to go for it and get listed for "Simultaneous Kidney Pancreas" transplant, or SKP for short.  At December 31, 2013 there were 105 people on the SKP wait list, and 44 were transplanted that year.  Compare that to 3,277 on the kidney alone wait list with only 705 transplanted.

I must admit I was a bit upset as we were told he could do a kidney transplant with a live donor (like me if I was a match) and then stay on list for pancreas transplant later.  But he's not willing to go there.  So we wait and hope the road to his SKP won't be too long.  When they put him on the list they backdate it to the day he started dialysis which is a year tomorrow.

Had a stress test this afternoon.  I'm not sure of all the tests that will be required.  The hospital said they would mail us a booklet and start scheduling tests.  When the call comes we will have to travel to Toronto (they arrange that as time is of the essence) then we are on our own.  We would have to stay in the area until medically cleared (4-8 weeks).  She said to have fund at the ready of anywhere from $2 to $10K dollars to cover expenses.

[Deanne]

It might be that no one responded yet because it seems like quite a few transplant recipients only pop in once in a while after transplant. I think it usually just means they're too busy living normal lives again. 

I hope you don't have to wait too long! It sounds like your wait will be fairly short since you need both.

[MooseMom]

I know of only one IHD member who has had a kidney/pancreas tx, and I haven't seen him post here for a long while. 

I hope you didn't feel ignored.  I would have replied, but I've had only a renal tx, so I don't think I have much to offer you.

I  don't blame him for wanting to get it "all done at once".  It's major surgery, and to have to go there twice is a big ask.

Best of luck to you both!  Please keep us posted on his testing/results!

[Hootie]

Thought I would give a response according to what we were told at Emory (GA) Hospital. My wife was hoping for the combination kidney and pancreas since she is a very long time Type 1 diabetic. The transplant surgeon basically told us that the combination surgery was extremely complex and they had backed off doing as many as they had done in the past. The pancreas is a much more delicate organ than the kidney and its long term success rate in transplant is not as good as a kidney only. The pancreas will typically fail before the kidney does over the long term. Kidney only surgery is not near as complex and the kidney is a much tougher organ. What makes the pancreas part of the surgery complex is the location of the pancreas and rework of the ducts into the stomach and intestines. The surgery is much longer and recovery is also significantly longer and more complex with the medical folks monitoring two organs. He said that this surgery is usually for those who are very brittle diabetic and cannot control their blood sugar levels regardless of what they do. Although he did not say it directly he also insinuated that it was people who are younger and can withstand the tougher surgery. My wife is 61 and a type 1 for 49 years. However, she is on the Minimed Medtronics insulin pump and is well under blood sugar control. I will add that friend introduced us to a person who was poorly controlled with his BS and he had the combination surgery. He feels it was the greatest thing he has ever done. He is about 4 years in now still going strong running his car wash and other businesses. He was 52 when he had his surgery. His waiting time was short at about six months.

Our story is on the kidney only waiting list for about 6 months and I am being tested for the living donor program and half way through that process.

My thoughts are to ask all the questions of the medical people and come to your own conclusions on what is best for you.

[justagirl2325]

Interesting, thanks for the info. 

We are moving along here with an echocardiogram scheduled for August 2 and some ultrasounds on September 29 (speed of light with universal health care).

[justagirl2325]

So he has a couple more tests scheduled for next week (Sept 29 and 30) and from what I can gleam with the little information they have given us, I think that's all the testing.  Will have to push them after that to get him on the list officially I guess.

Meanwhile, I went to a private clinic and had my health and kidneys checked (just in case he gets tired of waiting for kidney/pancreas transplant). My kidneys are perfect and ready to go lol.  I don't know if I'm a match though.

[coravh]

So he has a couple more tests scheduled for next week (Sept 29 and 30) and from what I can gleam with the little information they have given us, I think that's all the testing.  Will have to push them after that to get him on the list officially I guess.

Meanwhile, I went to a private clinic and had my health and kidneys checked (just in case he gets tired of waiting for kidney/pancreas transplant). My kidneys are perfect and ready to go lol.  I don't know if I'm a match though.

A thousand apologies! I didn't see this post over the summer. I am what they call a PAK (pancreas after kidney). I got my kidney from my wonderful cousin in 2002, and my pancreas in '08. There were other reasons for the delay. Obviously, my first priority was to get off dialysis. I am still doing quite well - kidney ticking along and blood sugars normal, no matter what I eat. I actually found the later pancreas transplant easier than the kidney. If you have any questions, just fire them at me. Best of luck to you two.

[justagirl2325]

After the September tests were done we waited for further instructions.  He had to go to the clinic at hospital for dialysis (has one session there every two months for labs to see how home-hemo is working). 

His nurse contacted the coordinator only to be told that at September 30 all the tests have been done but no one has reviewed the results yet.  Yeah free health care in Canada.

So now we will call weekly with a "have you checked yet" chant. 

On a separate note, a locum doc was in for this clinic and asked him if he had a kidney donor, he pointed at me and said "she's willing to donate" but he quickly explained I wasn't tested for a match as he was trying for the PAK.  The doc told him straight out if you have a willing donor take the kidney now and be listed for a pancreas transplant later.  That years of dialysis waiting for both organs (when you have a willing donor) is not worth the stress dialysis puts on your body. 

He wasn't even willing to discuss that with me.   

[PrimeTimer]

Sorry you're having such a stressful day. I'd be aggravated, too. Now is the time to be kind to yourself, whether it is treating yourself to a favorite treat, book, nap or alone time just do it and let go for a little while, if not a day. Focus on feeling every muscle in your body relax, beginning with your toes and go up from there. Chores and whatnot can wait, even when it seems they can't. Either way, break the anxiety by picturing other things in your head.

[justagirl2325]

I'm not really sure when, how, or why he changed his mind but he has agreed that the hospital can test me to see if I'm a match for him.  Perhaps it was the nine day near death stint in the hospital from the infected chest catheter.  Perhaps it was the fact that he was walking around with blood clots from the catheter unknowingly that put his life at risk.  It doesn't matter.

Here in Canada I could not find out if I'm a match for him without him giving the ok to check. 

So I will pass on my application to be a donor on Monday and see where it goes.  All I know so far is I have no antibodies, we're the same blood type (O positive) and my GFR is 112. 

He is still not officially listed but that should be soon.

He is still holding out hope for the simultaneous kidney/pancreas transplant but at least we will know our options.

[cassandra]

Good luck to the both of you

     

Love, Cas

[Chris]

I have had a skp (simultaneous kidney and pancreas) transplant for over 15 years now. At times it has been a rocky road, but still better than dialysis and hypoglycemia unawareness.

[PrimeTimer]

I have had a skp (simultaneous kidney and pancreas) transplant for over 15 years now. At times it has been a rocky road, but still better than dialysis and hypoglycemia unawareness.

This is awesome to read! This will certainly bring hope to those awaiting the same transplant. Congratulations to YOU and your 15 years!   

[Chris]

There are people who have had it longer than me without another transplant.


It may not always be an easy road, but worth it for most people.

[PrimeTimer]

There are people who have had it longer than me without another transplant.


It may not always be an easy road, but worth it for most people.

Wondering if you or anyone for that matter can answer this: When someone needs both a kidney AND a pancreas transplant, are they listed that way (for a double transplant) and must both organs become available to a recipient simultaneously together? Please forgive my ignorance on the subject.   

[PrimeTimer]

I went back and reread the previous posts and now realize they more or less answered my questions. Oops...sorry....  

[justagirl2325]

Here we are in April 2016 and he's still not officially listed on the transplant list.  He finally lost it at his last clinic appointment and the doctor in charge told the transplant co-ordinator to get moving already.  Apparently she left work crying that day...sorry her life is hard and I can appreciate that she's busy but then don't tell us in January that we should hear something from Toronto in three weeks only for us to find out in April she hasn't sent it to them yet.

She called me and I had an appointment Friday and they took the first required blood samples from me to check me.  I know I'm healthy and I know we're the same blood type but he still hasn't said "yes I'll take your kidney" just yes to check if its possible.   

[cassandra]

Pleased to hear your hubby finally got angry (at the right people) about still not being listed because of some paid person who ....#####....
Very sad to hear that he still not is listed too. I really hate people doing jobs they just shouldn't. The misery they cause....

The second part about why your hubby hasn't jumped on your offer yet? Maybe it's so incredibly difficult for him to have someone he loves going through pain and uncertainty for him makes him scared? Scared of you having to go through pain? Scared that it might not work? Maybe thinking that he's not worth it? It's so difficult.

I thought all that when my hubby offered many years ago. I agreed to let him go for a blood test as he didn't know what blood type he was (healthy people, the luxury of that innocents.....) and TTL we were incompatible. So now I'm 100% APR so I'm waiting for that 1 in a gazillion chance o a cadaver kidney. That's okay. I'm old enough now. Never give up hope, and neither has your hubby.

Lots of love, luck and strength, Cas

[justagirl2325]

Went home from work last night and there's a message on the machine from the K/P transplant team in Toronto wanting to schedule an appointment with him.  Finally!

[PrimeTimer]

Went home from work last night and there's a message on the machine from the K/P transplant team in Toronto wanting to schedule an appointment with him.  Finally!

That is GREAT news! Thanks for sharing!

[Vt Big Rig]

Went home from work last night and there's a message on the machine from the K/P transplant team in Toronto wanting to schedule an appointment with him.  Finally!

Congrats, great news

[justagirl2325]

It is good news but still more waiting as the appointment is scheduled for July 12. 

[Chris]

It is good news but still more waiting as the appointment is scheduled for July 12.

Sorry I do not check in as often as I use to. I check in Facebook more than I do here, which is a big reverse of doing when there was a post about Facebook in here about 7 years ago.


Good news is that you hav an appointment, bad news is a long wait to get ball really rolling. Test will probably need to be repeated such as the stress test to be more current for them. More test maybe neded along with blood test on a routine basis. My advise is to take lots of notes, use a voice recorder to help with notes and be on top of things by being pushy when you fel the need. Proactive is better than reactive to some degree, this maybe a bumpy ride.

[justagirl2325]

He's had such a bad run on dialysis this past few months.  We had yet another near death experience on the weekend - that's his third in five months.  The first time he went septic from an undetected infection that dialysis spread he just happened to already be at the hospital.  The second time only by the grace of god I woke up and realized the needle had fallen out during dialysis.  The alarm didn't wake him.  This weekend just out of the blue he had what I can only describe as a seizure, vomited and passed out cold about an hour after dialysis.  I actually called 911 - but while I was on the phone he regained consciousness and wouldn't let them come.

The only upside to this is that he's finally agreed to take my kidney if we're a match.