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Kidney /Pancreas transplant help

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ChezMorgan

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Is there anyone here that has had the double transplant in the UK ?

I was told yesterday that i have Kidney disease and they are functioning at 48% and will need dialysis in aprox 5-10 years, but before this happens my Consultant wants to put me on the transplant list for Kidneys and Pancreas. However i do have wait untill i am near dialysis stage.

I didnt even know they could do a pancreas transplant untill yesterday and have many serious diabetic complications, so am eager to find out more from someone who has had this experience.

I havent slept a wink since finding out , my brain just cant handle all the info he gave me and i need some closure so that i can settle down and think straight.
 
Hi Chez.

Not sure if there is anybody on here with that experience, however have found this link to Addenbrookes Hospital with all the info about combined Kidney/Pancreas Transplants.
May just answer some of your questions. It is a very easy read.

http://www.cambridge-transplant.org.uk/ ... ncreas.htm

Ken.
 
Hey there! Welcome to the club, I had similar news recently - my GFR is currently 40 so will be on the waiting list for a kidney when it gets to 30 - "within 2 years" according to my specialist, but that's before dialysis is needed (at 15) so I'm pleased I won't have to endure that particular joy. I was considering pancreas alone anyway as I have zero hypo awareness and have had a horrendous 10 years or so, so I know a bit about it, here goes:

Pancreas transplants were not successful for many years simply because they are very complex organs and do much more than just produce insulin. The first transplants were complete replacements, and there was just so much to go wrong which often did. Now, although a complete organ is still "installed", the ducts which produce digestive enzymes are not fully "plumbed in", so your current pancreas will still be responsible for producing these. The new pancreas is there for blood sugar regulation only, any digestive enzymes it produces are cleared via an attachment to the large intestine I think.

You're better off getting the 2 organs at the same time, as the quality of organs is much higher - the average age of a kidney donor is 50, whereas for kidney/pancreas (which must come from one donor), the average age is 40 and they tend to be much healthier individuals.

The waiting list is much shorter, based on a blood type of A or O you could wait for a kidney for 3 years, but kidney/pancreas is 6-7 months. You're viewed as a much higher priority requiring 2 organs, even though one of those is elective. You'll be put on the waiting list way before you need dialysis, as this is not a treatment anyone wants to put you through, theory being you will be operated on just as dialysis would theoretically start.

Your new kidney should last much longer with the new pancreas, as it does not have to deal with the raised blood sugars that caused your original kidneys to fail. No more external insulin, no hypos, no hypers, a halt to the progression of any complications, no diabetes and only occasional blood glucose testing to make sure the new pancreas is producing insulin. DVLA still class you as having diabetes, because your transplant could reject which would put you back on MDI or pump therapy.

Here are the downsides: there's no getting away from it, it's a huge operation. Kidney transplants are almost routine in comparison. The operation for "The Double" is more like 6 hours than the 2 hours for kidney alone. The recovery time is also longer, expect to be in hospital for at least a month, whereas for a kidney alone you'd be out within weeks and probably back at work in a month. My nephrologist reckons on me being out of action for 4 months in total, and he also said I would feel a lot worse before feeling any better. Any surgery always carries a risk of death and this is slightly elevated over a single organ transplant, but not overtly so. Rates for post-op complications are also higher, but again not excessively. Anti-rejection therapy gets better all the time, with fewer side effects than even 10 years ago, but you'll still be taking immuno-suppressants for the rest of your life.

I don't know of many hospitals that actually do this operation, there are certainly none in the south west of England, so I will be done in Oxford. But it's definitely available in London and Manchester. We are a rarity!

It IS a shock to learn that you will need a kidney and on a timescale that seems much more real than it ever did before. While the option of adding a pancreas at the same time is a no-brainer for me, the positives far outweighing the negatives, it is a HUGE decision to make so I know exactly how you're feeling.

From the info in your post I may well be there before you, even though this isn't a race I'm terribly bothered about winning! But please feel free to PM me if you need to vent or share or whatever.

Good luck, Jo
 
Wow, thank you sooooo much for the time and effort you spent writing that !

I knew i couldnt be the only one, although i did find a group on facebook, but seamed a bit dormant ;)

I do not jest when i say, your like an Angel coming out of a stormy sky ( Sounds silly i know ) but i will sleep tonight now i know there is someone i can talk too.

My GP wants me to see a counselor, but i wasnt sure talking to a stranger without diabetes would help, maybe i am wrong.

There really wasnt an "option" as the words came out of my Consultants mouth, that i would need a kidney transplant and they could cure my diabetes at the same time, i would have jumped on his desk and signed myself up .........if my legs hadnt turned to jelly !

The problem i am having is prossesing it all, the fact i will need a kidney transplant and the fact they can cure me ( "Cure me" his words not mine ) and then all the enless possibilities and options and things i know i need to know before jumping to any conclusions has baffled me and sent my brain into *** mode

I wont waffel on any more, but i will PM you in the week.
Thank you x
 
Not a problem, I'm a fast typer! Most people who post here just want to help others. I was a bit worried you might have suffered from information overload, as my post summarises all the relevant info acquired over several months, and it's a lot to take in. Develop a good relationship with your entire healthcare team, and they will bend over backwards to sort you out. 8)
 
Chez
Kegstore has given you an amazing amount of information. It's brilliant!
Did your doctor not give you an altered prognosis if you tighten up your BG control?
My T1 husband has kidney disease and I have worked hard with him to stabilise BGs, which used to be all over the place. Now the kidneys are completely stable and he has been redirected from the renal unit to another hospital clinic for care. this has taken only about 6 months.
 
Keg what a good post, well done there!

Chez here is a link to a forum, maybe you can get some more info there too specific for kidney an pancreas transplant patients http://www.transplantbuddies.org/tbx/messages/7/7.html
and http://www.kidney.org.uk/Medical-Info/e ... borah.html

You still have some time before this is happening so in the meantime make sure that you prepare for this operation as best as you can, keep body and soul as healthy as possible, counsellig is good, eat the best and healthiest food that you can afford, do exercise and relaxtion as well, dont bottle things up, deal with your emotions, all this will help you for when the day finally comes, you will have every chance of recovering better after the operation. Just be really, really good to yourself.

My cousins wife had a kidney transplant, she is not diabetic, but she did all of the things that I just mentioned above she also found cranio-therapy very helpful, maybe you want to check this out too, might be worth it.
Her doctor actually told her to get herself as fit and healthy as she possibly can before the operation as it will give her body a better chance of fighting back after the operation, She is still doing really good after 9 years.

I wish you all the best

Love from

Karen x
 
hanadr said:
Chez
Kegstore has given you an amazing amount of information. It's brilliant!
Did your doctor not give you an altered prognosis if you tighten up your BG control?
My T1 husband has kidney disease and I have worked hard with him to stabilise BGs, which used to be all over the place. Now the kidneys are completely stable and he has been redirected from the renal unit to another hospital clinic for care. this has taken only about 6 months.
Click to expand...

Hi Hanadr,
My consultant did not give me an altered prognosis as such, only that with VERY tight control I could prolong the need for a kidney transplant to aprox 10 years (maybe a bit more) I will stive to get my blood sugars better , as i do not want to go completley blind or lose a leg or foot in the mean time, and i obvioulsy want to stay fit and healthy for when the time does come that i need the transplant.
However , some days i find life/diabetes too difficult and the thought that i could one day get a pancreas transplant and not have to struggle with my blood sugars forever is like a mirical.
 
ChocFish said:
Keg what a good post, well done there!

Chez here is a link to a forum, maybe you can get some more info there too specific for kidney an pancreas transplant patients http://www.transplantbuddies.org/tbx/messages/7/7.html
and http://www.kidney.org.uk/Medical-Info/e ... borah.html

You still have some time before this is happening so in the meantime make sure that you prepare for this operation as best as you can, keep body and soul as healthy as possible, counsellig is good, eat the best and healthiest food that you can afford, do exercise and relaxtion as well, dont bottle things up, deal with your emotions, all this will help you for when the day finally comes, you will have every chance of recovering better after the operation. Just be really, really good to yourself.

My cousins wife had a kidney transplant, she is not diabetic, but she did all of the things that I just mentioned above she also found cranio-therapy very helpful, maybe you want to check this out too, might be worth it.
Her doctor actually told her to get herself as fit and healthy as she possibly can before the operation as it will give her body a better chance of fighting back after the operation, She is still doing really good after 9 years.

I wish you all the best

Love from

Karen x
Click to expand...


Thank you for this helpful and inspiring message xxxx
 
Chez.
How active are you able to be?
If you can find a form of exercisee whicch suits you, you might start to feel better and also get fitter for the possible surgery. Exercise, especially walking is a great way to battle depression. Do you have a Health Walk group near you? these are great. A good walk with a trained leader and friendly company too.
 
I did a lot of walking uptil last year, I really miss walking and no doubt so do my two best friends ( my dogs ) I can manage a couple of blocks to the shops. I dont have much feeling at all in my feet, which makes it difficult and im always tripping up things lol. I have a wonderful podiatrast and have had made a pair of hand made diabetic shoes, which support my feet and keep them at the right angle, they dont have any seams inside so they dont rub and cause blisters/ulcers. They also have relief on my preasure points where i have had pervious ulsers. But because of my blood preasure /kidneys my feet and legs swell up and have been advised to keep my feet up as much as possible :(
 
ChezMorgan said:
Is there anyone here that has had the double transplant in the UK ?

I was told yesterday that i have Kidney disease and they are functioning at 48% and will need dialysis in aprox 5-10 years, but before this happens my Consultant wants to put me on the transplant list for Kidneys and Pancreas. However i do have wait untill i am near dialysis stage.

I didnt even know they could do a pancreas transplant untill yesterday and have many serious diabetic complications, so am eager to find out more from someone who has had this experience.

I havent slept a wink since finding out , my brain just cant handle all the info he gave me and i need some closure so that i can settle down and think straight.
Click to expand...
Hi There,
I have not had the op yet but I have been to Oxford John Radcliff Hospital for the preliminary tests. My kidney function is at around 30% at present but it has been lower in the past. Good control of the diabetes and (just as importantly for the kidneys) blood pressure being kept as low as possible seem to have slowed down the downward trend to almost nothing.
I was first taken onto the list about 2 1/2 years ago and since then I've been taken off again twice as my blood test results seem to fluctuate. It might seem a bit ungrateful but I do sometimes wish that I was ill enough to just stay on the list. But realistically I'm still not feeling bad so I guess that when the time comes for me to need the op I really will benefit from having it done.
The way that the system worked for me is this:

I was refered to see the Oxford Transplant team by my renal specialist,
The Oxford team came to my nearest main hospital (Dorchester, Dorset) for my initial appointment, here they gave me the criteria for getting on the list (BMI below 30, age, length of time of being T1 etc)
They then get a copy of every renal blood test sent to them from that point,
When my output was about 30% they asked me to go to Oxford for a series of checks, exercises and quite a few blood samples (13 bottles :shock: ). This took most of the day and from these results they then know whether you are fit enough to withstand the op.
Be reasured that the team are very good and you will know everything about the op before you have to say yes or no. I was told a lot all at once originally, but then as I went through the system each part was told to me again at every point. I am currently off the list and my outputs are still around 30% so it could be a few more years before my time comes.
Good luck and I hope this helps a bit.
PS I know a chap who did have it done about 18 months ago. Before, he struggled to get up each day but he is now working full time and playing sports. He says its taken him back 30 years so it must be a bonus!
 
mrburden that is a really useful read, you sound a little bit further along the line than me or Chez, I haven't even been to Oxford yet, but most of your info is triggering memories of discussions I've definitely had in the last 9 months or so!

Kidney disease is really annoying in that its progression is not linear, being more about probabilities and trends than anything else. 6 months ago I was told that my kidneys had a good fight left in them, possibly 10-15 years which is one reason I ruled out pancreas alone at the time, but now I'll be on a waiting list for The Double much sooner than that. I can appreciate your frustration. :?

Let us know how you get on?
 
Chez if your blood pressue is high you should not really exert youself anyway, and walkng is difficult for you too, can you swim or cycle? Or how about something really gentle like chair based exercises?

Your feet are numb, but you can fidget and twiddle your toes and flex your feet and then relax and flex again, all these things will help your circulation which will help with the op and post op and once you are no longer diabetic you stil need good circulation and hopefully your numb feet will be a thing of the past too.

Love from

Karen x
 
Chez,
A point I didn't mention in my last post was that I went to my first appointment with the transplant team with the view of probably saying "no thanks" if they offered me the op, mainly due to the fact that it is such a "biggie" and the constant worry of both infection and rejection afterwards. Fortunately, this appointment was in the dialysis unit and I was sat waiting with my wife and we saw the patients going in and out for their dialysis. Frankly, if that is the only alternative to an SKP transplant I'd rather not be around to need it.
My desicion was changed to "yes please" as soon as we got chatting to the patients. They all said they spend alternate days at dialysis, the next feeling like c*** and get one "good" day (usually Sunday) in a week. Add to that a diet that is so restricted it seems like even crispbread is a sin and the painful lumps and bulges from the dialysis, they seemed to be just prolonging their "end date", and that's not for me I'm affraid.
 
ChocFish said:
Chez if your blood pressue is high you should not really exert youself anyway, and walkng is difficult for you too, can you swim or cycle? Or how about something really gentle like chair based exercises?

Your feet are numb, but you can fidget and twiddle your toes and flex your feet and then relax and flex again, all these things will help your circulation which will help with the op and post op and once you are no longer diabetic you stil need good circulation and hopefully your numb feet will be a thing of the past too.

Love from

Karen x
Click to expand...

I have recently taken a little job, which was a big step for me. I havent worked in 3 years. Its only cleaning once a week for a couple of hours, but it gets me out the house and a little excersize :) I massage my feet evey night and yes, give them a twiddle too. My circulation in my feet is actually very good, so i think its just nerve damage. I love swimming............I should go more often .

Thanks x
 
mrburden said:
Hi There,
I have not had the op yet but I have been to Oxford John Radcliff Hospital for the preliminary tests. My kidney function is at around 30% at present but it has been lower in the past. Good control of the diabetes and (just as importantly for the kidneys) blood pressure being kept as low as possible seem to have slowed down the downward trend to almost nothing.
I was first taken onto the list about 2 1/2 years ago and since then I've been taken off again twice as my blood test results seem to fluctuate. It might seem a bit ungrateful but I do sometimes wish that I was ill enough to just stay on the list. But realistically I'm still not feeling bad so I guess that when the time comes for me to need the op I really will benefit from having it done.
The way that the system worked for me is this:
Click to expand...

Thank you for all the info,
I feel a bit more settled now, things are sinking in and thanks to all the replies here I dont feel so alone.
 
Chez that is wonderful news that you have got yourself a job now, I take off my hat to you, you are not so well but you still have the drive to get yourself out of the house doing things, I know that in your situation I would just be sitting around on my fat backside just doing nothing but complaining, it would take me a loooooooooooooooong time to get up and do something positive.

And dont call it 'just a cleaning job', cleaning is a very important job and its nice too because you se results, even if they might not last very long.

All the best

Karen x
 
Choccy
I do a chairr based exercise class once a week and it's the hardest class I do. Gentle doesn't come in to it.
 
Oh Hana, I know there is some really difficult chair based exercises, but also some really gentle ones too, I did them to help me get over an operation.

And knowing how fit and active you are, you probably mean by chair based exercises that you carry a chair up a steep hill, and a heavy recliner armchair at that :-)
Honestly, I dont know how you do it, I am active too, but you put me to shame, you are not just active but you are also dealing with your own diabetes as well as your husbands, I admire you.

All the best

Karen x

How is your little granddaughter doing? Enjoy summer with her :-)
 
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