Kidney /Pancreas transplant help

ChezMorgan

Well-Known Member
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122
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Peppers , Spiders, War and people who think they are better than me, we are all equal !
Thanks Karen

I have to admit i have sat on my fat bottom sulking in the house for a long time, its all too easy to hide away under the duvet and there are still days that i do.

The cleaning job is going good :) although i did manage to set thier alarms off tonight which had security and the Boss come checking up on me LOl oops

I have also signed up for Yoga classes. I know nothing about yoga, but it looks as if it will be within my capabilities and worth a try.
I am going on Holiday with my dad and sister tomorrow for a week, so i wont be about to answer any replies but want to thank everyone for thier support, it has REALLY made a big difference
xxx
 

dipsticky

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Hypocrites and two faced people.
Chez.
You sound more positive now you have got the info from folks round here. That keg and choccie are sure helpful guys.

D.
 

kevincardno

Member
Messages
5
All waiting SPK Transplant

This has to be the most wonderful operation going, i was dignosed with type 1 diabetis in 1977 and whilst control was quite good my kidneys gradually started to fail. On 31/12/06 I had a SPK transplant at Guys, the improvement was instant kidney function normal creatnine 90 and Hba1c around 5.0.

Whilst a large operation was out of hospital in 13 days and recovery was really quick, driving after 5 weeks to relieve the boredom of having to be off work for 3 months. Three years latter all is well and normal, immunosuppresion hugely reduced and never any signs of rejection.

If you are offered a SPK transplant grab it with both hands, to lead a normal life is womderful.

If anyone wants to talk personally pm me and I will get back to you

All the best Kevin
 

kegstore

Well-Known Member
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771
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Unnecessary rudeness, and any PC
Kevin that's brilliant it's worked for you so well. It is very tempting. Since I last posted on this thread my situation has changed completely, and all my blood numbers are moving away from the danger zone - last eGFR was 52, up from 40 so I'm very pleased with that. I don't quite know why though - I haven't consciously made any change to my regime, but while the numbers are on my side I'm happy with what they tell me! Cheers, Jo
 

bronte

Well-Known Member
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46
Hi, Chez Morgan,
My thoughts and best wishes are with you and I wish you all the best. I live 7 miles from you and if you would like a listening suppotive ear over coffee etc please please PM me.
with love and hugs
Helen
 

jhl2510

Newbie
Messages
3
kegstore said:
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

Hi my name is Jeanette user name JHL .I am a retired NHS nurse.
I wonder if you can advise me? I live in France but hoping to move back to the UK (as soon as I sell my house)
I am 78 years old, type2 for 12 years and kidney failure at 30%. I have big problems with high uric acid causing gout in hands and feet due to kidneys not working well. I cannot take Ibrufren or any NIASAD type pain killers. On a very restricted diet.
When my kidneys get worse, If in the Uk will I be entitled to kidney/Pancreas replacement or is that only for younger people?
Really appreciate all the kind help and advice I find on this forum.
Thankyou Jeanette
 

phoenix

Expert
Messages
5,671
Type of diabetes
Type 1
Treatment type
Pump