transplant-to do or not to do, that is the question

[lisabishop]

Hi, back again-after another sleepless night . As i was saying been diabetic for 30 years-no real problems til after my second child was born 12 years ago. i wont bore you all with the details but just to say at this present time i have a long list of ailments brought on by the diabetes. I'd like to think that it isnt all down to bad blood sugar control and my rebellious years as a teenager but also the duration of the illness. So i plod along the best i can with numerous visits to renal,rhematology,diabetes,podiatrists,doctors,eye departments, all the time knowing that eventually the time will come for dialysis. i was expecting at least another 5-7 years before that wolud happen.My creatinine levels were increasing but steadily at the momemt they are 225 and i know they dont normally intervene til it reaches at least 500. So was really surprised one day when i was taken into surgical assesment unit at my local hospital with an ulcer under my toe that a transplant surgeon was interested in my story. Whilst one doctor took care of my toe, the transplant doctor enquired about my situation and how i felt about my diabetes. Well of course i told him all about my countless infections and failing eyesight. The countless operations and procedures to save my sight in one eye, the cataracts the macula odema, the agony of night time nerve damage and being so tired and lack of energy due to the kidney disease. My sugars were erratic every time my body was out of sorts And YES although i dont go round feeling sorry for myself i would LOVE the chance of a new life while i am still young enough to enjoy it. Well my jaw nearly hit the floor when he said ' I agree - you should be having this transplant now -why wait til you have lost your sight or a foot or youu're not healthy enough to go through it.............
.........and there lies the question do i or dont i.? Am i ill enough to take the huge risk of this double transplant? If i dont take this great opportunity will it be too late by the time i desperately need it. I am off to see the spealist on Monday and my head is all over the place. Is there anyone who has been in my situation who can throw some advice my way. The thought of not being diabetic anymore and all my progressive ailments ceasing is very tempting but what if there are complications? I need to ask the specialist what my kidney output is like. Some people in this site have mentions figures and 15 seems to be the point in which they intervene - my last results were 25 so what does that mean for me. HELP!!!!!x

 

[Dollyrocker]

Sorry, what organs are they suggesting are transplanted?

 

[lisabishop]

They want to do a double - kidney and pancreas.

 

[ebony321]

Hi,

I haven't had a transplant, i've only had diabetes since 2009 so i haven't had it nowhere near long enough for the complications your describing.

But i would like to give my opinion

I think it's brilliant what that surgeon said and i think that's spot on, why wait until it might go all the way and lose limbs or eyesight or dialysis?

With any operation there are complications, more so with transplants i'm guessing and probably alot of work afterwards ith ensuring orans aren't rejected and are working how they are expected.

The prospect of not having diabetes and possibly stopping some or all complications in their tracks sounds very good though!

I've read a post previously that a member here has previously had the double transplant, if you could search for a previous post and see if you can find that member maybe they can give you the opinions and experience you need/want to make such a decision!

Wishing you good luck and all the best with whatever you decide

 

[phoenix]

I've thought a while about this (and its only a personal opinion)
I think that it makes sense to go for the transplant at the earliest opportunity rather than waiting for a decline in kidney function and still having a similar choice (transplant/ lifelong dialysis whilst still diabetic). I assume you will also have to spend some time on a waiting list.
Whilst these operations are not everyday operations they are becoming much more common and have a good sucess rate. Obviously you will need to discuss the possible effects of immunosurpressant drugs etc.
Obviously your family are the important ones to discuss this with.
Good luck.

 

[lisabishop]

Thank you so much for taking the time to read my story and will let you all know how i get on on Monday! X

 

[Angeldust]

Lisa I wish you the best of luck and wish I could advise you. I wanted to ask the same questions,
My consultant in London said he wanted me to consider a pancreas and kidney transplant. I freaked out so bad started crying and have put it out of my mind since, But I have to face up to it.
I'm scared of something going wrong, feel I'm too young for more scars, sick of surgery.......I don't know what the h*ll to do. I've had all this going on for the last couple years since I was 22. Gastroparesis/autonomic neuropathy, peripheral neuropathy, retinopathy, nephropathy........I want to curl up and die some days.

So I feel for you. Please let us know whatever you decide on, you're in my thoughts

best regards
Linda

 

[lisabishop]

Dear Linda, i am so sorry to hear you are also facing this agonising decision and at such a young age. Its true the thought of being free from the perils of the disease is so tempting and if all goes well it would seem the best option to take. I think there are many things to take into consideration and timimg is crucial. I will let you know how the appointment goes tomorrow and in the meantime take care and know that i am always hear to talk/listen. X

 

[cugila]

Lisa and Linda
I am with the others on this, whatever choices you make are yours alone, however speaking personally I would go for it in both your cases.

In my life I have had to make decisions which have had a serious affect on my health.......the majority of them have been the right decisions, especially the major ones regarding operations. You have the opportunity to change your life forever........yes, it has it's own set of problems and only you will know how you will face them and deal with them, but in my view nothing is insurmountable. I'm a positive person you see.

Whatever you both decide Lisa / Linda......I will be thinking of you. I wish you both health and happiness, the two go hand in hand. You will have the support of everybody here as well......

Ken

 

[kevincardno]

Lisa and Linda

I had to make this decision in 2006 after kidney function dropped below 20% and I was assessed as fit for transplant, accepted it with both hands and had transplant 31/12/2006. All i can say is it was the best decision I ever made and that my surgeon/consultant at Guy's ( Mr John Taylor ) could not have been more helpful. Three and a half years later everything is great normal kidney function and normal blood sugar levels, just pop the anti rejection drugs twice a day.Recovery from the operation was 13 days in hospital, releasd then back in for 6days with an infection, driving after 5 weeks, back to work after 12 weeks although from my point of view I could have been back after 8 weeks. After 6 months I was on holiday in Spain and after 1 year spent 3 weeks in the USA doing Disney.

As you can see everything for me has been great, thats not to say this will be the same for everyone all I will say is if either of these orgens fail I would definitely say yes again.

Remember also that the waiting time for kidney/pancreas transplant is also generally much shorter than kidney only

I am more than happy to discuss anything about the operation, work up process or recovery should you wish, just pm with ciontact details

 

[lisabishop]

Hi to everyone , am sorry i havent been on sooner but unfortunately i have been quite poorly this week. Managed to drag myself out of bed monday for my appointment at (Name removed) Hospital in Portsmouth and was so glad i did. When i was first told that they wanted to offer me this transplant a few weeks ago i was so into the idea but since then i had had my routine appointment with the renal dept. Unfortunately my own doc Mr(Name removed) who i had been under for the last 10 years had left and i saw a temporary doctor. Well i left the room in tears after he practically told me i wasnt really ill enough to be taking such risks. After that my head was a mess i didnt want to put my life at risk. So back to this week and i arriced a (Name removed)hospital and was seen by the transplant doctor who will be working from (Name removed) hospital on Oxford where the op will take place. I told him about the renal appt the previous week and asked him if i was really ill enough to be doing this. He told me that even though my creatinine level was only 225 my actual kidney function was only 20%!!! Well thats all i needed to hear and as a result of that meeting i am now under assessment to make sure i am physically strong enough to withstand the op. Feeling really good - although i would be lying if i said i wasnt s*****g my pants!! They are hoping that within 2 years i will have had my double op and be on the road to recovery. If anyone else finds themselves in this position - dont leave it til its too late. Once you are on dialyse things can deteriorate alot quicker if you are a diabetic. If someone gives you the chance of a new life-grab it with both hands. I know i am. X X X X

 

[ebony321]

Good to hear you've decided to go for it, despite what that temp doc said! it must take alot of courage to make such a decision.

Maybe you should keep an update somewhere, even start a blog about how everything goes so there's somewhere people in your position can go to read about it from someones actual point of view and experience, provide the advice, pro's, con's and how it all works! something that you were hoping to find when you originally started this post

I hope everything goes well for you and your op and recovery is good and quick

 

[lisabishop]

Thanks Ebony - that sounds like a great idea. I think i will. Its all quite at the moment. They have drained me of blood and just awaiting the appointment in Oxford for my first heart stress test.
Again thanks to everyone for your posts and good advice. X X X

 

[catherinecherub]

Lisa,
You are one brave lady. The blog does seem a good idea.
You are in my thoughts and prayers.

Catherine.

 

[mehdave]

I just want to say good luck and I wish you all the best. Been told I will most likely be needing a kidney transplant within 6-8 years just into my 30's and allready starting to psych myself up for it. Your very brave I hope it all goes well