Transplant or not to Transplant

[stuart Rodgers]

Hi Everyone. Hope you all are going well.
This is my first post here and am going straight to the deep end. I have been type 1 for 25 years and I also have something called Sarcoidosis with effects my lungs and joints which leaves me in a lot of Pain.
Over the last few years I have been getting a load of complications due both to the Diabetes and the Sarcoidosis. I have had three toes amputated from one foot and one from the other is also how have charcot foot in both feet which is so painful and I have gone from a size 13 to a 6 and have to have my shoes made. I also have retinopathy which has been bleeding and I have had six laser sessions on both eyes to try and save the central part of my vision. I have really bad neuropathy.
My Pancras has stopped working and have chronic pancreatitis so I can no longer process Fat from my foot so I get bad stomach cramps and explosive D&V with bad smelling poo. I use a pump with CGM so it does a blood test every five minutes as with everything that's going on in can't always feel the signs of a Hypo and they have got really low (2.0) and needed help with the glucogon.
So I fall into the NICE guidelines for a Pancras only Transplant. I've been to see the surgeon and they have gone through the pros and cons
1) if Transplant works in wouldn't be diabetic
2) it will improve the symptoms of the other things and stop any more damage
But
1 ) Transplants only last about 10 years
2) it may not work
3) could end up being worse than before the op
4) could Died.

I have a wonderful Wife and small Son and I want to do the best for them as well as myself.

Has everyone had a Transplant and could give me some advice. What would you do ?

Thanks for your help and time

 

[mikeyB]

Welcome to the forum, Stuart,

The first thing to ask is what would you expect to gain from a transplant? It wouldn't reverse the diabetic complications that you have. It won't control the symptoms of chronic pancreatitis. It's not an operation that is ever done in those who have had their pancreas removed, or who suffer from CP. The reason I say it won't control the symptoms is because in the transplant procedure they don't remove the old pancreas. Normally, this is to allow the old pancreas to carry out its function producing digestive enzymes. Yours doesn't, and the new one probably won't.

It is a seriously risky operation, technically tricky, and should be considered a last resort, particularly, as you say, it might not work. You won't be pleased to hear that the commonest problem after surgery is a dose of acute pancreatitis.

So all in all, the chances of coming out of it better than you are, are slim, at best. Frankly, I'm amazed they are offering the surgery.

Finally, can I ask why your diabetes was poorly controlled.? Was it the medication for the sarcoidosis? What was the cause of the pancreatitis?And do you take Creon to stop the symptoms of the pancreatitis?

You don't have to answer any of these questions of course, but it would help with any further advice.

All the best

 

[mikeyB]

Sorry, I didn't answer your question. I have CP as well as type1, and I would no more have a transplant than fly. My diabetes is reasonably well controlled, and the symptoms of CP controlled with a low fat diet and Creon. Nothing to gain, and plenty to lose.

 

[KookyCat]

Hi Stuart
Sounds like you've had a rotten time of it, and have quite the decision to make. I don't know anything about sarcoidosis at all, so without understanding the challenges I don't really know the impact it might have on blood sugar control, I say that because it might well be that it makes control much more difficult in a way I don't understand. I voted no, but I voted no on the basis that I'd want to try absolutely everything else first. If it was the only option for a reasonable quality life then I would say yes, on the basis of my own values, but we might not share the same values. The main advantage of a transplanted pancreas is blood sugar control, which in turn helps with all of the complications, so the obvious question I'd ask is, has every option been explored in terms of improving blood sugar control with insulin? That might seem like a silly question, but I've found that medical folk tend to have a somewhat naive understanding of the reality of insulin dosing, bless their cotton socks they actually think it a science when it is most definitely an art. Do you have reasonable control now, but had difficulty with it earlier in your diabetic career, or is control still very difficult? As Mikey said you don't have to answer any of those questions, I'm just trying to work out what the realistic options are.

 

[grovesy]

Welcome!
I did not know they could transplant Pancreas! I knew they have transplanted Pancreatic cells!
Not an easy decision! Good luck with what ever you decide!

 

[Andy HB]

I have no experience of decisions like this, so will not comment except to wish you all the best no matter what you decide.

 

[Marsbartoastie]

Hi Stuart. I have no bloomin' idea what you should do re surgery. However, the wealth of experience on this forum might just be able to help you improve the way you manage your diabetes (and other conditions) to prevent/delay further complications. Even if you now have good control, you may be able to fine tune with help from other members of the forum. They teach me something new every day.

 

[Robin]

I couldn't possibly advise you, because I don't know what it's like to be living with your conditions. But I'd worry about having to take anti-rejection drugs for ever afterwards, with all the implications for your immune system.

 

[stuart Rodgers]

Sorry, I didn't answer your question. I have CP as well as type1, and I would no more have a transplant than fly. My diabetes is reasonably well controlled, and the symptoms of CP controlled with a low fat diet and Creon. Nothing to gain, and plenty to lose.

Hi MikeyB.
Thank you for your post.
My diabetic control is up and down due to the Sarcoidosis and the Tablets used to treat it ( prednisolone) My CP has also been caused by the Sarcoidosis with is also an autoimmune disease. I am treating the symptoms of CP with a low fat diet and Creon but this does not always work and I get a lot of D&V soon after food and hypos.
I am fairly young (30's) and have so many complications so early that a Transplant would give my body chance to reverse or slow down the complications. As you said it wouldn't stop CP in my own pancreas but the surgeon told me that the way the plumber them in that I wouldn't need the Creon anymore

 

[pottersusan]

Interesting question. I haven't been offered a transplant, but have thought about it.

Having been living well without a pancreas for 5 years, I will stick with what seems to be working. For me the complications it would bring outweigh the benefits. I already rattle when I walk!

Also I know of someone who had a transplant and then developed pancreatic cancer - a small chance I know, but...

 

[Amigo]

Hi Stuart, I'm heartfelt sorry that you find yourself in this position at such a young age and can only wish you the very best as you tackle what is a massive decision. I'm mindful of Mikey's advice and having CP himself and type 1, he'll be well aware of the issues and risks. It sounds like groundbreaking surgery for this set of problems.

What is your Consultant telling you about the chances of success and the risks? Does he have evidence of success in similar patients and would you be able to have contact with them? I can't even bring myself to vote if I'm honest because the issues and implications are too far reaching and I reckon most of us would be clueless.

All I can do is wish you the very best and whilst I can totally understand why you're desperate to reverse and slow down the complications, I hope you can get the full and honest picture if you decide to go ahead with it. Good luck.

 

[mikeyB]

At the end of the day, Stuart, it's your decision, but you need to have a full discussion with surgeon about the potential side effects of anti- rejection drugs. That is the last comment I will make.

 

[Northerner]

Must admit, I didn't know they transplanted a pancreas by itself, I thought the more common reason was where the kidneys have failed and they do a combined pancreas/kidney transplant, usually where hypo symptoms are non-existent as well. I think I'd also worry about undergoing such a difficult and complicated operation when general health is poor.

It's a very difficult decision to have to make, and I don't envy you, but wish you well whatever you decide 🙂

 

[Ref]

Hi Stuart

I haven't voted because it's not for me to say if the benefits would outweigh the risks.

I'm with Mike in that I don't understand how a transplant will help with your CP symptoms. The new pancreas 'piggy backs' on the existing one with the idea being the old one produces enzymes and the new one produces insulin, so when you eat the old one will still be trying to produce enzymes and cause the pain and digestive issues you are experiencing. Is your surgeon planning to re-plumb the enzyme delivery as well? Even the NHS website states a pancreas transplant is used to treat diabetes and is not mentioned as a treatment for CP. I had a total pancreatectomy just over a year ago because of CP. I once asked about the possibility of a transplant and was told point blank it was not an option with CP.

Things I'd want to know:
What other options are there?
Why is a transplant preferable to those options?
How would the transplant help with the CP symptoms?
If your existing pancreas is damaged from CP then will it be able to 'take' the new surgery
What condition will you be in if the transplant fails during or shortly after surgery or at some point in the future?
How likely is it that the CP will spread to the new pancreas?
How likely is it that the sarcoidosis will cause CP in the new pancreas ?
Plus a whole raft of questions about the surgeon's experience of undertaking the surgery

It's a very, very tough decision and I would encourage you to ask as many questions of your surgeon as you need to make the right one for you.

All the best
Andy

 

[Flower]

Hi Stuart

I was referred for consideration for a pancreas or for an islet cell transplant about 8 years ago. I don't have hypo awareness plus similar to you I had got severe complications at a youngish age, Charcot foot x 2, sight loss, ckd, etc. The main reason was for hypo awareness as my life had become very frightening with random black outs. I wrestled with what to do for some months and ruled out a pancreas transplant , if my ckd had been worse then a pancreas/kidney transplant would have been a different consideration for me. In the end I decided that I was potentially swapping one set of problems for a whole new set in terms of immuno suppressant drugs and the fact the islet cells would sooner or later fail. At around the same time I was offered the chance to use cgm which swayed me even more away from surgery. I do know of a couple of people at my D clinic who had successful pancreas/kidney transplants but as far as I'm aware they didn't have the additional challenges of chronic pancreatitis.

It is a very tough decision to make with your other medical problems to consider. I did wrangle with what to do for some time but I could never see myself going through with the surgery at that time in my life.

I wish you well with your ongoing situation and hope you are able to reach a decision that offers you the best future possible.

 

[stuart Rodgers]

Hi Everyone. Thank you all very much for your advice. This is a massive decision to make. The good thing is that I am not in a position where I have to make my mind up straight away. The Team that am under has a good success rate but they do only do about 9-10 a year compared with double K&P transplant.
They have also found that a Transplant only last about 10 years so would have to go through it all again. In my case their's so much unknown into my medical condition as a whole and it really feels like stepping off the pavement not knowing if it clear or a 10Ton truck is about to hit me. I'm really glad that there are people who can understand exactly.

 

[stuart Rodgers]

Hi Stuart
Sounds like you've had a rotten time of it, and have quite the decision to make. I don't know anything about sarcoidosis at all, so without understanding the challenges I don't really know the impact it might have on blood sugar control, I say that because it might well be that it makes control much more difficult in a way I don't understand. I voted no, but I voted no on the basis that I'd want to try absolutely everything else first. If it was the only option for a reasonable quality life then I would say yes, on the basis of my own values, but we might not share the same values. The main advantage of a transplanted pancreas is blood sugar control, which in turn helps with all of the complications, so the obvious question I'd ask is, has every option been explored in terms of improving blood sugar control with insulin? That might seem like a silly question, but I've found that medical folk tend to have a somewhat naive understanding of the reality of insulin dosing, bless their cotton socks they actually think it a science when it is most definitely an art. Do you have reasonable control now, but had difficulty with it earlier in your diabetic career, or is control still very difficult? As Mikey said you don't have to answer any of those questions, I'm just trying to work out what the realistic options are.

Hi. Thanks for your advice and support..Sarcoidosis is an autoimmune disease which effects mainly the lungs on joints. The medication for this is long term prednisolone which really doesn't help blood sugar control. I also take a cocktail of other medications to help with the pain caused by the sarcoidosis and the neuropathy and some more to help with the side effects. I've been using a pump for about six years which has helped as I have not DKA since and now have CGM funding which is a massive help with the sudden hypoglycemic attacks which am not always feeling until very low often under 2.0

 

[AndBreathe]

@stuart Rodgers , I attend my local Diabetes UK group and we have two ladies who have had the double transplant. Indeed one of those ladies has been unfortunate to have had a transplanted kidney fail and has undergone a second kidney transplant, so her tummy is somewhat crowded!

Both are very well, although I am acutely aware in posting this that it's possible they could be giving a standard response to acquaintances who enquire. I would guess both ladies are in their 40s.

They do acknowledge that the anti-rejections meds aren't a walk in the park, but bearing in mind at least one of them was on dialysis, pre-transplant, I can appreciate how life changing the transplant has been for her.

It's a horrid situation to be in, and I admire you for wanting to do some good digging around and thinking well ahead of any crunch time. I wish you well and hope will find a way forward that you're comfortable with.