Help after having a pancreas and kidney transplant

[leahkian]

It is nearly 4 years since my double transplant which is working fine, anyone who has read some of my posts will know that it has not been easy with the damage the diabetes had already done. A brief recap after the transplant we found out that all my nerves were damaged, issues with bladder and bowel, pain and mental health. The mental health has been going on for 25 years, after the transplant and you get sorted with the new medication there is this wave of guilt of the reason that you are alive and someone has died but they say this is normal.

When you are ready to go home with tablets and regular visits back to the hospital 3 times a week at first. The transplant in the main is done on type one diabetics but in the whole of the UK around 25 are done each year. This is where me and my transplant team found a problem if you have a kidney transplant there is the kidney foundation, the same with hearts and lungs. For a pancreas and kidney there is nothing as far as we have found at the Freeman, so it is hard for us to find people who have also had the transplant.

Even with the support from the hospital it is like walking in the dark as you do not know if what you are doing is right and as we talked about it more there was more people who got depressed i tried to explain that sometimes you do not want to talk to family. You would like to talk to someone who went through the same as you as they will know and understand better but with such a low number and the cost of setting anything up are slim. The consultants have tried to explain to people that are on the waiting list of what could happen when they go home, i can talk to other diabetics as i have ticked most of the what can happen boxes and do it without a problem. I do this as diabetes has come along way since 1979 and hopefully a cure will be found so that people do not have to live with diabetes. If there are any SPK out there i would love to chat and see how you coped and if your transplant team have any support network that helps you.

 

[Grant_Vicat]

It is nearly 4 years since my double transplant which is working fine, anyone who has read some of my posts will know that it has not been easy with the damage the diabetes had already done. A brief recap after the transplant we found out that all my nerves were damaged, issues with bladder and bowel, pain and mental health. The mental health has been going on for 25 years, after the transplant and you get sorted with the new medication there is this wave of guilt of the reason that you are alive and someone has died but they say this is normal.

When you are ready to go home with tablets and regular visits back to the hospital 3 times a week at first. The transplant in the main is done on type one diabetics but in the whole of the UK around 25 are done each year. This is where me and my transplant team found a problem if you have a kidney transplant there is the kidney foundation, the same with hearts and lungs. For a pancreas and kidney there is nothing as far as we have found at the Freeman, so it is hard for us to find people who have also had the transplant.

Even with the support from the hospital it is like walking in the dark as you do not know if what you are doing is right and as we talked about it more there was more people who got depressed i tried to explain that sometimes you do not want to talk to family. You would like to talk to someone who went through the same as you as they will know and understand better but with such a low number and the cost of setting anything up are slim. The consultants have tried to explain to people that are on the waiting list of what could happen when they go home, i can talk to other diabetics as i have ticked most of the what can happen boxes and do it without a problem. I do this as diabetes has come along way since 1979 and hopefully a cure will be found so that people do not have to live with diabetes. If there are any SPK out there i would love to chat and see how you coped and if your transplant team have any support network that helps you.

Hi @leahkian I suspect you know already that I have had the same transplants. If you want to PM me for any reason, please feel free to do so. All the very best, Grant

 

[Grumpy ole thing]

Sending you a hug @leahkian x My brother had an SPK, but doesn't talk about it, possibly to protect me as I am still T1. He was diagnosed 5 years before me, so I tease him that I'm catching him up. I think @Grant_Vicat had a transplant though I'm not certain of the details. Maybe he could help?

 

[Grant_Vicat]

Sending you a hug @leahkian x My brother had an SPK, but doesn't talk about it, possibly to protect me as I am still T1. He was diagnosed 5 years before me, so I tease him that I'm catching him up. I think @Grant_Vicat had a transplant though I'm not certain of the details. Maybe he could help?

You're absolutely right @Grumpy ole thing I had a pancreas/kidney transplant 67 months ago after 54 years of Type1. I wish you well!

 

[leahkian]

Hi Grant i know there are not many of us who have had a SPK as it is a rare operation to have. The problem i have is in the run up to a transplant everything is explained up to when you go home, I know in the Freeman hospital an average of 5 SPK are done a year. So in 10 years 50 people and you look at all the transplants centres in the UK you may get 600 in 10 years. So even though it is a big operation the number is small this may change when the law changes with organ donation, we have the doctors who can do the operation and people who need it but the after care is something that also needs working on. People need to know it is not a cure, it will effect you and your families lives, mental health needs to be offered over a long period and also with the operation you may need to go back into hospital it could be overnight or a week. I suffered from mental health issues before the transplant but by having the operation it does hit you that a person has died for you to be here, i found this hard to cope with until i could reason that the person died not for me but was a organ donor and has give me his organs to live. You think about the family of the person who has died and will do, sometimes i can be in bed but cannot get any sleep as thoughts run through my mind and even though i am on a lot of mediation this may go on for 2 or 3 days. You think if only, why did i do that, how could i be that cruel and how could i put my children through this, to think of all the people i have hurt trying not to hurt them. I would like to think that over the years the doctors will be able to give a leaflet to people who have had a SPK and just to say you may feel like this but a lot of people do after their transplant, you may feel down and need to speak to the mental health team this happens in so many cases but you may not need to see them for long. It is my belief that people who have had diabetes for a long time and have suffered with the problems diabetes can bring can help the NHS the doctors and nurses who do a job that is very demanding under increased pressure could use us as informants telling people about how to cope when they first get diabetes as most diabetics get 24 hours and a follow up in 2 weeks if they are lucky. I am not saying we should be telling the to change insulin does but we could listen to their concerns and if they were having major problems get them to ring someone who can see them sooner.

 

[DCUKMod]

Hi Grant i know there are not many of us who have had a SPK as it is a rare operation to have. The problem i have is in the run up to a transplant everything is explained up to when you go home, I know in the Freeman hospital an average of 5 SPK are done a year. So in 10 years 50 people and you look at all the transplants centres in the UK you may get 600 in 10 years. So even though it is a big operation the number is small this may change when the law changes with organ donation, we have the doctors who can do the operation and people who need it but the after care is something that also needs working on. People need to know it is not a cure, it will effect you and your families lives, mental health needs to be offered over a long period and also with the operation you may need to go back into hospital it could be overnight or a week. I suffered from mental health issues before the transplant but by having the operation it does hit you that a person has died for you to be here, i found this hard to cope with until i could reason that the person died not for me but was a organ donor and has give me his organs to live. You think about the family of the person who has died and will do, sometimes i can be in bed but cannot get any sleep as thoughts run through my mind and even though i am on a lot of mediation this may go on for 2 or 3 days. You think if only, why did i do that, how could i be that cruel and how could i put my children through this, to think of all the people i have hurt trying not to hurt them. I would like to think that over the years the doctors will be able to give a leaflet to people who have had a SPK and just to say you may feel like this but a lot of people do after their transplant, you may feel down and need to speak to the mental health team this happens in so many cases but you may not need to see them for long. It is my belief that people who have had diabetes for a long time and have suffered with the problems diabetes can bring can help the NHS the doctors and nurses who do a job that is very demanding under increased pressure could use us as informants telling people about how to cope when they first get diabetes as most diabetics get 24 hours and a follow up in 2 weeks if they are lucky. I am not saying we should be telling the to change insulin does but we could listen to their concerns and if they were having major problems get them to ring someone who can see them sooner.

Leah, I have no personal experience of transplantation, although I actually know two people in my "real life" who have had the op. I know two sounds unrealistically high, but I met them both through our local Diabetes UK group, where they still attend, even though neither is now T1. Both of those ladies (both female, in the 40s) say they get a lot from knowing each other, even if just for a moan on the phone from time to time. As I understand things, they both had their ops at the John Radcliffe, in Oxford.

Don't beat yourself up about your journey to transplantation. We all live our lives in what we feel is the best mix of the day. Sometimes we get it right, sometimes wrong, and sometimes we can meander right off track for a while. That's what life deals to people. You didn't make yourself need a transplant. You got unlucky in the draw of the cards, when all is said and done.

Going onto your guilt about the person who died. I can only imagine this is one of the more common feelings amongst transplantation patients, but I would urge you to maybe have a look at it from the other side of the coin.

My father was a very good man, who did a lot of good things in his life. (Oh, being human, he probably had some not so hot times too, but we'll gloss over those!) We knew he was dying, but when he did pass away, unexpectedly, one of my questions was if his death could result in gifts to others - meaning transplantations.

Unfortunately, due to Dad's underlying condition, and years of high doses of steroids, that wasn't possible, but I know we would all have been so, so proud if part of our loved on could live on and continue to do some good for someone else - just as he had done during his lifetime.

Those who die and are suitable for transplantation often die in tragic circumstances, but I sincerely hope that the families contributing to that most oawful decision imaginable gain comfort by knowing their passing was not in vain, and that there are people living on, and/or living unimaginably better lives as a result of their tragedy.

Yes, I am on the transplant register, and have been for decades. I will be staying there. I am slo on the Anthony Nolan Bone Marrow register, and got very close to donating twice - once having had all the final tests, the transplant was no longer required. I only hope that was because a better match was found.

There can be no doubt that transplant surgery has profound impacts on a great many people. I know both ladies I know feel their lives are hugely better, and they're getting on with living their lives now.

They are back at work, albeith they each work part time, and the more recent of the two is still finding her pre-transplan confidence, but hopefully it can happen. The more longstanding lady does all sorts of fab stuff, including travelling all over the world, taking it all in.

I do hope that given time you can be reconcilled to your new life and can see a way forward to some sort of contentment.