Pancreas transplant

[coralkay12]

I'm thinking about asking about a pancreas transplant any advice on this

 

[Emily95]

They only give pancreas transplants to people who have had diabetes for years and have major complications, usually kidney failure too and it's normally a double transplant of kidneys and pancreas, and even then people are on waiting lists for years.
Its very very very very very unlikely to happen as otherwise we would all have one.

 

[coralkay12]

ohwell its just im really struggling with my diabetes im in and out of hospital and to be quite honest im getting sick of feeling like this

 

[Spencer67]

I can see the frustration. i hope you feel better soon. getting a transplant would be a brave thing to do. Im assuming you are thinking of it on the nhs? what about doing it abroad if the waiting list is too long in the uk? i haven't got a clue how much it would cost.

 

[Emily95]

Pancreas transplants are very rare, even private or abroad. They aren't as simple as kidney transplants (not that they are simple anyway) it's really not a good option to think about. Be much more useful to get help with diabetes and insulin management.

I don't mean to sound harsh, I've looked into this every time I'm sick of diabetes too. It's really not possible.

 

[noblehead]

ohwell its just im really struggling with my diabetes im in and out of hospital and to be quite honest im getting sick of feeling like this

Looking at your previous posts you were going to enquire about a pump, how did you get on?

 

[donnellysdogs]

ohwell its just im really struggling with my diabetes im in and out of hospital and to be quite honest im getting sick of feeling like this

You look very young to be considering asking for a pancreas transplant where you would need to take anti rejection pills for the rest of your life instead.

Also my cousin used to organise islet cell transplants and organ transplants for all of Scotland previously prior to now setting up a tissue bank in Malta. He tells me thatwhat I have as a pump is much more preferable to a transplant of any shape or form.

Certain transplants regarding pancreas/islet cells do not last forever. The non hypo is immediate but eventually you will need insulin injections again....

 

[donnellysdogs]

Why aren't you enquiring about a pump?

 

[coralkay12]

The hospital is refusing me because I'm not testing my bloods because I loose the feeling in my fingers xxx

 

[ann34+]

I'm thinking about asking about a pancreas transplant any advice on this

A pancreas transplant is NOT an easy option, it is very risly, unpleasant and there are more risks at all times afterwards - a friend has had one, and it requires massive monitoring afterwards, and even more hospital appointments. You have strong immunosuppressants and it is only an option for those who are very ill, you would be using up the organ of a person who has tragically died, and that organ would have been donated to help save someone who would die with out it. You are young and fortunate - some people who have had diabetes for a long time had no blood testing or much else and genetics may not have been on their side - please settle down with diabetes, it is a chore but compared to this chore a transplant is a major , long, and dangerous operation with the possibility of rejection if you do not exactly follow every instruction re the immune system suppressing drugs you have to have every day.

 

[ann34+]

They only give pancreas transplants to people who have had diabetes for years and have major complications, usually kidney failure too and it's normally a double transplant of kidneys and pancreas, and even then people are on waiting lists for years.
Its very very very very very unlikely to happen as otherwise we would all have one.

see my post below, from what i have seen, there is no way i would dream of one, even if it were offered today ! Also bear in mind you also take on board all the viruses that were not able to be screened for, and possibly others that you may have been asked if you would accept the risk of from your donor.

 

[donnellysdogs]

The hospital is refusing me because I'm not testing my bloods because I loose the feeling in my fingers xxx

You got to get used to it... Testing with a pump is more so really and it just sounds as if you need to check the depth of your stabber and to allow for your skin to yougen up a bit.

Its no wonder your hospital won't help. Do you really consider that you are a priority for a transplant above the people that are seriously ill and actually needing one just because you won't stab a finger a frw tomes a day?

 

[Flowerpot]

I'd put all your efforts into getting the best control you can with MDI coralkay.

I was referred for an islet cell/pancreas transplant due to no hypo awareness, losing most of my sight along with other complications and I decided it was not an option for me at that time in my life. It's a huge deal and brings with it a whole new set of potential problems.

Can you try some different finger prickers and lancets by contacting some glucose meter manufacturers and asking to try their meters?, they all come with a finger pricker. Set the lancet at the correct depth and find the kindest one for your fingers, they aren't supposed to hurt and cause damage.

 

[Heathenlass]

The hospital is refusing me because I'm not testing my bloods because I loose the feeling in my fingers xxx

So, if you are not helping yourself to gain control and get to grips with the D beastie, the hospital team can't do it for you, pump, transplant or whatever. It's harsh, but the person in the driving seat of dealing with it is you .

It's already been said that a pump requires work from the person who has it, it's not an easy option. So no, they won't consider anyone who isn't willing to do the very basics . Perhaps a way forward is to explore the whole issue, and identify what parts are causing you problems, and tackle those one by one ? If your team see you are committed , they will more than meet you half way

Signy

 

[noblehead]

The hospital is refusing me because I'm not testing my bloods because I loose the feeling in my fingers xxx

It shouldn't be the case if you rotate your sites, but you could discuss AST (alternative site testing) with your DSN to give your fingers a rest.

On a pump you have to test more regular than you would on MDI so you do need to try and start testing your bg, without knowing what your bg levels are doing it will always mean you are second guessing insulin doses and not surprising that you've had a few hospital trips, do try a little harder and they may consider you for a pump once they see that your putting the effort in. Good luck.

 

[rowan]

I know nothing about transplants etc but I have had to take anti-rejection drugs for other reasons and they're not nice. They can damage your kidneys and liver and reduce your immune system, so you're susceptible to all sorts of things, and probably other side effects that I don't know about. Not a good way to live if you can possibly avoid it.
Far easier to test regularly and control your carbs.

 

[Juicyj]

Hey Coralkay I understand your thoughts on this I too thought this would be easier than a life of injecting and testing until I really understood what others have said here about taking drugs everyday to stop my body rejecting it then to have a lowered immune system and all of a sudden injecting every day seemed a relatively easier way forward. I am talking to my DSN about a pump, I am realistic in regards to knowing I am way down in the pecking order so it might never happen but as long as I show my team I am working hard at getting good control they will push for me to have one. So really it is up to you as much as wanting an easy solution you need to make it happen and look after yourself, life was never meant to be easy regardless of being a type 1 but you can take better care of yourself and feel a lot better in doing so, only you can do it.

 

[caretaker]

i believe there's non invasive blood testers waiting for EC approval. and i'll sure finger pricking will soon become a thing of the past.just like urine tests stripes

 

[AndyS]

hey coralkay,

It seems that your current big stumbling point if the testing. As has been mentioned alternative site testing might help you out here.
Have you spoken to your specialist team about getting CGM instead? Perhaps you could sign up for a FreeStyle Libre. You still need to do some finger tests but my own experience has been that it has reduced mine so my fingers are recovering nicely. Additionally if you download the software and analyse what is going on it may help you make some changes for the better.

It's a tough thing to live with but hope you start making progress and feeling better soon.

/A

 

[rowan]

i believe there's non invasive blood testers waiting for EC approval. and i'll sure finger pricking will soon become a thing of the past.just like urine tests stripes

Oh I hope so! I get pustular psoriasis on my fingers and nail psoriasis making my entire fingertips painful, so testing can be a nightmare! An alternative would be very welcome, but in the meantime I have to grit my teeth and carry on testing