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Islet Cell Transplant

T

the_exile

Well-Known Member
Messages
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Hi all,

Hopefully I've posted this in the right forum!

I'm asking if anyone has been through Islet Cell Transplant, I'll be getting this done fairly soon and there's not a huge amount of stuff online apart from the odd blog (mainly americans and years ago). I was wanting some actual personal experiences from people who have been through it recently and how they've found the immunosuppression and how they actually felt after the op. I know it's a fairly rare procedure though but thought I'd ask none the less!

I'll be keeping my own blog as and when the time comes so will share it, hopefully an intersting journey!
 
I can't recall anyone on here having this done so you may not get any replies, either way I hope the transplant is successful and all is well afterwards! :)
 
Hello,

My mother in law has over the last 18 months had two islet transplants, but procedures where pretty straight forward and her recovery was quick.

Unfortunately, both have not worked out for her, and we are at a stand still to what to do next.

Which hospital are you having the procedure?

She is not very computer literate, but if you have an questions, I will asked her and post back on behalf.
 
I had an islet cell transplant almost 4 years ago. I enjoyed 2 years of being insulin free and now take about 11 units/day and have very good control. Its been an amazing experience and I still feel very lucky to feel so healthy.

I write a blog at http://kathy-mynewislets.blogspot.com I started it right after my transplant and continue to keep it up to date. I also have links to other islet cell transplant resources including a facebook page for islet cell transplant recipients. We have about 20 recipients and many who are interested in the topic. Feel free to go there to ask questions.

Best of luck to you,

Kathy
 
I will be having the procedure done at the Royal Infirmary in Edinburgh, I think they have done it around 8 times.

Kathy, that is exactly the type of thing I was looking for, a fascinating read!

I'm just awaiting an appointment to have an ultrasound of my liver and that's me ready to go!
 
I had my transplant in Australia two years 10 months ago. Recently was not feeling well and sugars started to rise. Within 3 weeks have gone from 2 units to 10 units and feeling dreadful. The one thing I was not aware of was the side effects of the drugs which caused me much trouble i.e. cataracts to esculate, Kidney damage etc etc. Was transferred onto Beladacept which was a monthly infusion and felt much better but now going haywire, doctor visit tomorrow!!!
 
drbvb said:
I had my transplant in Australia two years 10 months ago. Recently was not feeling well and sugars started to rise. Within 3 weeks have gone from 2 units to 10 units and feeling dreadful. The one thing I was not aware of was the side effects of the drugs which caused me much trouble i.e. cataracts to esculate, Kidney damage etc etc. Was transferred onto Beladacept which was a monthly infusion and felt much better but now going haywire, doctor visit tomorrow!!!
Click to expand...

Hope you're feeling better soon, I'm currently off the tranplant list as I've been allocated funding for a pump which i start in a couple of weeks, hoping that the pump will work out for me so i don't have to go through with transplant, that is my main fear, side effects from the immunosuppression, it's something I'd prefer to avoid if at all possible, fingers crossed my pump works wonders :mrgreen:
 
I lost hypo awareness around 5 years ago, so I could be sitting typing this reponse and my blood glucose level could be 1.8, I still function normally until it get to around the 1.2 level, then I tend to collapse, remain conscious for around a couple of minutes and then slip into unconciousness. My local NHS board decided to stop funding insulin pumps when I initially went onto the waiting list for one, the idea was to tighten up my control (which to be fair, isn't bad anyway, hba1cs always in the 7's and not had 1 complication in over 20 years), they only very recently re-instated funding, so in that time between I was left in limbo and the docs mentioned i could go for islet cell transplant instead of waiting as they had no idea how long it would take to re-instate funding. Iselt Cell Transplants have a very good record of people getting hypo awareness back, but the immunosuppression is obviously a huge pain in the backside, you're very much exchanging one set of problems for another, and it's in no way a "cure" for type 1 diabetes....yet. I believe we'll be able to transplant without the need for immunosuppression at some point in the future.

Always found it strange that they would withhold a 2 or 3k pump but spend a quarter of a million, probably more actually, giving me an islet cell transplant, NHS economics for you!
 
the_exile, are you being seen by Dr Casey? I was going through the program, but failed to reach weight required, the whole team @ ERI, seem to be very good, hope things go ok for you, I should hopefully be going back through the process later this year...good luck with it fella.

Bob
 
Hi all, I have recently gone through the islet cell transplant procedure 5 weeks ago at ERI, things went well and I'm now listed for a second transplant.
This is the norm I think , I haven't adjusted well to the medications required on a daily basis. Mainly because of the side effects.
It would be good to discuss this with anyone else who has been through the process.
Tom
 
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