Hi Flowerpot, I had islet transplants in sept and nov 2011. I'd been hypo unaware for quite a long time and got the funding for cgm about 6 months before the going on the transplant list. I totally agree a cgm doesn't replace warning signs but it's better than nothing. My hypo signals started coming back quiet quickly after the transplant. Are they exactly the same as I used to have - I'm not sure. It had been a good number of years since I've d had full awareness. But I get the tingling lips, suddenly feeling sweaty, lack of concentration.work are no longer picking up the fact that's' hypo before I do. I did find within the first year after the transplant that if I had a run of hypos 3 or 4 within a couple of days that I could start to lose awareness again- but if I got on top of them the warning quickly came back. For this reason I'm still running a hba1c of around 6.7 -7.4. I'm impressed that you can get a hba1c of 6.2. % without awareness. You must be working really hard at juggling everything. I sat at 8.4 to 8.8%pre transplant and still had life threatening hypo.
The immunosuppressants do have side effects but I decided that they were worth putting up with to get the hypo awareness back and to get some sort of life back. If you have an islet cell transplant you are on lower doses than for a kidney or pancreas transplant. Initially the side effects seemed worst, but lessened over time - I got itchy skin, a slight temor, feeling sick, and high blood pressure. The blood pressure was sorted out with medication. The itchy skin was intense the first week or so but gradually reduced and isn't a problem now. The feeling sick was sorted out by changing the make of the immunosuppressant, I still occasionally get tremors, but I just put up with it. Personally I felt and still feel it was all well worth going through. I know I'm now at higher risk of getting certain cancers but I' ll deal with that if and when it happens and I do all the prevent I can. Healthy diet, exercise, uv protection even in winter. At least I'm now not at risk of dying during a hypo. In the long term I do think that once my transplant fails - as I'm only in my late 30's, it won't last me for the rest of my life, I may gradually lose hypo awareness again, the doctors have never been able to give me a straight answer on that on. But it shouldn't happen straight away. So I' m thinking positively that I will get a long life out of the transplant and by the time I lose awareness again treatment may have further improved. I did pick up a few bugs the first year that needed hospital admission because of immunosuppressants, but I've not had any admissions recently.
I can't explain what it's like to no longer stress continuously about low blood sugars, to worry I'm not going to wake up one morning, that I'm going to have a seizure in public, that I' m going to lose my job. the increase in energy, after you've recovered from the op, because you're no longer battling swimming blood sugars is amazing. The ability to sleep through the night because you aren't having to respond to cgm alarms, or just checking your sugars because you're not sure the cgm is picking everything up accurately. I was under the care of a mental health team cause my diabetes had such an impact on my, within a year of the transplant I'd stopped all that and just see the GP because I still need a few drugs to keep my mental health stable - but much lower doses.
Where do you live in the uk? There are a number of transplant centres. It may be worth at least getting a referral to get up to date information. You could also ask if they could put you in touch with a patient who has had a transplant to give you the patient 's perspective . I see the team inEdinburgh and has spoken to couple of people who were been assessed and wanted to ask another patient questions. My sister has had a islet transplant with the team in Oxford and I know that she has also talked to a couple of people who wer been assessed and wanted to speak to someone who has had it done. I also know there are teams in London and Newcastle. I think there is another centre in the uk, but I can't remember where.