Hi
@maggiestanfield thats really interesting. I'm glad your recovery and blood sugar is doing well. Was that your second round of islet cell transplant or the first? What issues are you experiencing from the immunosuperessants?
I have just got myself discharged from the transplant clinic. They are still alarmingly keen for me to get on the list and the door is open should I change my mind, but having previously had a melanoma I'm just not currently sold on the risks benefits balance of an islet cell transplant at the moment. I'm just not convinced creating a honeymoon period with islet cell transplant would help me avoid hypos (the reason transplant is being offered to me is hypo unawareness and severe hypos). How are you finding adjusting you insulin dosages to account for the new endogenous insulin appearing, what kind of support are you getting with that?
Well, that's an interesting dilemma and I can entirely understand your anxieties. I have found, I guess, a bit of a reluctance to talking about the downsides honestly. All the same, I am delighted and thrilled to be where I am now. I have so far just had the one transplant on 6 April in Edinburgh, so I'm less than two months in. I have been virtually insulin-free since 10 days after the procedure. I am still, very occasionally, taking an extra one or 1.5 iu Novorapid by syringe if I feel I've gone a little too high, though I'm learning that it generally corrects itself, without any intervention, without a couple of hours. I was on a pump and taking a daily average of around 23 iu in a mix of basal and bolus doses.
Of course there are no guarantees in any of this. Will the transplanted cells continue on to work at this level or will they start to tail off? Will I then need to go back to the pump or have a second transplant? I don't know and neither to the specialists. This is not a route to certainty!
For me, the most important aspect is that I have stopped having totally unpredictable hypos that I was completely unaware of for the most part. I don't give a darn if I need to do an odd additional top up of insulin. The crucial thing is that I get rid of that total instability which is so life-limiting and stressful. Will that stay the case? Is it just a honeymoon? All I can say is that the cells are working very well - getting a high quality donor organ with lots of healthy cells in it is important - and I hope they continue to do so. It's a bit like life itself - you decide whether you are prepared to take risk and go for something that could dramatically improve your quality of life or you stay with the familiar scenario.
The drugs? When you read through the potential side-effects, it's terrifying! There is inevitably going to be some fiddling around with both doses and drugs for a time. The worst aspect so far has been nausea/vomiting and a violent skin reaction to one of the anti-virals. Both of those issues are being addressed by changes in drugs.
Looking forward to more thoughts and ideas from anywhere at all! I went onto the waiting list while living in Edinburgh - which I did for about 20 years - but in fact had the procedure done a few months after I moved home to Ireland.