This morning, I checked my email as usual. JDRF had sent a clinical trial list to me. I tend to check the list every now and then to just see if there is anything I qualify for and anything that works for me. I've contacted a few over the years but never commited to anything (usually they are out of state and I can't afford the travel expenses).
Today was different though. I clicked on two studies. One involved a new kind of insulin. I wasn't too thrilled about the way it sounded. Another really caught my eye though. Islet cell transplants.
I've looked at transplants a lot through the years. Way back when, they started using seaweed and all sorts of things to help the body accept the transplants. I've heard good and bad stories from it. I've always been interested, but never quite sure what it would mean for me.
I took the plunge anyway. The trial is in north Texas, where I might move to anyway in August. And my brief perusal of the inclusion/exclusion list seemed to fit okay. My only hesitation was with the immunosuppressive drugs. Despite it all, I was shaking with excitement. What if this was it? What if I went ahead with this? What if there was no more diabetes?
I just got off the phone with the trial nurse. She pre-screened me with the basics. I'm a candidate as long as I can lower my insulin needs to where they were before Accutane/birth control. I've only been off of Accutane for two months now and it takes time to get out of your system. So I'm not exactly worried about the insulin needs. It might take time, but I can do it.
There is one big issue that's hit my stomach like a ton of bricks. Immunosuppressive drugs. I have no problems taking pills every day for the rest of my life. Isn't that what insulin basically is? Except I'd lose the bruises and the bottles and the need for syringes. So that's not a problem.
The problem is the side effects and cautions with immunosuppressive drugs. One in particular. If you're on immunosuppressants, they do not recommend getting pregnant. It's been an issue for me for a few years now: the idea of completely deciding not to have kids on my own. I've said that I'm fine with adoption and I constantly alternate between thinking pregnancy is doable for me and thinking it's got to be the worst thing ever.
I can't seem to find much research on immunosuppressants and pregnancy, but I plan to find out as much as possible before deciding anything. At this moment, I am just torn. I am both excited and disappointed. I am sad, angry, and annoyed.
For years, they've said that immunosuppressants are the only way to successfully receive transplants. And they've also said that it's dangerous to the fetus if the mother is on immunosuppressive drugs. A trade off that I'm not sure I'm ready to take.
Is getting rid of my need for insulin and the ups and downs of this disease worth losing my option to conceive? Is no diabetes worth no children?
My first response says no. My heart wants to say no. I hate to lose my options, to know that pregnancy would put a baby at risk if I did this. I hate to force my potential spouse into adoption or surrogacy. I don't understand why something can't be done about this.
I feel like I'm not making much sense at the moment. I don't feel exactly coherent. I am a jumbled mess. One part of me strongly wants to do this...to try for no insulin, no lows, no highs. But the other part of me clings to the potential of pregnancy...the feel of a child growing inside me, the knowledge that the baby is genetically mine, the love shared between my partner and me.
Is it too much to ask that we not have to trade one horrid thing for another? Is it too much to say that we be allowed a diabetes-free life and still hold on to the rest of our health?
I plan to do some research, speak to my endo at my next appointment, and talk it over with the important people in my life. Honestly though, I don't think I'm ready for this commitment. I don't think that I can give a definite no to pregnancy when I'm only 21 years old. I think it's better (for me) to just live with what I've known for 17 years.
Lindsey, I have type 1 diabetes and am on immunosuppressant drugs for Crohn's disease. I am currently going through IVF (need IVF due to complications related to the Crohn's not diabetes). Some immunosuppressants are ok to continue during pregnancy, so you don't have to give up the idea of having kids. Opinion is divided over whether breast feeding while on immunosuppressants is ok though. I would certainly take up any chance to be considered for an islet cell transplant. I will say that the literature you can find on the web on immunosuppressive drugs does not seem to be completely up-to-date regarding pregnancy so I would urge you to talk to the doctors about any medication rather than take a pessimistic view based on what you dig up yourself.
Hi notorious~ I'd read about lupus and crohn's patients taking immunosuppressants during pregnancy. The program that does the transplants told me that it was too dangerous for the fetus though...so I'm not sure what to believe. Perhaps just the type they use are dangerous. You're right, the research is fairly horrible about that! I couldn't find anything definitive and eventually just gave up. Thank you for the input...best wishes with the IVF!
Hey Lindsey,
You know what I myself would be most concerned about? Although I am not familiar with any of the details of the research study you mentioned, I once knew someone who had type 1 diabetes and recieved two kidney transplants in his lifetime. My issue here is to ask if there is any way to know whether the research you mentioned, if successful, would actually last and remain effective throughout the rest of your life, or whether eventually it would fail despite the use of immunosuppressant drugs.
For instance, my late friend needed a second kidney transplant because the first one lasted about seven years before it began showing signs of wearing out. Granted, kidney transplants are not the same as insulin cell transplants, but I would be afraid of getting my hopes up to eventually return to the insulin suppliment lifestyle after some years.
The immunosuppressant drug my late friend took was the commonly prescribed Prednisone which is notorious for causing skyrocketing high blood sugar levels.
I am not familiar with what treatments are out there in the medical field, but to have an insulin transplant combined with a drug that inhibits insulin would seem to be a very tricky health scenario. I too would have many questions to ask before I felt well-informed enough to go through with the procedure.
But hearing about this type of research helps to keep my hope for a cure within my lifetime. I can understand why the decision would be difficult for you. If your choice is to go through with it, I myself would be very interested in learning from you what all is involved and how it is working for you.