Monday, December 26, 2011

So I Know This Stuff, What Do I Do With It?

Until I wrote the post about clinical trials, I hadn't realized that I'd become eligible for an islet cell transplant through a clinical trial. That is, I'd seen it before and realized that I would be eligible as soon as I passed the fifth anniversary of my diagnosis, but I hadn't though about it since then.
So I looked at the listing and I thought about it a little bit, and I thought, what would happen to this blog? What would happen to my membership in the diabetes community? What would it be like to be on immunosuppressants? Can I even learn to swallow pills? Would I turn out to be eligible if they did all the tests on me anyways (for all I know I might have a measurable provoked c-peptide level, or my history of pancreatitis would be a problem, or my liver enzymes would be elevated like they sometimes are, or in the opinion of the investigator my other health issues would be too much)? Would I be healthier with a transplant? Would a transplant help me more than it would help somebody else waiting for a pancreas? I'm really small- would I get a pancreas nobody else could use anyways?

Then I had that really awful hypo, followed by a second hypo that began during the day but which lead to a real change in consciousness/ hallucination anyways about two weeks later. So that made me think. Islet cell and pancreas transplants are supposed to be pretty good at preventing hypoglycemia.

In the end, I don't think I've reached the point where a transplant would clearly be the healthier option, and I'm not that tired of diabetes yet. Maybe sometime in the future. I don't know.

The other thing that my research makes me think about is my insulins. As my long time readers know, I used Lantus and Novolog from September 2006 until July 2011. Then I added Regular to the mix and within a couple of weeks decided that I liked Regular better than Novolog. Now I'm using Lantus and Regular. The research papers I've read strongly support the theory that Lantus is not really better than NPH at allowing people to get lower A1cs (in fact, NPH is better than Lantus in that respect). And NPH is cheaper, and I could mix it in a syringe with Regular. So why don't I switch?
There are, at this point, a lot of reasons why I haven't. For one thing, I kinda know what Lantus does in my body. I have only used NPH for one week back when I was wet behind the ears still and all I really remember from that was that I woke up hypo twice that week, and after switching to Lantus four months went by before I woke up hypo again. For another, it was drilled into me that on NPH, everything must must be scheduled- including the shots must be on scheduled, and meals must be consistant and on schedule. From my more recent readings, I think this is something that can be worked around, especially with a Dexcom and using regular that is not pre-mixed. But it might leave me more susceptible to lows when I'm sick, and we all know that I'm sick way too often. And taking two shots at a scheduled time 12 hours apart would be rough- although maybe a bedtime and a wake up time (the only two times I think I could schedule consistantly) shot wouldn't be too bad.
I also feel like this would be a difficult conversation to initiate with my current endocrinologist, even though we've both been feeling that Lantus isn't doing a great job with my basal needs- he's suggested Levemir. Lastly, the research suggests that Lantus does reduce hypoglycemia, particulalry night time hypoglycemia, and I already have a problem with nocturnal hypoglycemia- would NPH make it worse? I'm not sure.

But for now, I intend to keep things the way they are.


Nathan said...

Are you just taking Lantus once a day? When I was using it I found that it didn't seem to give me the same basal the whole time (24 hours). The mornings were rough after the AM liver activity. I ended up taking a split dose, but it was another variable that was hard to sort out when things changed. Nothing's perfect, I guess.

On the islet transplant... yeah, it sounds tempting, but I'm a little freaked about about the immunosuppressants and side effects. I guess you could say I've gotten used to this illness. As an adult that is set in my ways, I don't know if I'd get used to a new set of trials and tribulations as easily. I think I'll hold out for variables that are easier to swallow.

I just read a testimonial today and it was kind of awesome to think about...

Jonah said...

I am taking Lantus just once per day. I initially took it in the mornings only for two years, split the dose between mornings and bedtimes for a couple of months, and switched to taking it only at bedtime- for some reason it seems more potent that way.
It definitely does not give me the same basal for the whole day, but I don't think I need it to- I just need it to provide me with some basal the entire day, and for the proportions to be predictable- I don't mind eating for my insulin.
Thanks for the link. I think one of the reasons for me to think about a transplant in the future and not now is because it doesn't offer a permanent euglycemia- so maybe it's better to have a transplant when you are struggling more and/or have complications it might reverse.

Anonymous said...

Our DD only used NPH for a month or two and it did not control her blood sugars at all (highs); Lantus and Novolog brought her sugars down in a week. I have heard of splitting the dose with Lantus or using Levimir. Not a big fan of NPH here. I think islet transplants may be the answer but would wait for when you can have then without having to be on immunosuppressants the rest of your life. That day is coming. Sernova Corp is working on using islets with Sertoli cells (which is a natural immunosuppressant). LCT will improve their technology; I'm sure. There are many others working to make islet transplants possible without immunosuppresants. I would wait. If having severe hypos I would try the Dexcom. Works about 70 percent of the time. It would help you.

Jonah said...

WIth all due respect, I would suspect that if NPH didn't lower blood sugar, not enough was being given.
If you look at the top of my page, you should see that I've been using the Dexcom for 16 months, and I used a Guardian before that. Most of my worst hypoglycemia episodes have happened while wearing CGMs.
Presumably if islet transplant without immunosuppression happens, those with standard islet transplants would let their first transplant reject and then get the improved transplants.

Anonymous said...

Sorry I did not notice you were wearing cgms... yes, they are not foolproof only worked for us 70 percent of the time plus could not hear the alarms without baby monitor. Islet transplants, even with life-long immunosuppressants, work well for many people. Even when the islet transplant stops working effectively, the need for immunosuppressants is still life-long. So, while a solution for some, you do have to consider this aspect. And consider, I suppose, whether you can wait for the islet transplants that do not need immunosuppressant therapy to come to market. LCT will be doing islet transplants that do not promise you will not need to use insulin; specifically for the purpose of eliminating hypoglycemia. I'm sure the transplants will be cheaper if done in Moscow. I am very interested in the progress of those who have had islet transplants with or without immunosuppressants as I see it as an option for our DD's future. If you do decide to opt for one, I hope you will blog about it.