Islet transplantation - Comments please

Hi -Kristin here from Palm Bay  FL, 34, Type I since age 5.  I was at my endocrinologist last week and he gave me a phone number for the Shands Teaching Hospital (Gainsville FL) to find out if I was eligible for the islet cell transplantation. Anyway I never called. I think I threw out the number. Why didn't I call, I'm sure all the parents are wondering. Well, I'm not exactly sure but I think it's b/c I don't remember ever NOT being a diabetic so my identity is all tied up in it.......It's weird, I've always hated it, ignored it, rebelled against it, thought I wanted it gone, but apparently when it comes right down to it...Maybe ...I don't know. Do any other longtimers have these thoughts? Also I despise the idea of taking 40-50 pills every day. All thought are appreciated tHANKS.  kRISTIN

[JDRF-Team-LRS]

Hello Kristin,
My sister & I are also a long-timers.  She's had DM about 45 years and I've had it about 35 years.  Your observation about your identity being wrapped up in having DM is quite profound, indeed.  I've often thought about what I'd do with the mental & emotional energy if I didn't need to be doing so much "mental math."  I don't know the answer, really ... I don't know if I'd've been complacent and lazy or if I'd've poured the energy into finding a cure for cancer!

Living life with a chronic disease challenges us on every level.  The emotional aspects (likely stemming from the relentless need to be disciplined about our choices and/or live with the certainty our chances for nasty complications escalate with every indiscretion and every mistake-that-was-outa-our- control) are enormous and yet many of us never seem to reach out for or be encouraged to find the support we need for that dimension.  Necessarily, our endos focus on the physical stuff, a1cs, kidney function, heart, blood pressure, eyes, etc. etc.  It's a rare DMer (that's my short-hand for a "person with diabetes mellitus") , indeed, who has enjoyed the complementary emotional & psychological support.

While I've never been encoaurged to think about transplantation surgery, I did seek out info on insulin pumping and BOY!! has that brought a refreshing flexibility while affording me spontaneity in exercise and eating and ... simply sleeping in!

What do you think?  Are you a pumper?  Might you be interested in pumping, which is MUCH less invasive & risky than surgery but which does free up some of the mental math pressures?  I've been pumping for about 9 years and each "generation" of pump has been a big advance.  Interestingly (to me, at least ;-)  ), each time I thought -- "Well, I don't really need that feature, I do it myself" -- and each time I've been humbled by just how rough & inaccurate my "do it myself" approach has been, and how much more steady my BGs are with my pump.  Have I avoided all highs & lows on the pump?  Nope, not by a long shot, but I'm doing better .. much better ... than before.

For me, the very personal question of "would I like a transplant" ... at this point, the answer is no.  To me, the disease I know (or at least I keep thinking I know it!) still seems preferable to the uncertainty & risk of transplant surgery.  OTOH, I have a good pal who had had DM for as long as me and SHE got a pancreas/kidney transplant some years ago.  DM had ravaged her kidneys and ... for her ... transplant was a G-dsend.

Your question has triggered a lot for me, Kristin.  I hope my response gives you some support that you're NOT alone in all this.  Waddya think about the choices & options we have?  Please check in again -- my guess is that after XMas you'll see other comments here, also.

[KLW]

Wow - thanks for the quick response. Yes I've often thought about the pump but I was always hating the idea of something foreign sticking out of my body. But moreso, I guess I'm not really sure why the pump would be so much more efficient than my using a daily dose of Lantus and keeping a novolog pen w/ me during the day? Like a lot of us (I'm guessing), I have huge control issues, so possibly I'm feeling that w/ my pen I have more than w/ the pump. Also, to me, sticking myself w/ a needle a few times a day is absolutely nothing to me, mildly inconvenient at the most. So I'm not understanding the benefits. Sidenote: I have MERSA and am extremely prone to infection - I have heard this isn't much of an issue w/ the pump. Thanks so much

[JDRF-Team-LRS]

Hi again, Kristin,
Actually, while the pump may not be the right thing for you, there is a big difference between Lantus & a pump's basal.  When we take a shot o' Lantus (wonderful insulin that it is!), we get a steady impact from that dose for about 24 hours.  Our bodies, however, actually have a varying need for basal insulin and the pump allows us to have a higher basal amount to deal with, say, the common dawn phenomenon and lower basal amount to deal with natural drops in insulin needs later in the day.  One of the things I like is the ability to lower my basal on rather short notice to better my control during/after exercise (my nemesis, but I do try ;-)  ).  For me, if my BG is anywhere near reasonable, I do well by lowering my basal (whatever time of day, whatever the rate happens to be) by about 20%.

You're surely not alone with not liking something attached to you like 24/7.  That wasn't a concern of mine but my pal was VERY concerned about it.  Her endo really wanted her to try pumping (she's the same person who eventually needed/got transplants) and told her that she could take "pump vacations" any time she wanted ... returning to shots for those vacations ... That option was all she needed to give it a try.  She took one pump vacation shortly after starting; and then pumped for 4-5 years (until her transplant) without another one.  OTOH, I know another young woman who pumped for a few years and now is happy to be back on shots.  

I hope I don't sound overly pushy on the pump!  It has made a wonderfully positive difference for me and so I encourage anyone who's struggling at all to at least consider pumping seriously.  It's not a one-way street, of course, since it's completely reversible.  It is pricey is folks aren't covered by good insurance, and that's often a deal-breaker.

I hadn't known about MERSA/MRSA until I read your post, so I snooped around the internet to learn that the acronym stands for methicillin-resistant Staphyloccus aureus.  Pumping may well pose some additional risks for you since you are prone to infection.  Just like with shots, we are told to be meticulous in our site prep and to rotate sites frequently for good absorption, and to change site locations frequently to avoid infection.  Some folks don't react well to the materials that the "business end" of the pump stuff is made of.

Bottom line is for each of us to find a DM treatment plan that we can LIVE with ... and really LIVE each day as best as we can.  Lantus & Novolog provide tremendous flexibility for living life, and that's something I personally would value, too.

Be well... hope you'll be reading & posting here, too.

[JDRF Team SGG]

I suppose I need to be one to make the case for Lantus insulin. I have switched to Lantus shots with Humalog before meals and am absolutely thrilled with the control I have now over very normal blood sugars. I really think that this is a decision that all who want good control need to make for themselves. There are advantages to pumps and advantages to Lantus insulin as a basal dose. In my case, like you, I like the flexibility of the multiple shot routine and the shots don't bother me at all. Of course, flexibility is there with a pump, too, and the possible change in basal dose is a good thing perhaps with an exercise program. I, too, am very athletic, but in my case, I like the fact that I need to eat more with exercise and can add calories since my basal Lantus rate doesn't change as exercise speeds up my metabolism. I tend to be one of those lean people that need to eat a lot to keep a normal weight, so adding food with exercise works better for me than slowing down a basal rate of insulin. Both solutions offer very adaptable insulin rates, and both offer almost perfect glucose control. Of course, every now and then we misjudge something or miscount carbs, but both the pump and the Humalog or Novalog treatments offer quick fixes to the occasional goof. Since going on the Lantus, I no longer deal with hypoglycemic episodes at all and yet am able to keep blood sugars in the 80's to 100 almost all the time, both before and after meals, without fear of dropping lower when peaks occur in other insulins. I personally like the fact that Lantus is a slow insulin and I have lots of warning if it actually does cause a drop, since I am very sensitive to all insulins and have dealt with hypoglycemia as a dangerous side affect of tight control with other treatments. Both pumps and Lantus/quick-acting insulin treatments are amazingly effective. I think you simply need to weigh your lifestyle and make the decision, or perhaps try both and then decide what you like best. It is truly a personal decision, and I don't know that one offers better control than the other. Both depend on we humans doing frequent blood tests and adjusting accordingly. Unfortunately, neither one offers a "cure" in that rates of insulin are automatically adjusted for us as sugar levels change. If pumps ever get to that point, then I think I would jump on the pump bandwagon very quickly.