Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Tuesday, October 10, 2006

Weird Lows and Long Walks with the New England Journal of Medicine

I woke up this morning at 5:30am with a blood sugar of 57. I felt fine, but this low was weird. I even retested just to be sure. It is weird because of my morning basals, and how they are set up so I can work out from 5:30am to 6:30am. From 4am – 5:30am I have my basals set at 0.05u/hr, the lowest possible basal other than delivering no insulin at all. That means that for an hour and a half before my low blood sugar value of 57, I receive only this basal rate of .05u/hr. My morning basals during this time period for mornings that I don’t wake up and work out is .6u/hr. Hmmmmm. Something to scratch my head about I suppose.

I am full swing into completing my application for the islet transplant. So far today I have sent out paperwork to my PCP and dentist. I still have paperwork and releases to be sent out to my ophthalmologist, endocrinologist, and gynecologist. One thing that could kick me out of this trial is my weight. I’ve gained between 2 and 8 lbs (I fluctuate okay!?) in the past few months as my running has been reduced due to my knee injury. My most recent weight was 162 (BMI of 25.4) but I’ve been known to swing in the past few months up to 168 (BMI of 26.4). I need to keep my BMI under 26 to qualify, so until I hear I’m booted out for some other reason, it is diet city baby! To be able to have an eight pound weight fluctuation, my HIGH weight needs to be 164 and my LOW weight needs to be 158. That means I need to lose FOUR POUNDS. Damn damn damn damn damn. Ah well, I’ll just reacquaint myself with the awesome joys of salads and oatmeal. Wait a minute, that is what I eat already! I’ll just reacquaint myself with LESS oatmeal and salads, and perhaps a few less cookies as well…hmmmph.

I went on a walk today during lunch break with my nose buried into a New England Journal of Medicine Report on “Islet Transplantation in Seven Patients with Type 1 Diabetes Mellitus Using a Glucocorticoid-Free Immunosuppressive Regimen.” Um, that was good stuff. Thankfully, I’m a whiz with medical terminology, so reading it was a breeze, and I luckily didn’t run into any parked cars (I’m not certain if this sentence has facetious intent or not). I’m sure I was a sight to see not bothering to watch where I was going!

As you’ve probably guessed by now, I DID manage to find my envelope of information and paperwork from the Diabetes Institute of Immunology and Transplantation. It thankfully was all neatly in it’s original envelope, just waiting for me to get off my rocker and start working on putting it all together. Whenever I get the information the transplant coordinator is sending me I suppose I will just have extras. I’m thinking I am going to get a binder to help me track all of this stuff. There is so much paperwork it is unfreakinbelievable!

15 comments:

Scott K. Johnson said...

How strange about your BG this morning! Scary to think what it might have been at your 0.60 rate!

What an interesting journey in regards to the transplant stuff!

I'm glad that you're sharing it with us. Have you learned much about the anti-rejection meds yet? Those are always the ones that those of us not very knowledgeable about transplants are very scared of.

And how the heck can you read and walk at the same time?! Heck, I can't even do that on a treadmill, not to mention the real outside world with things to run into...

MileMasterSarah said...

Scott,
I've read in other blogs about blood sugar WTF moments, and this morning was one of those!

I really don't know much about the anti-rejection meds at this point. I know that this is a non-steroidal immunosuppression trial, but even that doesn't mean a whole heck of a lot to me. I can go through all of this paperwork and be booted out for a lot of different reasons, so I guess at this point I'm going with what I know. What I know is that I would be exchanging daily interruptive fear of hypoglycemic episodes I can't predict for a different kind of fear. I imagine that if I really qualify when push comes to shove I will sit down and reexamine this entire thing. The thing is though, I've laid this in God's hands. I decided somewhere in my heart that if this happens, despite all possible roadblocks, then perhaps this is the road I should walk? Sometimes it seems in life that no matter what you do you can't achieve certain things, so you shift your focus, and you wonder why it took you so long to focus on something different. If doors open for me and this transplant, I am not going to question the path that is made for me!

Chrissie in Belgium said...

Hi Sarah,

Thank you so much for sharing your experiences concerning islet transplants. I really do have quite a few questions I would like yo ask you, but since I am unsure if I will be able to leave any comment at all, I will keep this message very short! Thank you for writing. If I CAN leave a comment the questions will be asked later!

Chrissie in Belgium said...

Hi Sarah,

YES - my comment worked! So here come some of my thoughts and questions! I also was on the path toward islet transplants, but chose NOT to follow through. Maybe I was just too scared?! I really need to discuss this! First of all, I do not have your faith. I just don't! I would love to have FAITH but I don't. I cannot say it any other way than that. I started on an insulin pump b/c that was the first step if one wanted to do islet transplants.... Now I have had the pump for more than 2 years and when I went to the hospital to have the first tests for the islet transplant procedure I was scared to death when they said they would give me glucagon to check my responses, this would give them needed info about my pancreatic situation. I have had D for 45 years and I have no kidney problems, which is a frequent criteria for islet transplants. I do have hypoglycemic unawareness, but this is not an issue that dictates who will get/not get a transplant at MY hospital. During the two years when I have had the pump I have VERY detailed logging of everything - food, exercise, insulin, moods etc. The logging has shown that I seem to often NOT follow the general "rules" proclaimed by doctors. I would maybe call what happened to you, your hypo following your very low basal setting, just such a "divergence". (However, you did not mention if you had extra exercise the day before which could explain the hypo..... Although me, my bg can easily increase after lots of exercise!) Aren't you scared that procedures will go wrong? Aren't you scared that your body will react in a way that is unexpected and the doctors will be at a loss for how to make a correction. I am VERY scared of this! So often in the past my body reacts strangely to the set rules, and I do not have FAITH to help me through! (A side point here is that perhaps MANY diabetic are seeing weird things happen and that MAYBE the existing rules are inadequate!Maybe people like me are NOT weird. Maybe there is a very good explanation of why you had that hypo, but science today does not have that explanation.) I must also ask you - how can you choose immunosuppressive drugs over hypos when it is known that these drugs cause cancer? I feel that at least with the hypos I know what I am dealing with! I have been hypo unaware for so long, and I have managed! I know so very little about the dangers associated with the immuno-repressive drugs. This lack of knowledge scares me A LOT. Again I do not have the FAITH to help me out here. What scares me the most about my D is when i do not understand what is happening, but the same applies to the islet transplant procedure. Doctors do NOT have a lot of experience in this field b/c it is no new. We cannot expect them to have all the answers. Maybe our differnt approaches to this are all due to you having faith and me not having it!

I do not mean in any way to criticize you opinion! I need to try and understand your thoughts b/c I am so very unsure of myself. Please understand this!

Chrissie in Belgium said...

Me again - but I cannot stop thinking about your thread. Another completely different way of seing this is that maybe IF I had faith and if I should die from a hypo during the night (which I am scared of since I keep bg values low) I could reason that this was the fate chosen for me! I know I am totally crazy. I have this stupid talent os being able to see things from 10 different points of view, all at the same time. I just do not know which point of view to choose. Also your basal rate really isn't that low in the early morning! Mine is 0.2U and I too have hypos! Way too often and the worst is that they do not follow an understandable pattern so they cannot be eliminated. I wake up twice every night to check my bg values. IF I start the day higher, the bg values stay higher and bounce around more. I find it easier to balance the enire day when the bg starts around 70mg/dl in the morning.

Lyrehca said...

Hi Sarah--thanks for your comment on my blog, which makes me want to comment on yours.

I don't know the specifics of the islet-cell transplants, but didn't the original Edmunton trials turn out to be fairly unsuccessful, two years later? That most people (and there were only 11 to start) had to begin using some kind of insulin again within two years?

And with Chrissie's comment about the immunosuppressent drugs being possibly more dangerous than going low all the time, why are you still choosing to move forward with islet cell transplants? (I'm not trying to be a disbeliever; I'm seriously curious). Looking forward to your responses.

MileMasterSarah said...

Chrissie and Lyrheca,
Wow! That is a lot to respond to! I am very early still in this process. It started out as a maybe I would qualify, and then I had made it through the first two parts of the screening process. There is a lot that I still have to learn, and as I am going through this, I might change my mind. I always have that option, right? My inability to sense hypos really does scare me. I think about it more than I probably should. I have spent a lot of time weighing the pros and cons as I see this so far. On one side, so I can’t feel my lows, but I’m finally at the point where I don’t have them usually more than once a day, which is saying a lot! I don’t spend a lot of time bouncing around, and I’m fortunate to have a health insurance company that is willing to pay for a huge amount of strips per day. I am able lead a pretty active life and I have satisfaction in my life. The problem really lies in the lows and how that one unforeseen and unfelt low could shape my life and my family’s life. That is just so scary to me. I do what I can to prevent them, and that is all I can do right? Having an islet transplant would address these problems with lows. I’m not necessarily seeking insulin independence, I’m seeking to be released from a cycle of vicious lows that over the course of the past few years have robbed me of so many things that contribute to my quality of life. I don’t spend a lot of time bemoaning the problems I’ve had with lows, but inside I know that each severe low I have that I barely manage to treat on my own accord, feeds inner feelings of futility. I guess as I go further into this process of applying for the islet transplant I will learn more and more about the side effects of the immunosuppressive therapy and I will have to make some difficult decisions, assuming I qualify for this trial after these final parts of the application process! I may end up deciding that this is not the best choice for me. I may decide that it is. Either way, the prospect of eliminating severe lows is enticing enough for me to give this a shot, and see what happens on the way!

MileMasterSarah said...

If I weren’t a single mum, living alone with my two young children, I’m not certain that this would be quite as appealing to me. If my circumstances were different in this regard, I may feel more comfortable in the support system I have around me being appropriate if an unexpected low that I was unable to treat should occur. It’s hard to explain this fear that extends beyond just me to my children. As my confidence in my abilities to sense and treat lows has diminished I have done whatever I can to try and prevent lows as well as create a plan for my young family to follow should something happen to me. It is exhausting and painful. I never used to fear lows. I don’t fear lows that I manage to catch. I fear lows that I don’t catch and can’t treat. Working towards this islet transplant, in conjunction with the other things I am working for concerning my care (ie. Attaining a CGMS system in the future, extensive sugar/activity/food logging shared weekly or more often with endocrine team) allows me to feel like I am actively working to correct this problem in any way I can. I cannot passively allow this to tear me down, despite all the fear it can cause. I have given myself tools I need to feel like I am working to correct this. I don’t know how else to explain this!

Minnesota Nice said...

Gosh, Sarah, these aren't musings - they are big fat enormous life-navigating decisions - may you be guided to make the best choices for everyone involved. And I hope that your appointment at the IDC proves beneficial.

As far as my gratitude journal goes, I've been doing it every day for about the last 7-8 years. I have to write down at least 5 things that I'm grateful for (and sometimes it seems like I need to dig deep). It's just an exercise to focus on things that we take for granted.

Today, so far: 1)I have a nice warm coat to wear 2)I enjoyed the beauty of the hand-dyed yarn that I was knitting with on the bus to work 3)I unexpectedly ran into my friend, T., in the grocery store 4)My bp reading when I got home was 119/70 5)I walked pain free, desite there being pins and plates in my ankle.............I already feel better than when I first sat down at the computer tonight!

skye96 said...

Ooops I saw that you only take 0.05U during several hrs during the night. I do not know where I got that other figure from????!!! Yeah, I do not under stand how one can have a hypo with the basal SO low, my guess is that other things in our body affect our bg values. These other things science does not understand! You didn't have any exercise the day before? Last night I had hypos three times. I could lower my night basal below 0.2U, BUT usually the bg levels stay level, so I cannot change it after a weird night that maybe occurs once per week. 6 days of the 7 all works fine. I find no explanation from exercise or foood. I definitely understand your fears of hypos AND particularly with your sole responsibility of young kids!!!! Yesterday I just sat at my desk trying to understand a diagram for over 2 hours, and NOT understanding. Of course it was a hypo, but that didn't occur to me!!! My husband TOLD me to do a test, and he was right! But that was after 2 hours. I was in the 40s. I USUALLY feel 40s, but not always! Doctors do say that you regain hypo awareness if you keep your bg ALWAYS above 80-90 for at least a week. I do not see this as a solution b/c doing this makes my blood values bounce and I will again have to return to getting it lower and then the hypo unawareness will return!

Do you understand why the transplants, although only 10% remain insulin free after 5 years, usually result in better hypo awareness? Why would having some better islets make us more hypo aware? There is stuff here that no one has any knowledge of! There is so much we do not understand!

You seem also to not need much insulin, like me. It is nice knowing of another person whod needs very little insulin and is very sensitive to teeny changes....My TDD is only around 13-15U including absolutely all insulin. What is your TDD? Is it that low too? Just curious!

Chrissie in Belgium said...

All I do is make mistakes - that was Chrissie in Belgium that posted the last comment

MileMasterSarah said...

Chrissie,
I generally use between 35-40 units of insulin per day. If I'm a carb munchie monster then I'll go over forty, but only if disaster strikes will I use over 50 units of insulin per day. That is one reason why the lows in the morning are so weird is because that basal just is really really low for me. In general during the day I am either .6u/hr or .4u/hr and then at night I am 1.05u/hr or 1.25u/hr. My insulin needs per hour at night DOUBLE!

Chrissie in Belgium said...

OK now i understand why you think it is so strange with very low basal for just a few hours - b/c it is so low in comparison to ther basal requirements. Could it possibly be that the hypos are caused by less food the day before, even in the morning. I absolutely cannot vary my food from day to day. What happens at nigh can very well be influenced by a change much earlier in the day. This is kind of weird and I put it down to being weird or that i have had D so long. It is not what the doctors teach about counting carbs and just bolusing! I am even wary of opening my mouth about this because so few others will believe what I am saying is possible......

Pls do keep us informed about islet transplants. Do you understand why even those who must take insulin after the transplant DO show an improved ability to recognize hypos. I have found no explanation for this in the litterature. Don't you wonder WHY this is?

Scott K. Johnson said...

Wow! I'm glad I stopped by to check comments!

Chrissie, you have some very good points of question and concern.

I also think that Sarah, you have a good approach on it. Continue to investigate until you are comfortable making a decision, if it comes to that.

How can we ever know if the grass is really greener on the other side?

All I know for sure is that the grass is pretty brown and shitty looking on this side sometimes.

The devil you know versus the devil you don't I guess.

Go with your gut, and as MN says, may you be guided to make the best decision for everyone involved.

Anne said...

Hey Sarah,
In regards to your goals to lose weight, I've found the the only way for me to lose weight is to track everything I eat using an online log (such as nutridiary.com or fitday.com). This may be tough with everything else going on, but for me, it has really worked. If I see that a certain amount of calories/day is not working, I just lower it. It's a good reality check for me...

Also, have you heard about Dogs for Diabetics (http://dogs4diabetics.com/)?
Apparently some dogs can be trained to alert you to hypoglycemia. I don't know how big this organization is yet, but if you end up not being eligible or not choosing to go the transplant route, maybe this would be an option?