Thursday, October 28, 2010

Islets and Insuln

I have been taking insulin for about a month now.  I began with the Lantus and then added some Novolog before meals.  My dose seems to be holding steady at 5u of Lantus/day and 1u of Novolog before each meal.  The combination seems to be working well.  My numbers have been really good.  I have been about 100 before breakfast and my postprandials are under 180 and many are in the 120-130 range.

After the initial few doses of the Novolog, I stopped getting that tired feeling.  It has only happened one other time since. It was on a day when my post breakfast reading was 108.  Its a lot like the old days when I would see a reading in that range and know I might be in trouble.

At my recent visit, my endo added a C-peptide to my tests to see how that was faring.  It was 0.34 which is low.  I wondered if the insulin that I now take might have an effect on that reading and e-mailed Janet and Dr. Bellin with that question.  The answer was that yes it does.  It makes sense that my islets would not need to work as hard now that they are supplemented with the insulin.  I hope that they are enjoying this rest and are using this time to regroup or regenerate or recuperate or whatever it is that they are needing to do.

I'm getting myself prepared for the Diabetes Transplant Summit.  My involvement has progressed.  Now I'm going to do an interview that morning along with Dr. Hering on one of the local stations.  I get overwhelmed just thinking about it, but what an opportunity.  For the chance to stand beside my hero and talk about something that I feel so strongly about, I can withstand a few butterflies.

On the research front, the Sernova corp. has signed on Dr. Shapiro of the Edmonton Protocol and more recently Dr. Sutherland from U. Minnesota.  This is the islet sheet project where a pouch containing islet cells is implanted in the person and is permeable to glucose and insulin, but not to antibodies that would destroy it.  This means that no immunosuppression is necessary and it is replaceable if/when the islets give out.  And they use pig islet cells!

We had a good time carving these.  

Wednesday, October 13, 2010

Each Islet is Precious

The title is a quote from my Endo.  I saw him on Monday.  It was an appointment with high and low points.  It began with a series of bad news.  Before I see him, I have my A1c and glucose checked and my blood pressure taken.  My blood pressure was high.  I usually run about 110/60.  I was about 150/80.  Then my A1c result was 7.1.  At my last visit there it was 5.9.  When the doctor came in and saw my A1c and my blood sugar logs, he suggested trying some Novolog (fast acting insulin) before each meal.  This is in addition to the Lantus (slow acting insulin) that I had already been taking.  His feeling was that the high postprandials were very stressful to my islets.  The Lantus was helping my fasting BGs, but was not lowering my postprandials effectively.  He is young and speaks with an accent and when he said that we have to protect my islets because "each little islet cell is precious", it really made me smile.  Thats exactly how I feel.  When I told him about my being a recipient speaker at the Transplant Summit, he was really excited.  He did some of his education in Bethesda and has fond feelings for this area.  We enjoyed a nice post visit discussion about that.  He even shook my hand for doing this.  Pretty neat.  These were the high points.

Yesterday was day 1 with the Novolog.  It paralleled the high and low points of my visit.  The Novalog worked like a charm on my postprandials.  I was 101, 112, and 93 post meals.  Perfect.  The downside was that I could really sense the insulin in my body.  At about 9:30am, I felt some low BG symptoms.  I felt tired, hungry and even light-headed.  I had to stop work because I was having trouble concentrating.  I tested and was 94.  Not what I expected at all.  The same thing happened on Sunday.  We had been kayaking and at the end I felt low.  I tested and found I was 96.  That time, I questioned the meter.  I must just be hypersensitive to these symptoms because its been so long since I have experienced them.  I'm worried about having this problem at work.  We're busy now, which is a good thing, but doesn't leave time for having to stop because of BG problems.  Hopefully, I can get this under control.  The hypoglycemia unawareness that I would experience before my transplant was dangerous, but less likely to interrupt my day.

I have been checking my blood pressure at home and its back to normal.  I think that I was apprehensive/disappointed with my A1c at the checkup.  Its amazing what the mind can do to the body.

The other downside of the insulin is that my energy level seems lower.  I could really tell on my walk yesterday.  I wasn't really tired, just not as vigorous.  Hopefully, time will help this as well.  I tried lowering my Lantus from 6 to 5 units to see if that will help how I feel.

This is a tough time for me.  Its hard facing the insulin and the feeling like my past and future are beginning to converge.  I am as always, so grateful to my support system.  Gary is always there for me.  Discussing the insulin with Janet was a sad thing, but she summoned her skills to put things into a brighter perspective.  I can email Sandra and always receive an empathetic and knowledgeable response.  I'm looking forward to seeing Dave at the Transplant Summit next month.  We can add that experience to the list that we already have in common.

This is a wonderful cornhole game that Gary made me for my birthday.

Sunday, October 3, 2010

Islet Cell Transplant - Chapter 2

After worrying over my increasing blood sugars for some time now, it has finally become apparent that the time has come to supplement my cells with some insulin.  Its mostly heartbreaking, but a little relieving.  It has become more and more stressful to see those higher numbers appearing on my glucose monitor.  I will enjoy seeing a higher percentage of good numbers.  Also, this will lead to a better next A1c.

I did my best to postpone or prevent this.  I've been exercising and cutting carbs as much as possible.  I'm now on my third painful stressed or pulled muscle.  It started with my back, then my foot and now my back/neck again.  With hindsight, I know they were all due to being overworked.  Exercise does really help, but there are limits.

So, I am now on day 4 of insulin.  I started with 3 units of Lantus per day.  Yesterday, I had some high postprandials (220s) so increased to 4 units.  It seems to be helping.  I really don't mind the injections and this is probably not enough to cause any serious low blood sugars, I just hate to give up being insulin free and having the ability to say so. There is hope that this could be temporary.  If the islets get some rest, maybe they will become stronger.  Time will tell.  In the mean time, I am still exercising and watching what I eat.  Partly in hope to need less insulin, and partly to be able to judge how the insulin is affecting my numbers.  I was able to gain a few pounds throughout all of this.  I was concerned that it might have gone the other way.  Its easy to keep blood sugars lower by not eating as much and that is so tempting to do.  And its still feels like such a privilege to have the ability to do so.  But, I was really pushing the meat, cheeses, and nuts and I guess that worked.

This is a painful post to have to write, but also an important one.  The whole idea of this blog was to chronicle my experience, the good and the bad.  Good news is just so much more fun to share.

Of course, I'm not going through this alone.  Janet and Dr. Bellin are as disappointed as I am.  We all understand each other well enough to know that we aren't disappointed in each other, or even with the transplant, just disappointed.  I get just the right mix of sympathy, encouragement, and optimism from them.  Its also so nice to be able to share this with Dave, another transplant patient from SDI.

Yesterday was my JDRF walk, number two.  I didn't have walkers for this one.  I was handing out information at the Government Advocacy booth.  I displayed my poster again and enjoyed meeting people and sharing my experience with them.  Again, it was the mothers of diabetic children who were the most excited to hear about it.  It turned out to be a cold, rainy day, but there were still a lot of people who came for the walk.  Its very heartwarming to see such dedication and support.

Here are my current fall flowers.  A new season and a new chapter.