Drug Transition Update 2012 #2

I'm still struggling with my drug transition issues.  Most of my lab results are better now.  My creatinine is down to 2.0 and my potassium is down to 5.5.  Both are still too high but at least going in the right direction.  My BGs are continuing to be mostly good.  The problem is that I still don't feel good.  My stomach problems are no better and I'm still running a low grade fever most evenings.  Both of these really wear me down.

My testing has all come back normal so far.  Negative for EBV and CMV.  Negative for C. diff.  My nephrologist sent me to an Infectious Disease doctor to try to determine the cause of the fever.  He ordered several tests but also said that the fever could be caused by the drugs.

I had a talk with my nephrologist who says that if my kidneys show much more distress that she will recommend that I go off or reduce the Prograf.  When I told Dr. Bellin about this, she discussed it with Dr. Hering.  The decided that before they would take me off of the Prograf, they would want a kidney biopsy to determine that the Prograf is definitely the cause of the kidney problems.

And, to determine that the Myfortic is indeed the cause of the GI problems, I'm scheduling a colonoscopy.  This can determine if there is colonitis and if it is caused by the Myfortic.

I'm not sure what will happen if the two immunosuppressant drugs that I'm taking are indeed the cause of my problems.  I've been on and beaten by all of the best drugs now.  I think that the reason for the dramatic pinpointing of my problems is that taking me off of them will be very risky to my islets.

The fever is another issue.  It occurs mostly in the evening and varies from about 99.3 to 99.6.  It really makes me feel sleepy.  I am seriously caught up on my sleep.

One interesting thing.  When I was discussing/complaining about the low potassium diet with my nephrologist, she told me that a high carb/high insulin diet will help with my potassium.  It seems that the insulin will somehow help to get the potassium into the cells and out of my bloodstream along with the glucose.  So I've increased my carbs and insulin and hope that this will do the trick too.  The surprising thing is that my BGs are still really good.  I'm eating macaroni and pancakes and bread like I haven't in years.  I was drawn today and am hoping to see some good numbers.

JDRF walk 2012

I'm also trying to get back into some exercising.  I've been trying to listen to my body and just rest, but I'm afraid my muscles are turning to mush.  I'm doing some very short walks and riding my exercise bike.

The picture is from this year's JDRF walk.  We raised over $900 and had a great time.

Stay Strong

The title is somewhat to my islets and some for me.  Things have been confusing and scary lately.

Last week, after my experiences with the pump and high blood sugars, I emailed Dr. Bellin about this problem.  She had me go back onto the Rapamune, increased the Prograf and ordered a C-peptide test to check on the health of my islets.

The very good news is that my C-peptide results showed that my islets are still functioning.  My fasting C-peptide was 0.87 and stimulated C-peptide was 1.49.  This compares to the values from July which were 0.14 and 1.59.

So, that leaves the decision as to what to do about the stress to my kidneys.  Now, I'm back on full strength of all three immunosuppressants.  And about the time that I went back on the Rapamune, I developed some severe stomach problems.  I am also running an occasional low grade fever for no apparent reason.  Between those two things, I am feeling very run down.

My BGs have been getting better.  I'm not back where I was, but am getting closer to that.  I'm increasing my basal rates untilI get them to where I need to be.

I saw my nephrologist yesterday.  This appt was moved ahead in response to my elevated creatinine levels.  I had done my pre-visit testing and those results were about the same as before with my creatinine still at 2.0.  After I told the doctor about my drug transition, she wanted to see how my creatinine was at the moment and ordered some testing to be done during my visit.   That creatinine was 2.5.  And my BUN was elevated as well.  Both are kidney function tests.  She decided to take me off of several of the drugs that I was currently taking.  The lisinopril and lasix would be replaced by a different blood pressure medicine.  Most of my over the counter supplements are on hold and I'm to take one more potassium lowering treatment and then be done with that.  She seemed alarmed by these results which worried me.  Until this point, she didn't seem overly concerned by my creatinine levels.

I am to have my creatinine and kidney function tests rechecked tomorrow and again on Monday and then I see her again on Thursday.  I'm also being tested for CMV and EBV because of my fever and fatigue.

I had the nephrologist fax these results to Dr. Bellin.  She decided to again start to wean me off of the Rapamune.  When I hold my nephrologist about this plan initially, she was surprised.  She believes that its the Prograf that is stressing my kidneys.  When I relayed this to Dr. Bellin, she agreed, but said that the Prograff/Rapamune combo was worse than the Prograf/Myfortic combo and was worth a try because taking me off of Prograff was extremely risky for my islets.  She says it might still come to that, but is worth trying this way first.

So, I am again waiting and hoping for this all to work out.  I feel better than I did last week knowing that I still have islets that are working.  I'm just hoping that this is going to be a rough chapter of my story.  I just need to stay strong.