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.

Nephrologist appointment

I've been struggling lately with my body chemistry issues.  It began over a year ago when my creatinine began to increase.  My baseline creatinine is about 0.7.  When it reached 1.0, it was considered a problem.  It rose and fell for several months, but has been on a steady increase more lately.  My creatinine level is checked monthly as part of the islet cell transplant trial and is the measurement used to assess kidney function.

My potassium seems to be back down to within normal limits.  I've been taking kaexolate weekly to help with this and it must be working.  I'm doing my best with the low potassium diet.  Its impossible to follow exactly and I've been erring on the side of my low carb diet.  That helps in the present.  The low fat, salt, and now potassium parts of my diet are a result of the immunosuppressants and I don't have as much control over them.  I've decided to concentrate on the battle that I can win.

I had some pre-appointmemt labs drawn about a week before my visit.  They consisted of kidney function blood and urine tests.  I got a sneak peak at the results when I received a call from Dr. G's (endo) office saying that my creatinine was up to 1.6 and that I should contact my nephrologist.  While I was in the office waiting for my appt, I also got a call from the SDI saying the same thing.  So, I was dreading hearing what she would have to say as I waited in her office.

The visit went well.  I was pleased to see that my weight was up to 107.  We went over all of my prescriptions which takes awhile.  My blood pressure was ok, about 135/85.  She asked if my ankles were still swelling.  I showed her and she didn't think they seemed to bad.  I asked her the same question that I asked Dr. G about whether I was going to reach a limit with my drugs and their effects on my kidneys.  She said she didn't see that happening any time in the near future.  That sounded promising.  Then she said that if/when that happens, I can just get a kidney transplant.  That was a real shock to me.  I said that I certainly don't want that.  I had always assumed that if things got too bad that I would just have to give up my islets.  She didn't think that would be the case.  She would rather see me get a new kidney and keep the islets healthy.  She said that IF that would happen, that it wouldn't be for awhile.  I left feeling good for the present, but concerned and confused about the future.

I thought about it for a few days, then decided to email Dr. Bellin to see what she thought about this.  She was more in line with what I had imagined.  She replied that possible options if my kidneys do get progressively worse would be to:
1. lower my dose of Tacrolimus and hope for the best
2. change from Tacrolimus to a different immunosuppressive drug.  But this usually results in loss of islets

She also said that she has seen patients who live with higher levels of creatinine without progressing to renal failure.  These options made me feel much better.  The thought of either dialysis or kidney transplant seem much too severe to consider as a possibility.  I'd rather hope that the next phase of the cure will not involve immunosuppression and that I'll still be healthy enough when that is a reality.

So, for now, summer is here and I'm going to enjoy every minute of it without worrying over all of these numbers.

Senator update
He is now alerting to both my high blood sugars and my low blood sugars.  See my other blog about him for the details.  It's been really exciting.

My training helper

My New Normal?

I know a few family members and friends would like to have a heyday with that title.  But, I do  have SOME normal aspects.

I saw the nephrologist for my follow up appointment last week.  It has been 3 months since my initial visit and she had ordered some tests in between.  Overall, she says that everything looks good.  My renal ultrasound was normal.  My 24 hr urine was normal.  My sodium was just a little high, but no higher than before.  My creatinine was 1.1 this time, which is the same as 3 months ago, but still on a slow increase.  I asked her about this, and she said that its not really high enough to be of concern.  I must have been worrying about this, because I felt very relieved to hear her say that.  She says that the increased values are most likely due to my immunosuppression and bactrim.  Its a side effect.

This seems to be a common thread among my current abnormal lab results.  I used to have low cholesterol, low blood pressure, and normal everything that was non-diabetes related.  Now, not so much.  When I ask about dietary changes, the answers are similar as well.  Watching fat will help my cholesterol.  Watching salt and potassium, might help with my blood pressure and kidney function.  BUT, it wouldn't be enough in any of these instances.  I have to take additional medication to balance the effects of the immunosuppression.  My normals have shifted.  I can handle that.  None of the new medications have any side effects at all.  Just more pills which I am used to by now.

When the nephrologist saw on my chart that I had mentioned ankle swelling, she took a look at my ankles.  They were indeed swollen and she prescribed a diuretic.  Again, no symptoms.  Its only been a few days, but there does seem to be less swelling.  I always thought my ankles were too skinny, but I am alway glad to see them back the way they belong.

My immunosuppressant levels have been inconsistent lately.  My Rapamune is now up to 10mg/day and Prograf is down to 10mg/day.  

I was contacted by John Parkinson at DiabetesCare.net to do an article about my transplant story.  He interviewed me over the phone, and the interview is here.  I've visited this site many times and use it as a resource for news articles on diabetes topics.  I am pleased with the article and the chance to share my message here.

I just returned from a great trip to California to visit the kids.  My Mom and I had a wonderful time and the kids all seem to be doing fine and having a great time.  I only wish it wasn't so far.