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

The Moms of diabetes

I'll be combining two Diabetes Blog Week topics today.  Today's topic is "what they should know" about diabetes.  Sunday's topic is Diabetes Heros.  Moms of diabetic children fall easily into both categories.

Since my transplant and getting to know more diabetics, I have had the pleasure and opportunity to meet several of these moms.  I was diagnosed at age 24, so I don't have experience with this from my own Mom's perspective.  Its something that I never really thought about before.  It was a real shock when I discovered how a diagnosis of Type 1 diabetes can turn a family's life upside down.  Its hard enough to manage when you have your own biofeedback.  I can't imagine having to judge by behavior when a child's blood sugar must be out of whack.  It would be a constant 24/7 worry.  And a real worry.  The statistic that came out in November shocked the whole community.  1 in 20 Type 1 diabetics will die of low blood sugar.  This must have sent waves of shock through these moms.  They knew that this could happen, but at that rate?!  I have no doubt that that fueled the fires to wake up even more to test blood sugars of sleeping children.  I've heard people say that every morning when they go in to wake their child up that they are literally holding their breath, and hoping to find their child breathing.   I can't even imagine going through that each and every morning.  What heros they really are.

This has been most of my motivation in learning to train diabetes alert dogs.  I think that this could really make a difference.  Maybe more Moms (and dads) could get more sleep.  

Islet cell patch

The assignment for today in the third annual Diabetes Blog Week is to tell about your fantasy diabetes device.

Well, my device is only slightly mechanical, but should do the trick.  Its modeled after Sernova's islet cell pouch system, but takes it a bit further.  My device is a patch that is similar to a nicotine patch.  It is removable and discreet.  It is easily applied to any area of the skin.  It holds an incredible amount of islet cells (pig), that were created to be able to elude the body's immune system.  No immunosuppression is necessary.  Its only electronic function is to perform a weekly C-peptide.  When the C-peptide value decreases to a minimal value, the patch will be removed and replace with another.  Glucose monitoring would not be necessary because there would be no significant   fluctuations in blood sugar anyway.

They would come in various shapes and colors.

Mine would look something like this.  Maybe in green.

If you don't already follow Joshua Levy's blog, you should!

"You should" are words that I try to avoid saying in conversation, and would rarely put into print.  But for this I'll make an exception.



Its the third annual blog week that was created by Karen at Bitter~Sweet.  I plan on writing on a few of the topics.  The first topic is "Find a Friend".  The  assignment is to introduce a blogger that I read and would like more people to know about.

I didn't have to think long on this one.  I've been following Joshua Levy for a few years now.  In his blog, he is constantly scrutinizing the research for the cure of Type 1 diabetes.  He is the parent of a Type 1, so his motivation to do this is obvious.  He has a clear definition on what he considers to be the cure and keeps track of the clinical trials as they progress towards this goal.  He writes scientifically, but impartial.  He gets excited by the ones that are making progress and you can feel his disappointment when the results are negative or inconclusive and an avenue reaches its endpoint.  He writes a little over my head, which I like.  I always learn something.

He also gives credit to where the funding comes for these trials.  I made a poster for my JDRF walk which shows which trials are funded by the JDRF.  It got a lot of attention and served to encouraged people to want to donate more and educate some on what is happening in the research field.  Most people don't have specific knowledge of what is happening and how close we are.

Here is the link to his blog.  I hope that you will find the same inspiration here that I have here.  Many thanks to Joshua for the long hours that he must put into creating this very useful and insightful blog.

He also recently created a new blog about the many times that mice have been cured of Type 1 diabetes.  Also very interesting and must be a good way to air frustration with this seemingly false hope.

Brenda Novak's auction for diabetes research

Brenda Novak has a son with Type 1 diabetes.  Like most mothers of Type 1s, she finds his predicament to be intolerable and wants to do anything she can to help him to be free and healthy.  A few years ago, she created this  auction to raise funds that might one day provide a cure for her son and all who suffer from diabetes.

Here is a link to her auction.  It continues through May.
http://brendanovak.auctionanything.com/Home.taf

Welcome to Brenda Novak's Annual Online Auction for Diabetes Research. So far, we have raised over $1.3 million (cumulatively) — and hope to break $2 million in the near future. In order to make that happen, we are doing everything possible to set a new record this year.
The auction is NOW open and will run through May 31st. Don't miss the fun — this is such an easy way for us to join together to make a difference!