Saturday, May 26, 2012

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

Friday, May 18, 2012

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.  

Thursday, May 17, 2012

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.

Monday, May 14, 2012

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.

Thursday, May 10, 2012

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.

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.
 Brenda with her son, Thad
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!

Thursday, May 3, 2012

Endo visit with better labs and my incredible Golden

I saw my endocrinologist recently and feel much better about how things are going.  I've been worried about my recent rash of out of range lab results and was expecting to have a very serious and possibly discouraging visit with him this time.

The visit began well with my blood pressure at 170/80.  This is good considering that my lisinopril had been reduced since my previous visit.  My A1c was 6.0.  This is up from 5.8 three months ago, but is still quite good.  My C-peptide was 0.53 which is up slightly from the last visit.  Normal C-peptide is 0.9-6.9.  So I'm below normal, but still have some.  It still amazes me at how much a small amount can help make life so much easier.

Next we discussed the chemistry values that have had me so concerned.  The good news is that my potassium is down to 4.7.  Normal is 3.5-5.0, so I am back in range.  I was at 6.0 as of the last testing.  I've really been struggling with the low potassium diet, so I'm glad to see it back to normal.  Dr. G. agreed that it was probably a result of the lisinopril.  The bad news was that my creatinine was up to 1.6 which is the highest its been.  That prompted a call to the nephrologist.  She wasn't overly concerned and has ordered another draw to see if it will come down.

I asked Dr. G. if all of this was leading to  a brick wall where I was going to have to choose between my islets and my kidneys.  He said no, that he thought I would probably come back to normal.  I was surprised and very relieved to hear this.  He's more pessimistic than me (which is a good thing), so this has really put me at ease.

My cholesterol was at 226 with an LDL of 117.  So now I am taking 20mg of Lovastatin instead of 10mg/day.  My HDL was at 95 which probably accounts for most of the high cholesterol.

Senator has been progressing nicely with his DAD training.  He now alerts me to my lows which is really exciting.  I don't have too many of them, and they really aren't dangerous lows, so I can really enjoy the process.  I'm just now starting to introduce him to the high BG scent.  Hopefully, that will go just as smoothly.  The highs will really be of more use to me at this point.  The high BGs are stressful to my new islets.