Tuesday, May 13, 2014

Fired Up for Clinical Trials

Its the 5th annual DBlog week
Day 1

The topic for today is:  What gets you fired up?

For me it would be participation in clinical trials.  My focus on diabetes since my transplant landed me in the heart of the research has been on finding the remaining path to the cure.  And the only road that I can visualize will depend on people signing up to participate in clinical trials to show that the research is indeed on the right path.

I'm not suggesting that anyone do anything that is dangerous.  These trials are set up to be successful.  There are health assessments and inclusion/exclusion criteria that screen out anyone who might not be healthy enough to withstand the treatment(s).

Another benefit of these trials is the amount of intensive health care you receive during the trials.  The doctors and nursed are very focused on what is happening both directly and indirectly from results of the treatment.

The trials usually pay for the medical expenses as well, so this is not a financial burden.  My insurance picked up the costs after the initial part of the trial ended very routinely.

And the biggest and most exciting benefit is getting to experience the benefits of the treatments much earlier than if you wait for it to become available to everyone.

I acknowledge the risks of this.  There are no guarantees.  But after doing some research into the procedure and the reputation and results obtained by the doctors and institution that you are involved with, it can be a very non-scary and extremely rewarding experience. 

Thursday, May 8, 2014

My Islet Cell Transplant - I had a great run

This is the post I hoped I would never have to write.

I just reread this post and it really was not a sad post to write.  I enjoyed every minute of this experience.  The good and even the seemingly bad.  I have zero regrets and lots of good memories.  This experience has allowed me to meet so many interesting people and to do so many interesting things.  These things, I know, will continue indefinitely.  

I took my last immunosuppressant pill a few days ago.  That is the signal of the end for my transplanted islet cells.  They allowed me over two years of living my life without insulin and three more with a small dose.  It was one of the greatest gifts that I will ever receive.

During this last year, I experienced a few events that had to take precidence over the care of my islet cells.  The immunosuppressants caused some kidney stress and anemia which required a dramatic decrease in dosage to keep me healthy.  It was scary and disappointing at the time, but definitely necessary.  I also contracted a virus in my kidney, the BK virus, which did not respond to antiviral treatments.  I have been gradually decreasing my immunosuppression in hopes that I would clear the virus this way.

The anemia and kidney stress did get better, but the virus is still there.  I'm hoping to see it gradually fade away.  At this point it is only a worry and causes no symptoms at all.

Now I seem to back to where I was before my transplant in most ways.  I take about 18 units of insulin along with Symlin.  I don't have much control over my glucose swings.  I do seem to have some hypoglycemic awareness.

Its sad to have this amazing experience come to an end.  I miss my islets and the lifestyle that they enabled every day (minute).  This new (and old) way of life seems rediculus in comparison.  I know I can do this because I've done it before and I will be fine.  I feel so extremely lucky to have had this five year vacation.  It was more than I could ever have hoped for.  I hope to one day experience this level of good health and freedom again.

I'm probably going to redesign my website.  I have a few ideas for some changes.  The last two photos are pig islets.

Here are my latest lab results.

Chemistry tests.  
Cholesterol is 186.   HDL is 87.   LDL is 88.  Triglycerides 54
These are all good and almost identical to 6 months ago.

Kidney function tests.
Creatinine is 1.7  Normal is 0.5-1.3   This seems to be holding steady at this level.
Glomerular Filtration Rate is 31    Normal is greater than 60.   This is slightly down from 34 six months ago. 
This puts me into the bottom of Stage 3 Kidney disease.  Its based on the creatinine level which is elevated.

WBC is 3.9 and absolute neutrophils is 2.4
Hemoglobin is 13.4   normal is 12-16

Islet function tests
A1c is 6.9  
C-peptide was 0.1

My tacrolimus level was less than 2   normal is 5-10
I was on 0.5mg/day at this point.  At one time I took 12mg/day

BK viral levels
Serum- detectable, but not quantifiable at less than 2.6
Urine - 4.4

These values will be considered my post-transplant normals I suppose.  It will be interesting to see if my creatinine will decrease towards my pre-transplant level of 0.5

Here is a comparison between pre-transplant and post-transplant (current) labs.

                          PRE     from 7/20/08                  POST
Cholesterol          133                                            186          I'm now on Lovastatin
HDL                      65                                              87
LDL                       63                                              88
Triglycerides         26                                               54
Sodium                139
Potassium            4.0
Chloride               107
BUN                      14
Creatinine              0.49                                            1.7
GFR                   greater than 90                               31
ALT                      72
AST                      33

WBC                    5.8                                               3.9    I just stopped all immunosuppression
HGB                   13.3                                              13.4
abs neut               3.3                                               1.0

A1c                      7.7                                               6.9
C-peptide           undetected                                      0.1    

Microalbumin         3  
I will fill in these results when I get them done.