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.


Karen said...

Oh Kathy, I don't know what to say. I so admire your positive attitude. I also admire everything you've done to move diabetes treatments forward, bravely going where few have gone. I'm so sorry to hear this is the end of the road for those new islets, but I'm glad to hear you'll still be blogging. Hugs and love to you.

Kathy said...

Thanks, Karen,
It is sad, but I'm just so grateful to have had this experience. Its kind of ironic that some of the things that my transplant inspired me to become involved with have now become my safety net. Advocating for the JDRF, Donate Life Ohio, and training DADs help to make me feel better about the future of diabetes.

Scully said...

documenting your experience really helps all of us to understand more. It's for the better of everybody. I know it had to be worth 2 years of "freedom" from the burden of diabetes.
awesome. sad,.. but also awesome.

Kathy said...

Thanks, Scully,

It was an awesome experience and it did feel like a very important thing to be doing as well. It was a true win/win situation.

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