Islet Cell Transplant at 5 1/2 Years

Its now been 5 1/2 years since I had my islet cell transplant.  Here are the lab results from this point in time.  They are very similar to those of my 5 year checkup.

Chemistry tests.  

Cholesterol is 180.   HDL is 83.   LDL is 83.

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 is up from my previous 1.6

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.

CBC.

WBC is 4.1 and absolute neutrophils is 2.8

Hemoglobin is 13.1   normal is 12-16

I'm holding steady here.

Islet function tests

A1c is 7.1  This is exactly what it was 6 months ago.

Before Breakfast:   BG is 113.   C-peptide is less than 1

After Boost:            BG is 361  C-peptide is 0.2

I had some C-peptide testing done in September too.

Before Breakfast:    BG is 99    C-peptide is less than 1

After Boost:            BG is ?      C-peptide is 0.1

Just about the same.

My tacrolimus level was 2.7   normal is 5-10

It was 4.0 in September.  3.2 in October.

4.3 in November.  6.0 in December. 

Its so surprising to see it stay so high at my present low dose of 1.5mg/day.

I'm still having my BK Virus titers done monthly.  I can't seem to get rid of them, but they seem to be remaining at lower levels.

In November, the urine was 4.3 and the serum was less than 2

In December, the urine was equivocally present and the serum was less than 2

In January, the urine was 4.0 and the serum was less than 2

I'm taking about18 units of insulin/day and 30mcg of Symlin with each meal.  

Good times in California

I have had a few Staph infections and one more UTI (E. coli).  But other than that, I've been healthy.

Snowy days at home

Islets statistically present

In the past few months, I've been concerned about the health of my islet cells.  My blood sugars and insulin needs have been on the increase.  Its been more and more difficult to keep my blood sugars under control.  My lab results have been telling the same story.  My fasting C-peptide was undetectable and my A1c had climbed to 7.3.

To give my islets a chance of detection, a post-prandial C-peptide was ordered.  Its always a little higher because the islets are working harder after a meal.  This test showed a C-peptide of 0.1.  For comparison, my last post-prandial was 0-6.  When my islets were new, it ran from 3-6.

So, this was not good news.  I suppose an undetectable result would have been worse, but this is probably the lowest possible detectable amount.  I had an appointment with my endo last week.  He agreed that it didn't look good.  But then he looked at a scatter plot of my blood sugars from the last three months.  The standard deviations around the points was also given.  He said that my variation looked more like that of a Type 2 diabetic than a Type 1.  So, he thinks I still have some islet function.  This is good news.  It means that I'm still getting some help from my islets, and I'll take whatever I can get.

My A1c was 6.8 which is better too.  I'm sure both of these readings were elevated due to the stress of the infections that I was dealing with.

So, I'm in a kind of limbo at the moment.  I would never give up hope, but I can see and understand what is probably happening.  Another chapter in my amazing islet experience.

Ironically, I feel fine now.  After a very LONG chain of various health events, I seem to be through almost all of it.  I still have the BK virus, but that has no symptoms.  My energy level is less than it was when my islets were functioning at a higher level.  I do miss that.  My creatinine is down to 1.6 and I don't need to see my nephrologist for 8 months.

Senator is getting a workout alerting to my highs and lows.  That part is fun and exciting.  I'm very pleased with his progress and feel that he will be a help with my health.  The cuteness of his alerts and the pride I take in our training of them really helps to dull the sadness of the need for his alerts.

Back to Back Bacteria

It seems that since my immunosuppression was decreased, I've had more infections than when they were at full strength.  It seems very ironic, but is probably just some bad luck.

While we were on vacation this summer, I got a very small infection on the base of my thumb.  I woke up with a little blister which I popped and treated with neosporin.  It got worse as the day progressed and I seriously considered going to urgent care that evening.  But that seemed premature.  It was only one day old and I thought I should give the neosporin a chance to do its job.  My morning it was much worse and we did go to urgent care.  They prescribed Bactrim and sent me home.  Two days later it was worse, so I called and they put me on Cipro.  It continued to get worse.  My hand looked like a blow-up glove and the swelling was half down my arm.  So two more days, I went to the ER.  They sliced it open, put antibiotic and a hydrogen peroxide treatment into it to clean it out.  I was also put on Clindamycin.  It was cultured and identified as Staph aureus, but not MRSA.

This seemed to work.  I had to leave the wound open for several days and continue the hydrogen peroxide treatment on my own which was no fun, but it was getting better.  After a few weeks, the swelling went down and I was back to normal.

Then, in early October, I came down with a fever and diarrhea.  It didn't clear on its own so I went to the doctor.  It turns out I have C-diff.  Its a bacteria that takes over when a person has been on antibiotics for awhile.  It was probably the Clindamycin that caused the C-diff.  Its unusual to have that long of a time-span between, but possible.  So, I was put on another antibiotic, Flagyl and that seems to have done the job.  I tested negative for C-diff last week.  I'm feeling better and my blood sugars are coming back down.  They were really high during the C-diff experience.

Now the worry is about my islets.  I had my quarterly labs done last week.  My C-peptide was undectable and my A1c has increased to 7.3.  Dr. Bellin is having me do a stimulated C-peptide to see if there will be any C-peptide activity after having some carbs.  I'm very anxious to see how this comes out.

Lab results from islet cell transplant at five years

Here are the lab results at 5 years post transplant.

Chemistry tests.  

Cholesterol is 181.   HDL is 84.   LDL is 87.

These are all good and an improvement from last year.

AST is 23.   Normal is 10-42  
All my hepatic function tests were normal
Total protein is 7.1 and Albumin is 4.2    both normal

My potassium is back to normal now and I no longer have to take kaexolate to lower it.  I am still following a low potassium diet, but not as stringently.

Kidney function tests.

Microalbumin is 0.7    Normal is less than 1.9

Creatinine is 1.6  Normal is 0.5-1.3  At 4 years, it was 1.7.  So after all that I've been through this year, I'm back to where I was before it began.

Glomerular Filtration Rate is 34    Normal is greater than 60.  At 4 years, this was 31, so again slightly better

This puts me into the bottom of Stage 3 Kidney disease.  Its based on the creatinine level which is elevated.
My Blood pressure was 110/70.

CBC.

WBC is 4.2 and absolute neutrophils is 2.6

Hemoglobin is 12.8   normal is 12-16
Its good to see this number back to normal after my experience with anemia

Islet function tests
A1c is 7.1  This is higher than its been this year.  Its most likely due to all of the infections that I've been fighting this year.  (5 UTIs, recent one on my hand, and the kidney viral infection).  

Before Breakfast:   BG is 153.   C-peptide is 0.2

After Boost:            BG is 313  C-peptide is 0.4
Compared to last year, the post prandial is much lower.  This is disappointing and worrisome.  My blood sugars are running much higher and my insulin requirements have increased.  This could be the reason.
I now take about 14-15 units of novolog/day.

My tacrolimus level was 2.2   normal is 5-10

Because of the viral infection, I have to remain at this very low dose.  Dr. Bellin says that increasing my immunosuppression would most likely allow the virus to gain strength and we can't allow that to happen.  It is certainly a worry especially while my blood sugars are increasing.  There is nothing I can do except to try to manage them as well as I can.  I'm trying to look at it as positively as I can.  Instead of worrying that I'm rejecting now, I'm saying why am I rejecting now after all this time at the lower dose?  

Needless to say, I hold my breath at each BG reading.
At 4 years, I was taking 10 units of lantus and 1 unit novolog/meal.  So that's really not that far from where I am now.  

My BK viral titers have been fluctuating, but trending downward.  The latest test showed undetectable in the serum and 2.6 in the urine.

Islet Cell Transplant at 5 years

Its a cold rainy day in early August and a good day to sit down and ponder this last year.

This last year has been all too eventful.  I've seen the down and dirty side of immunosuppression and its side effects.  I'm a long way from mouth sores now!  I've had anemia that led to getting a transfusion of 3 units of blood.  Diarrhea that led to a colonoscopy.  And a viral infection in my kidney that led to an inpatient antiviral infusion and then more as an outpatient.  Immunoglobulin therapy. Two kidney biopsies.  And finally, the drastic lowering of my immunosuppressant doses and hoping for no rejection of the islets.  I've now had 5 urinary track infections and just recently an infection on my hand that led to the ER, three different antibiotics and some more time off work.  I started back on the pump and have watched my blood sugars go crazy through out all of this.  And rightly so.  I also am trying symlin to help keep my morning post-prandials lower.

I now have a endocrinologist, nephrologist, infectious disease dr, and of course my transplant and general doctors.  I'll be adding a urologist next week because of the UTIs.  I did have a hematologist, but have been released from her.  So, I've had a few doctor appointments this year as well as a few urgent care visits and two stays in the hospital.

While I'm at it, I've also had some shoulder muscle strains that had me almost immobilized for awhile and a strange pain in my foot that really bothered me and sometimes still does. I've had to adopt a low potassium diet which I hate and which runs counter to a low carb diet.  These things along with the UTIs really bothered me more than the other things because it just seemed so unfair to have them while I was already dealing with so much. I don't really mind the things that are directly involved with or caused by the transplant.  None of that will ever offset the positives that I have gained from the transplant.  And I do think that some of the things that have caused me pain and harm are adding to the wealth of information on the whole process.

Its still amazing that I haven't totally rejected my islets throughout all of this.  I have all but given up hope several times.  And they keep coming back.  Even now my BGs are running high and I'm wondering...

I'm very pleased and proud to have made it this far.  My islets are tough, but I think I have learned a lot about keeping myself strong and healthy in the face of adversity throughout this year.  It hasn't been my easiest year, but I honestly have no regrets.  I'm very luck to have the good insurance coverage that I do.  I don't think I would feel this positive if I had to carry the financial part of this experience.  I'll give them a shout out after the statute of limitations runs out.  I'm thinking I might be flying under the radar now:)  And of course, Gary has been so strong and supportive throughout each turn of events.  I couldn't have done this without him.

July 21, 2013

So, happy 5th anniversary to me and my new islets.  As crazy as this year has been, and reading back over what I have just written has caused me to gasp a little, I still say this is easier than a year with Type 1 diabetes.  I never once lost my ability to concentrate at an awkward moment, or had to stop playing a game or enjoying a conversation or stop what I was doing at work.  And more importantly, I have hope for the future that I didn't before my transplant.  Hope can make the little things seem tiny.

I'll be posting my 5 year lab results soon.  Hopefully, on a warm sunny day.