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.

CBC.

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.

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

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.

BK virus-still in the picture

I had my kidney biopsy done and the results were mostly good.  I heard from Dr. Bellin that there was no active inflammation found which means that I can continue with this dose of immunosuppression.  She was however concerned that the biopsy did show some scarring.  She said that it might require follow up with my nephrologist.

So, I contacted Dr. Al Sabaugh's office to see what she thought about it.  I heard back through her nurse that yes there is scarring and it is most likely due to past infections.  I assumed this meant the BK virus since there was no mention of scarring with my previous biopsy.  I was told that she would discuss this with me at my next appointment.  Since this isn't for three more months, I'm assuming that she isn't overly worried.  So, I'll choose not to as well.

Just after the biopsy, I discovered that I had another urinary tract infection.  My 4th.  I had one in March that grew the same thing, coag neg Staph.  The first one was probably E. coli and the second was never cultured.  All are within the last six months.

My BGs have been running higher.  My fastings were sometimes slipping into the 120s.  When I started my antibiotic, they went back down into the 90s and 100s.  Lately, they have been trying to climb back up again somewhat.  Maybe the nitrofurantoin (antibiotic) is causing it?  This is my hope of course, and not that I'm rejecting.  Time will tell.

I'm having my BK viral levels tested monthly now.  I was just drawn yesterday.














These are pictures of our ash tree.  Its one of the very very few that have survived the infestation of our region by the Emerald Ash Borer.  The first picture was when I saw the first bud forming and gained some hope for it.  The second picture is from today.  If this tree can stand alone against an invader, just maybe my islets.....................

BK Virus update and Symlin

I'm still fighting this virus.  For the last few months, the levels have been fluctuating between gone and low levels.  Since the goal is to have it be gone, we're not quite done with it yet.  Here are the recent test results.

Date            Serum BK                                     Urine BK                                       Creatinine
5/10/13     Detectable, not quantifiable                 4.1                                             
5/23/13     Detectable, not quantifiable                 3.4                                               1.6

My 1.6 creatinine is the lowest its been in a long time.  That is a very good sign of better kidney health and I'm thrilled to see it.  My potassium was down to 4.1 which is also the lowest its been in a long time.  I no longer have to take kaexolate every week to keep it down.

The next step is to have another kidney biopsy to determine if the virus is still causing active inflammation in my kidneys.  If it is, then I will probably have to stop my immunosuppression altogether.  I'm only taking 1.5mg/day now which is almost nothing.  Since my islets seem to be functioning well, its worth having the biopsy first.  

My recent A1c was disappointingly and surprisingly high.  The previous result was 5.9.  It went from there to 6.9 and then down to 6.5.  I really expected it to be lower than the 5.9.  My BGs were very very good.  

The only clink in the amour seemed to be right after breakfast.  This is the most common time of the day to be the weak point and it always has been for me.  My 2 hour post-prandials were ok, but Senator had been alerting me before that time.  When I would check to verify that he was right, I would commonly find myself in the 200s.  I didn't worry too much about it because I knew that I would be down soon.  The few times I covered for it, I had a low before lunch.  I thought it was just a good training opportunity for Senator.

But, the higher A1c has made me look at this differently.  At my appt with my endo, I mentioned this and we decided to put me on Symlin.  Symlin is supposed to cover those peaks in BGs.  I tried to bargain the starting of symlin for going off my pump, but no such luck. I'm doing both.  Dr. Gundabolu is very conservative with my islets and I can't fault or argue with him for that.

So far, the symlin doesn't seem to be helping much.  I started with the lowest dose.  15mcg/day.  When I was still having the highs, I started adding the insulin back in and I am almost back to where I was.  I'll be calling in my BGs soon and will expect an increase in symlin.


I hope to be spending many a warm sunny day in a kayak.  Here is the first of the season.

Rx: Cross your fingers and knock on wood

The title reflects the recommended treatments by two of my doctors.  I have to say right away, that I absolutely love, trust and respect these two doctors and I thought that it was hilarious that they came up with similar ideas.

Because of this BK viral infection that I've been fighting for several months, my immunosuppression has been dramatically decreased to almost nothing.  A few weeks ago, I noticed that my fasting BGs had been creeping upward into the lower 120s which is high for me.  I've been trying to keep things very consistent so that I would notice quickly if something was going wrong.  I emailed this worry to Dr Bellin who is monitoring my progress.  I was trying not to ask "will you increase my immunosuppression if this continues?".  Her reply was that we should keep our fingers crossed for my islets through this.  She was trying not to say "no more immunosuppression".  We both know that we are more worried about my kidney function at the moment, and the lowered immunosuppression is our best hope.

Then yesterday, I saw my endocrinologist.  We were going over my recent lab results and medications. I said something to the effect of "Aren't we amazed that I'm not rejecting?".  His instant response was a big smile and to knock on the tabletop.  We both laughed and said how lucky I have been and hope that this will continue.  I didn't think about the dual responses of my doctors until I was driving home.  They are both happy and pleased with me and for me that things are going so well.  And for now, both the present and the future seem bright.  On this journey into the unknown, thats a nice place to be.

My recent lab results had some good and bad results.
My BK viral titers keep hovering between detectable and undetectable.

Date            Serum BK                                     Urine BK                                       Creatinine
4/10/13     Detectable, not quantifiable      Detectable, not quantifiable                    1.7                     
4/24/13        Undetectable                                     3.3                                               1.8

My A1c was 6.9 which was a dramatic increase from the last one which was 5.9.  I was shocked by this.  I feel that my BGs have been better, not worse in the last three months. This was repeated at the endo's office and was 6.5 which is a little better.

I am starting on Symlin which is a drug like insulin that might try to keep my morning post-prandials a bit lower.  Its the only place that I can see that I am going too high.  Senator is actually the one that pointed this out to me :)  I'll start at 15mg which is the lowest dose possible.

My C-peptide was 0.39 which is about the same as it was in March (0.37).
My CBC was all normal and included a Hemoglobin of 13.7 which is normal (12-16).
Cholesterol was 182.
Prograf less than 2.0  which was of course very abnormally low



The picture is of Gary and Cruise.  We are also keeping our fingers crossed and knocking on wood for Cruise's future.  He leaves us on Monday to begin his final training as a service dog.  We know he will be a  successful and beloved helping paw to someone special.

One less -ologist is a good thing

I had an appointment with my Hematologist yesterday.  She was called into the picture during my hospital stay when I was being treated for anemia.  My anemia was most likely a complication of my immunosuppression, but it  was important to find out the extent and the exact cause.  My first meeting with her was kind of a blur because it was a complete surprise and I was so sick and worried about the other problems I was having, so I wasn't too concerned about it.

I had three more visits after I was released and they were much more memorable.  She was seeing teardrop cells and acanthocytes in my CBC differential.  This is where my blood is put on a slide and the types and percentages of the cells are recorded.  These two types are not seen in a normal differential, so it was a concern.  She wanted to do a bone marrow on me which is a very intrusive and painful procedure.  At that point, I was just too overwhelmed with all of the other things that were happening with me and asked to postpone it.  This happened at the next visit too.  I asked for one more postponement.

My visit yesterday was much better.  She walked into the room and said that I should keep doing whatever I have been doing.  There were only a rare amount of the teardrop and acanthrocytes.  She says the bone marrow option is no longer necessary.  Yay for that.  And, no more appointment unless something else leads me that way.

So, now I'm down to just an endocrinologist, nephrologist, opthamologist, gynocologist, infection control Dr, and of course my transplant Drs.  Its overwhelming, but I can't complain about the care that I receive from all of these brilliant doctors on this amazing journey.

My latest BK viral tests showed that both the blood and the urine levels are detectable but not quantifiable.  This seems to be a good thing.  I'm one step away from being rid of this virus.  Maybe the next test will show that it's really gone.

Other good lab results included a creatinine of 1.7, a potassium of 4.5, and a hemoglobin of 12.5.

Yesterday, I had the opportunity to sit in the symbolic green chair for Donate Life Ohio which is our organ transplant organization.  Its a yearly event where they have an organ recipient or a family member of a donor sit in the chair for 24hrs.  The local media gives it a lot of publicity and hopefully encourages more people to sign up to be donors.

BK virus update

My battle with the BK virus continues, but I seem to be winning.  Fortunately for me, it there are no symptoms to this disease state.  It feel more like a battle of numbers.  And thats a good thing.  I know its more serious than that.  It can't be a good thing at all to have a virus in my kidneys and that accounts for the necessity of risking my islets by the lowering of my immunosuppression.

Here are the numbers:

Date            Serum BK                                     Urine BK                                       Creatinine
3/1/13          Undetectable                                  4.2                                                1.9

3/8/13         Low  (less than 390 log units)         3.3                                                 1.9

3/15/13       Undetectable                              Detectable, but not quantifiable        1.7

3/27/13                                                              3.3                                                1.8


This is definitely a step in the right direction.  It was worrisome enough however to cause Dr. Bellin to reduce my Prograf even more.  As of 4/2, I am only taking 1mg at breakfast and 0.5mg at dinner of Prograf.  My Prograf level at 2.5 mg/day tested at 6ng/ml.  Normal is 5-10, so I seem to be very sensitive to it now.  I don't understand what could be causing that to happen, but glad for it.

Easter pig cookies

My BGs are hanging in there.  I'm still at 9 units of insulin/day.  The weather is finally becoming Springlike and I'm hoping to be getting some more walks in.  I still feel the need to avoid the cold if possible.

My last CBC showed that my hemoglobin is up to 12.5.  No more worries about that now.  My last blood pressure was good to a 122/80.

I suffered another urinary track infection last month.  I was prescribed Ampicillin for that.  I'm not sure if there is any effects from that or not.  I'm having my BK tests done every other week now.

Turn the Page

I saw Bob Seger over the weekend, and he was fantastic!  He has always been my favorite and seeing him perform in person is really a thrill.

The title happens to be my favorite song of his and its how I feel about what is going on with my health story these days.  I feel like I am constantly waiting to turn the page to see what happens next.

I'm having tests for the presence of the BK virus weekly for awhile.  It seems to be going in the right direction.

           Serum BK            Urine BK      Creatinine
2/15     undetected             5.2                 1.8

2/22     less than 2.6          4.5                 1.8

3/1                                   4.2                1.9

I'm concerned that my creatinine has increased, but haven't heard that I need to decrease my immunosuppression.


I also had my C-peptide tested.  My blood sugars have been surprisingly good and both doctors ordered C-peptide to check on my islet function.  They have showed an increase.


                             Fasting                  Post-prandial
July                       0.14                       1.59

September              0.87                       1.49

March                    0.37                       2.17

normal C-peptide is 0.9 to 6.9

This is an interesting reflexion of what I am seeing on my pump statistics.  I still need some basal insulin to keep me from going too high.  But, I need much less bolus insulin.  I'm getting some help from my islets in controlling the increase seen after I eat.  I'm using about 9.5 units of insulin/day now.  83% is basal and 17% is from boluses.

Down and Out, playing mind games and feeling fine

My A1c is down to 5.9 and the BK virus is out of my blood.  I'm using positive thoughts to keep my islets safe.  And it all seems to be coming together.

My last tests for the BK virus show that it has been cleared in my blood  Finally.  Its not determined whether this is due to the immunoglobulin infusions I have been receiving or the dramatic lowering of my immunosuppression.  The virus is still in my urine, but is decreasing slightly.  It went from 5.4 to 5.2 log units.  I'll be having these tests done every week for a month along with a creatinine level to monitor my progress with this.  My creatinine is still at 1.8 which is stable, but still too high.

I saw my endo this week.  He was as pleased with my lower A1c as I was.  I asked him what he thought of all this, considering the fact that my islets are at such risk of rejection and he said he thinks its the power of positive thinking.  I do too and I'm going with that.  I asked about going back to injections since I am on such a low dosage of insulin, but he says not yet.

I realize that I'm in a precarious situation, but am enjoying it for as long as I can.  If the virus isn't cleared from my urine soon, I might have to lower my Prograf even more.  I'm only taking 2.5mg/day now, so that might mean going off of it altogether.  But, I have to get my kidneys into a better state of health.  I can tell that they are not back to normal because I still go so much more at night than I do in the daytime.  Its strange and impractical.

As illustrated by my A1c, my BGs have been quite good.  I'm at about 10 units of insulin /day.  I'm enjoying this process of seeing my insulin needs decrease.  They haven't changed much in the last few day, so I may have reached the endpoint.  I might see another small drop once this weather improves.  I'm not walking in the freezing cold temperatures this year.  I'm too afraid of getting sick at this point.  I'm enjoying this new state of health too much to risk any step backward.

Senator has been getting some good practice with lows while my BGs are on this downward trend.  He's doing very well with his training.

No Save November

November has come and gone and most of my issues are resolved.  But I still have a few to go and they are complicated.

I had a colonoscopy, a blood transfusion during a long hospital stay, and finally a kidney biopsy at the end of the month.  The switch from Myfortic to Imuran has resolved my stomach and fever issues.  That helps a lot.  Of course the transfusion solved the anemia problem.  But, I'm still not there yet.  My kidney function tests are still abnormal.  And despite the elimination of the energy depleting problems that I just mentioned, I still tire very easily.  I've developed a strange headache that seems to be triggered by motion.

The kidney biopsy has yielded a surprising result.  It was done to determine if it was the Prograf that was causing the stress to my kidneys.  It turns out that I have a viral infection in my kidney of the BK virus.  Its common in kidney transplant patients.  The treatment is lowering the dose of immunsuppression.  My doctors will be discussing how to treat this later today.

my soap

My blood sugars have been running higher lately.  I'm up to about 20 units/day now.  I think that part is due to my lower level of exercise.  I just don't have much extra energy right now.  That seems to be getting better and now I'm wondering if the kidney infection might be a factor in that.

I did have a few nice things in November.  I had a good time learning to make soap with a friend and we have a few good batches to give out for Christmas.

And, I was made the Advocacy Team Chair(ATC) of the Northwest Ohio Chapter of the JDRF.  I haven't been able to do much so far because of all of the above, but I'm excited to do this.  I'm attending the walk awards ceremony this week and am hoping to meet some of the Toledo JDRF board and find out how I can fit in.

December is here now, and my goal is to get back to a normal live before the end of it.