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.

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.

My Diabetes Art (and some pigs)

Today is Diabetes Art day for the Diabetes Blog week assignment.  I'm not a very artsy person, but I did create these two t-shirts.


This one is for my JDRF walks.

And this one was created as a gift for the transplant team.  I gave them theses shirts while I was there for my one year check up.


Can you spot the hidden pigs in both?

Accomplishments Big and Small

The next topic for Diabetes Blog Week is Accomplishments- Big and Small.

Well, my accomplishment is realized in hindsight.  Now that I am controlling my blood sugars with the help of my islets and some insulin, I realize how difficult it was before I had the help of my islets.  Looking back, I don't know how I did it.  Since I couldn't control or predict what my BGs would be, ever, I assumed that I just wasn't doing something right.  It was frustrating and at times, discouraging.  Since quitting is not an option, I just felt that I was plodding along hoping for better technology or some great insight that would help me figure out how to make things better an easier.

After my transplant while I was insulin free, things were simple.  The islets did all the work and no mathematic or strategic calculating was necessary.  It was when I needed to go back to using some insulin that I realized how much I actually knew about controlling my BGs.  And more importantly, how the math can work. If 0.8units is what should control my post breakfast blood sugar, it will.  I can see the benefits of exercise and I can tell how long my walk should be to replace part of my insulin needs.  While I was going through my illnesses this winter, I could adjust my insulin upwards to cover.  And after my immunosuppression reduction while my blood sugars were coming back down, I could reprogram my pump to meet these changes as well.

There are still some challenges and a few surprises, but they are explainable and easily remedied.  Frustration never enters the picture.

So, my accomplishment is in keeping myself healthy enough to qualify for this transplant   while my predicament was anything but simple.  What a payoff for some hard work.

Diabetes Memories

The topic for today in the Diabetes Blog Week is Memories.

My memory is of the day that I went completely off of insulin after my transplant.  It had taken 59 days to get to this point since my transplant, but I never had a doubt that I would make it "all the way".  I had been watching my insulin need slowly decreasing as my new islets were gaining their strength this whole time.

The day that I chose was destined to be a fun day anyway.  We were going to Put -in Bay with some friends of ours to spend the weekend.  I knew that I would be getting plenty of exercise and would be able to be focused on how I was feeling.  So, that morning I didn't take my injection of Lantus which at that point was down to only 2 units anyway.  It was both exhilarating and scary at the same time.  I felt free, healthy, and extremely lucky.  I held my breath every time I checked my blood sugar.  It just didn't seem real.  Its been almost five years since I had my transplant now, and sometimes it still feels like a dream.

The day went very well.  My BGs were normal and my energy was amazing.  It was a day that I enjoy thinking back to and am sure that I will never forget.

My wish is that the rest of my diabetes community will have this experience and soon.

Its the 4th annual D-blob week.  I like this idea because it brings so many interesting people together and I enjoy seeing the various viewpoints on the topics.

I'm beginning with one of the wild card topics.  The topic is "What is the ideal diabetes service animal?"  The idea of course is to be creative as far as which animal to choose.  Well, I'm a bit prejudiced on this.  I can't imagine a better animal than a Diabetes Alert Dog.  But, I could add a few characteristics that I think might add to its abilities.

The qualities that make dogs the perfect service animal, also can lead to some of the difficult issues of having a service animal.  They are so cute and cuddly that some people seem to have no choice but to come over and pet and love your dog.  Usually, this is fun and flattering, but sometimes it is an interruption in what you are trying to accomplish.  While I had Senator on vacation in Daytona Beach last year, this was a constant issue.  He was of course the only dog within this very large complex and many people acted like they had never seen a dog before.  Seeing Senator also made them extremely homesick for their own dog.  I can't tell you how many cell phone pictures of dogs were held up for me to see.

So, my perfect service animal would still be a dog.  You just can't beat their intelligence, loyalty, and companionship.  But, they would come with an invisibility cloak for those times when you wish they didn't stick out so much.  And they wouldn't shed.  Or want to go out in the rain.

This picture of Senator is my best argument for why a dog is the best diabetes service animal.  Who could resist this?

He is doing well with his training.  He alerts to my high or low blood sugars and is learning to distinguish between them.  It is an amazing thing to see.

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.

JDRF Government Day 2013

I have just returned home after my second experience with JDRF Government Day.  It was again a very informational, social, and fun few days.

view from my hotel room

with Jeffrey Brewer and Angel

The purpose of Government day is to educate the JDRF advocates on the current legislation that involves diabetes topics and then to go to the hill and attempt to convince the legislators of the importance of these issues.  The JDRF was formed in 1970 by parents who could not stand the thought of their children living with this disease for their whole lives and decided to try to raise the money necessary to bring the cure.  Unfortunately, the cure has always been perceived to be 5 years away and there are some disappointments with this.  But, no quitters and the group is a very driven commodity.  More recently, the proportion of Type 1s to parents of Type 1s has increased.  Probably mostly because now the Type 1s have become adults and partly because Type 1 diabetes is more in the open and more people like me have joined late in the game.

This year was a little different for me because I had a companion.  I nominated one of my trusty Promise meeting delegates to go with me and she was accepted.  It was fun having Angel with me and I think she enjoyed it as much as I did.

We tavelled to the Detroit airport in snow and slush and arrived in Washington DC to warmth and sunshine.  It was a good omen and we began our visit with a walk around Arlington cemetery.  From then on it was a very nonstop weekend.

The first thing I did was to find and meet my transplant twin.  Julie and I both celebrate July 21st as our transplant anniversary.  It was a thrill to meet her and when our story was discovered, we were interviewed by the JDRF media team.  I'll post it here when I get a copy.

We had a meeting with Jill, the regional JDRF advocacy leader to learn what was happening both here and locally.  Then it was time for dinner and introductions to the DC staff.  

Dinner out with the regional group

with Camille between meetings

my transplant twin

The following morning, we learned more about the Special Diabetes Program which was renewed at the end of 2012, but only for a year.  We would need to ask for this important program to be continued again.  It provided $150 million/year for cure research and its continuation is important so the the research can continue with no gaps.  The Promise to Remember Me campaign will begin again in August as well.  

Since I am an new ATC (Advocacy Team Chair), I went to some sessions with information on how to do this successfully.  I need to form a team to help me with this.  Our main focus is recruiting more people to become JDRF advocates who will approach their Representatives when there are important issues at stake.  I attended a session on how to find and utilize these advocates and one that will help me maneuver through the website.  Angel is set to be my Recruitment manager and I'll try to find one or two more interested people for other roles.

Monday morning began with a talk by Jeffrey Brewer who is the CEO of the JDRF.  I've seen him before and he always does a nice job of telling about which research projects we are working on and why its important to our cause.  Since I have met and listened to the plight of so many parents of Type 1s, I am more agreeable to the necessity of the Artificial Pancreas Project.  

Then, there was a Power-Point discussion between Jeffrey Brewer and the head of the research.  It was just awesome.  Last year, I was disappointed because some of the statistics on islet cell transplants were off and negative.  This year, they had them right  and mentioned that 50% of patients made it to 5 years with no insulin.  There was also interesting work being done with smart insulin, encapsulation, genetic studies, regeneration, and TrialNet.  All of these directions towards the cure were presented as being helpful and hopeful and not extremely far away.  It was a very positive and motivational morning and I think we were all in the right state of mind to go and speak with our Representatives.

Our senate meetings went well.  Neither Senators Brown or Porter could be there, but we met with their aides who will deliver our message and reading materials to them.  Sen. Porter's aide turned out to be a physician who knew about islet cell transplants as well as the son of a Type 1 father.  So, it was nice talking to someone who knew and understood our plight and goals.

That evening we went out with our regional group to dinner.  It was a nice meal and a very interesting group.  We had a good time.

The next morning, we packed up and headed back to the Hill.  This time to speak with our local Reps.  We did get to meet Congressman Jordan, but the other 2 were meetings with aides.  They seemed receptive and we can only hope that they will pass on our messages as efficiently as we would have.  If not, we will make up for it at the Promise meetings this summer.  :)

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.

My Strong Islets!.....??

I feel a little bit as if I'm in some kind of purgatory.  In the effort to fend off this BK virus, I'm taking only a small fraction of my normal dose of immunosuppressants.  I was taking 12mg of Prograf/day and 50 mg of Imuran.  Now, I take 2.5mg of Prograf and no Imuran.  It is a gamble to be at such a low dose, but its a necessary step in treating this virus.  The antiviral didn't work and I'm gathering that the immunoglobulin treatment doesn't have great stats of success.

It is and was a very scary thing to have to do.  At first, it really felt close to having to give up on my islets.  The good news (for now) is that they seem to be holding on.  In fact they are awesome.  My BGs are rarely over 90 fasting or 120 for post-prandials.  My insulin requirements have been on a steady decline at the same time.  I'm now using between 11 and 12 units/day.  The biggest difference seems to be at mealtime.  I rarely bolus over 1.0 units and usually only 0.5 units.

My viral titer has been decreasing as well.  It started at 5.5.  It decreased only to a disappointing 5.0 after two weeks of the antiviral drug.  After 4 weeks, it was down to 4.4 and last week it was 3.9.  The titer is measured in log units, so the decrease is more than these numbers would indicate.  But, the goal is to get it down to 0, so there is still a ways to go.  I was drawn earlier this week and am anticipating that result.

I've returned to some walking and some socializing. I've even gained some weight back.  So life is good again.  I feel that I will continue to get better.  The question is what stage of me am I returning to?  The healthy but diabetic one, the transplant recipient with strong again islets, or somewhere in between?  I'm a true experiment.  And I like that.

Treating the BK virus with lowered immunosuppression

I just had my second week of immunoglobulin treatment for the BK viral infection.  The infusion is easy, just takes more time.  This virus has felt like a full time job lately.  I'm anxious to be done with that aspect of it.

Dr. Bellin, after discussing my situation with a Nephologist and ID doctor in Minnesota has decided to drastically decrease my immunosuppression.  Before the virus was discovered, I was taking 50mg of Imuran twice a day, and 6mg of Prograf twice a day.  Now, I'm not taking any Imuran at all and I'm only taking 1.5mg of Prograf twice a day.  It was a little shocking when I was told this, but I understand and agree with this decision.  My kidneys are in trouble.  And they must be put ahead of my islets.

Its been almost a week since I started this reduction.  The very interesting thing is that my blood sugars have been very good.  Lower than they have been in a long time.  And my insulin requirements are decreasing at the same time.  I've dropped from about 18 units/day to 16 units/day.  And my appetite has dramatically increased.  I feel hungry much more often and am eating more at each meal.  I'm probably gaining weight.

I'm not sure what to make of this.  Its certainly not what I had expected.  My theory is that without the immunsuppression, my body is under less stress.  Less stress has always led to better blood sugars.  I just have to hope that my islets are safe throughout all of this.

My last labs were good.  I was very worried because I had a low hemoglobin level in the previous draw.  I was down to 9.5.  Normal is about 12-16, so this is not good.  I was warned by the pharmacist that Imuran can lead to low hemoglobin and I was worried that I might have to deal with that again.

This last hemoglobin result was 11.2 which is much better and going in the right direction.
My lipid panel was all normal.
My creatinine was 1.8 which is still too high.
My A1c was 6.8 which is higher than I like, but understandable considering all that I have been through in these last few months.  The next one WILL be lower.

at the San Diego zoo

My cold is about gone now.  I'm feeling pretty good.  We are experiencing some really cold weather at the moment, but as soon as it is past, I'm hoping to start walking again.

Treating the BK virus with immunoglobulins

Well, the Cidofovir didn't seem to do the trick.  I still haven't heard how the last viral load test for the BK virus came out.  But, since I've been moved on to plan B, I assume not so good.

my lovely picc line

The new treatment is to have immunoglobulins administered through my picc line.  The immunoglobulins are antibodies to the BK virus that are somehow manufactured.  They are not directly from people.  I asked about this because if it was from people, I would have to worry about receiving more antibodies.

The treatment will consist of five weeks, one day a week of infusions.  The infusions should last just a few hours.  I just had the first session and did fine.  My blood pressure was increased for part of it, but seems to have come back down.

Here is a paper that looks at several typed of treatment for the BK virus.  I'm on my third try.  I've reduced my immunosuppression, tried Cidofovir, and am now trying the immunogobulin treatment.  I do have to wonder why this is plan B behind the toxic treatments of Cidofovir.  I'm assuming its stats aren't as good.  Hopefully, my experience will raise those statistics some.

Besides all of this, I've caught a cold.  I've had it for about 10 days now.  Its an upper respiratory infection and is holding on strong.  I went to my GP when it first started.  At that time, I had a bad case of laryngitis.  He says the laryngitis means that it is most likely viral and will just have to run its course.

My blood sugars are still good.  I'm using about 17 units of insulin/day.

We had a very nice trip to San Diego to see the kids and have our belated White Christmas.  The weather was unbelievably cold, but we had a good time visiting with the kids and dogs.   

Treating the BK virus as an outpatient

I received this during my hospital stay.

I was released from the hospital on Friday after my third treatment with the antiviral, Cidofovir.  I was tolerating it well and it was decided that I could continue with my treatment as an outpatient. That was fine by me.  So, I had the weekend "off", and started my treatments on Monday morning.  The day before Christmas.

The treatments were the same as in the hospital.  I take the Probenecid before I leave, the saline IV is started when I get there, followed by the Cidofovir, and then more saline IV.  I take the final two doses of Probenecid afterward.  I'm still getting a few side effects, but they aren't too severe.  I get a headache that is helped significantly by tylenol, and I feel tired.

My lab values remained quite stable throughout this.

                        Mon                Wed               Fri                  Mon             Wed          Fri
creatinine         1.62                 1.79              1.67                1.78              1.79           1.70
BUN                 51                    49                 45                   52                 52             45

My Potassium is down to 4.5 which is very good.  I'm hoping to not have to take the kaexolate for that soon.  My BGs are remaining good.

Unfortunately my viral titer numbers aren't so good.  When I was diagnosed with the BK virus, it was at 5.54.  I was drawn after two Cidofovir treatments and it wasn't much lower.  I was drawn again on Friday, and found out this Monday that that level is 5.03.  Not a significant difference.  Since it was New Year's Eve day, I had a hard time getting hold of a doctor that knew anything about this treatment.  I was feeling that I should not be having this treatment that is so stressful to my kidneys if it wasn't working.  But, I'm not the one who makes that call.  I finally got a doctor with the help of a very responsible and caring nurse who knew about my case.  My doctor was on vacation, and according to his office staff, completely unreachable.  It was a frustrating day.  The doctor that I spoke with said that I should continue with the treatment on Wednesday, and he would discuss it with my doctor in the meantime to decide what to do next.  He said that the viral titer still could drop off quickly.  He also said that the next treatment option would be to give me immunoglobulin treatment.  I'll have to google that to see what it entails. My nice nurse told me that its another IV treatment, but not as intensive as for the Cidofovir.

No New Year's dip in the river for me this year. With my picc line in, I'm not watertight.  Gary braved the cold though, and it was still a fun day.