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.