Friday, April 19, 2013

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.

Thursday, April 11, 2013

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.