day 63

Another call  from Minnesota, this time saying that my Epstein-Barr titer was even higher.  I had been suffering from a sore  throat and some mild cold-like symptoms since thursday, but did not feel like I had mono.  By this time my throat was feeling better and I felt fine otherwise.  But it was important to find out what is causing the high titer.  

So I spent most  of the day on tuesday trying to get in to see a doctor.  I had recently switched family doctors, and my new doctor wasn't comfortable seeing me without more information on my condition and she was very unavailable.  So I ended up going to my old family doctor who was available.  I had a mono test drawn and more lab work to be mailed back to Minneapolis to retest the EBV titer and measure my drug levels and wbc counts.  I  am still waiting for the results.

I am still insulin free and having good numbers.  I  talked to  Dr Hering about my slightly above target range post-meal numbers and he says they are not high enough to  worry about.

It is  so nice not to worry about lows.  I  actually slept the whole night through last night which is the first that  I  can remember in many years.  I still can't leave the house or go on a walk without food with me.  That is still way beyond my imagination.  

Day 61 insulin free

On tuesday, I removed my pump and used 4 units of Lantus.

On wednesday, I used 4 units of Lantus.

On thursday, I used 3 units of Lantus.

On friday, I used 2 units of Lantus.

All of these  days, I had glucose values in the desired  range of  80-120, with a few fastings in the 70s.

I decided that  one unit is not worth the injection and that I should just go for it.

So saturday was the day.  No injection at all.  It was also a good day because we were going away for the weekend with three other couples and I knew I would be more  active.  We had a great time on Put-in-Bay which is on an island on Lake Erie.  I had a few post meal numbers that were in the 120-140s, but all of my fastings were good.  It was so nice not to have  to worry about lows or having to eat exactly on schedule.  The weather was perfect and we spent time walking and riding bikes and generally feeling care free.  It  was a perfect setting for my big day.

Day 56

Last week, I got a call from the transplant coordinator asking me how I feel.  It seems that my Epstein-Barr titer (mono) was increased.  I feel fine, no symptoms at all, so the test will be redrawn the next week.   Also, my rapamune level was higher than it should be, so I will need to decrease to 4 pills a day.  

I finally got down to 5 units a day on friday and continued at 5 through the weekend.  I decided to  remove my pump on my next day off which is tuesday.  My glucose numbers have been good.

On tuesday,  I gave myself an injection of 4 units of Lantus, which is a long acting insulin.  I kept my pump on for about 2 more hours to coincide to when the Lantus should kick in.  It worked very well. My numbers were running a bit low, in the 70s, so I just ate more.

Everything was  going well, so I even went golfing in the afternoon.  I had not played all summer due to a frozen shoulder which was probably caused by my diabetes.  But I noticed lately that it seemed better, so I  thought I would give it a  try.  I had a good round and it felt great to  be on the course again.  My energy level is definitely increasing.

I worked on wednesday,  and had the same problem with the lower glucose values.  I had to eat 3 times before lunch.  So on thursday, I  tried 3 units and that seems to be going well too.

My most recent C-peptide value from Sept 2, was 1.75  fasting and  3.08 two hours after eating.

Day 49

I am back to work at my normal schedule now.  I feel that besides still not gaining much weight back, I am back to normal as far as my general health.  I am assuming that I must have lost mostly muscle and that is why its not coming back.  It wouldn't really bother me, except that I can't feel  that my recovery is complete until I am at least back to near my pre-transplant weight.

I seem to be stuck at 6 units of insulin/day.  It is frustrating, because there doesn't seem to be anything that I can do to get it lower.  I was at 11 units/day for about a week, so maybe this just happens.

Day 42 in Minneapolis

I travelled back to  Minneapolis today.  This time I flew through Philadelphia, which was way out of the way, but I am still not anxious to see the Chicago  airport again any time soon.

I went to the clinic for my 42 day checkup and had  the same tests.  I still havent got the results of my C-peptide, but my other lab tests look good.  My wbc count  is at the lowest acceptable so I will have a few draws here and send the specimen to U. o f M. to check the status and make sure it doesn't go any lower.  

I am at 6 units of insulin/day now and it was discussed whether I should start injecting Lantus which is a slow acting  insulin instead of using my pump.  I said that I still like the fact that  I can turn it off when I need to.  Like when I take a walk or have some other heavy exercise.  I suggested waiting until I am down to about 4 units and then trying the Lantus.  That will be a big event.  I  have been attached to this pump for 5 1/2 years now.  It already seems strange not to  have my continuous glucose monitor in one pocket.  Now I won't even need pockets anymore.  Sound like a good excuse to shop for new pocketless pants.

At this visit, I was able to meet another islet cell recipient.  I was told that she was here the same day as me, so I searched her out.  We had a great visit.  Islet cell recipients are a very small and geographically diverse group, so I feel  fortunate that our 2 visits coincided.  Not surprisingly, we had a lot in common, both in our experiences before the transplant and since.  She is also doing well, so our visit was very upbeat.  We both feel very fortunate to  have had the opportunity, and very much in awe of our doctors and the transplant staff.  She is not in the same protocol as me, so  we are on different immunosuppressant drugs.  It will be interesting to see which side effects we share.

One other thing I have not addressed before this, but is relevant to  anyone considering this experience, is how your employer views the absence.  All of my coworkers were and are very supportive, but  I was not sure if this would be seen as an illness or a vacation.  Being involved in a clinical  trial, I would think, is a gray area.  I decided not to formally address the issue, and have it discussed behind my back after it was a reality.  I was lucky in that the higher ups, who I really do not know that well, did decide to view this as a medical condition.  I was therefore able to exhaust my extended illness bank  instead of depleting all  of my vacation time.  I feel very grateful that this was what was decided for my case.