Thursday, April 29, 2010

Results of my 21 month visit to Minneapolis

I had a wonderful time on my visit to the transplant center in Minneapolis.  It was nice to be there in good health this time.  On my last visit, I was in the middle of the CMV infection.  It made for a less complicated visit.

It was decided that I should stay on the Valcyte for a while longer to keep the CMV at bay.
My weight was 103.6 lbs. which is up from 101, but not by much.  I was hoping for more.  I'll have to keep working at it.  I do think their scale is a little on the low side, but it is my point of reference.

I had the opportunity to get together with one of the transplant patient that I communicate with once in awhile.  He is in the same protocol as me, so we have been through this experience together.  He had to go through the drug transition too, but was able to tolerate the Cellcept.  We had a very special time sharing our thoughts about all of this.  We are both so pleased with our results and so grateful to the people who make it possible.

I also got to meet a woman who I had been communicating with on the facebook page.  We happened to be having our appts the same day.  She is on the waiting list now.  They must have changed the protocol to include pre-transplant visits every 3 months.

The facebook page is really taking off.

The chemistry tests all were normal

For the CBC
WBC is 2.2  Absolute neutrophils is 1.7
Hemoglobin and hematocrit are back to norma levels.  The vitamins with iron helped.

Prograf was 4.5 which is within range.
Rapamune was 7.2 which is within range.

A1c is 6.2  which is up from 5.4 on the 18 mos. visit. (Normal is 4-6.)  I'm hoping that the increase is due to the stress of the CMV and the drug transition.  I have noticed that my blood sugars have increased lately.  

Before breakfast:                 blood sugar is 93          C-peptide is ?

After breakfast (90 min.)     blood sugar is 159        C-peptide is 3.0

The first picture was taken on my walk along the Mississippi.  I got rained on and had to run most of the way back and up a long flight of steps that offers a shortcut back to the hospital.  The second is from my garden.

Friday, April 2, 2010

Islet Cell Transplant Recipients is a new page on Facebook

I recently found another islet cell recipient online and he has created a facebook page where we can all share our experiences with this.  It was such a good idea!  Its so hard for us to find each other because of the constraints of HIPAA.  I appreciate the few recipients that I have been able to locate.  Its so nice to be able to share our joy of the experience in general and to compare some of our symptoms of the side effects of the medications we are all on.  I hope that it really takes off.

I am completely done with the immunosuppressive drug Cellcept.  I just had my levels for Rapamune and Prograf checked and both were within range.  Maybe I can be on coast for awhile with these drugs.

My mouth sores (caused by the Rapamune) are gone now and I haven't got any new ones.  They were no fun.

Cassie is in California now.  After a few going away parties and agonizing over which clothes to take, she is safely there.  We already miss her a lot.  She and Gary are hoping to get together soon.  That part, I like.

I have watched a few people who were hoping to get islet cell transplants have their hopes dashed.  The most recent one was due to a high PRA which is a test of the amount of antibodies you have in general.  The higher the PRA, the more likely you would be to reject the transplant.  Its something you have no control over, which makes it seem even more unfair.  My heart goes out to these people.  The only silver lining might be that with all of the advances that are occurring now in diabetes research, these people might get a newer treatment that does not require drugs or might have other benefits compared to the current technology.  I wish them the best.

Its Easter weekend, the weather is great, and I am off.  Gary and I are planning a scenic walk this afternoon.

The pictures are of some spring flowers, my pig at work that was decorated for Easter by my creative coworker and myself, and the last one is of pig islet cells from the Living Cell Technologies site.