Friday, July 30, 2010

7/21/10 Two year post islet cell transplant visit

Wednesday, 7/21/10 was the second anniversary of my islet cell transplant.  We drove to Minneapolis for my 2 year check up at the clinic.  We were also celebrating our 30th wedding anniversary, so we combined two very big milestones into a weeklong celebration.  We left on Saturday armed with kayaks, bikes, golf clubs, and blood sugar logs.  We came home on Wednesday tired, but happy.

We stayed the first two nights in Wisconsin and spent most of those first days doing our outdoor activities.  We are really enjoying our kayaks and looked like quite a site, with our blue and orange kayaks strapped to our roof.  We drove to Minn. on Monday and were invited to dinner by Camille, the woman who saw me through my JDRF Promise meeting with Rep. Latta.  We had a wonderful time and meal and enjoyed meeting some friends of theirs. Her husband was also a transplant recipient. We talked about my experience and even made a video of my talking about my experience and the Promise campaign.  I'll post it here.  It is really strange to see myself, but it is for a great cause.  I'm lucky to be in the position to be able to tell a story that is so compelling.  Mine is the video on the bottom of the page.

Tuesday was my visit to the clinic.  I'm still not sure why, but my blood sugar was 146 on awaking.  The highest fasting ever.  It went up to 185 an hour later and then back down to 123.  That has never happened before.  I feel more excited than nervous when I'm there.

The testing for this visit consisted of a mixed meal test and a glomerular filtration rate test to measure kidney function, as well as the routine tests.  Dr. Bellin came in to do my checkup and answer any questions.  I had very few this time.  I always enjoy spending time with Janet as she gets caught up with all of the documentation and gives me my cognitive testing (aka  the apple, table, penny test).  My two year gift to the staff this year was window clings in the same design as the t-shirts from last year.

Here are most of my lab results.  I'll post the rest when I get them.

Chemistry tests.  All normal except
Cholesterol 202   But HDL is 95 which makes that OK
AST  46  normal is 0-45

Creatinine 0.80 for comparison
The Glomerular Filtration Rate result was 76   Normal is >60

For the CBC
WBC is 2.4  Absolute neutrophils is 2.0
Hemoglobin 11.9. 

Prograf was ? which is within range.

Rapamune was ? 
I have decreased my dose from 6 to 5 pills/day.

CMV test was negative, so no more Valcyte.

A1c is 6.4  which is up from 6.2 on the 21 mos. visit. (Normal is 4-6.)  I am hoping it will come down again, but if it stays steady, that will be OK too.

Before breakfast:                 blood sugar is 123          C-peptide is 1.34

After breakfast (90 min.)      blood sugar is ?              C-peptide is 2.43

After my checkup, we kayaked on Lake Harriet which happens to be where my Mom grew up.  It was in a very pretty setting and there were many other people out enjoying the day sailing on the lake or running/walking around it.  We had a race which left me sore for the whole next day.

After our kayaking, we met another Minn.  islet cell transplant recipient, Dave, and his wife for dinner.  We had fun sharing our experiences and it was very interesting hearing stories from the spouses' perspectives.

Here is a summer picture of the Miss. River where I always take my walk.  The one on the right is an area outside the hospital where Gary and I spent a lot of time during the week of my transplant.

Thursday, July 15, 2010

Quite a week

I have had a roller coaster of a week.  This roller coaster is different from the ones that I used to experience with my blood sugars.  This was filled with life experiences.

I'll begin with the wedding of a friend's daughter on Saturday.  It was a happy experience to see two such nice families come together and was also a time of seeing old friends who I don't see enough of.  It was a wonderful evening.

On Monday, Gary and I celebrated our 30th wedding anniversary.  Its hard to believe its been that long and we still have so much fun together.  We had a nice dinner and then played 9 holes of golf.  We will continue our celebration on our trip to Minneapolis.

On Tuesday, we had to say goodbye to our beloved dog, Lucky.  She had been suffering with some severe arthritis pain and seizures for the last few years.  It was a very difficult decision, but we are glad that she is no longer in pain or living with all of the medication she needed just to make it through the day. We will miss her terribly.

On Wednesday, I asked my work group to celebrate the 2 year anniversary of my transplant with me.  We went out for dinner and drinks and had a great time.  They got me a card with some very heartwarming words that they had written.  I am so lucky to have them.  They helped me get through many tough days at work before my transplant and have been so pleased and excited for me with this whole experience.

Today, I attended a JDRF walk meeting for team captains.  I've started getting mine organized, but had some questions about it.  I was pleased to meet a few people who have done this before and who I can go to for help.  I also got to share my transplant story with the people at my table.  Its always a rewarding experience to be able to share this feeling of hope.

We leave for Minneapolis on Saturday morning.  We will spend two days in Wisconsin on the way doing some kayaking, bike riding, and maybe even some golfing.  We both enjoy all of these things and it makes it so special to be able to enjoy them with this nice healthy body.  No blood sugar issues of the seemingly distant past, or stomach issues of the more recent.  Just good exercise and hopefully lots of sunshine.

My clinic appt. is on Tuesday.  I'm very anxious to see how all of my testing comes out.  I've had some higher blood sugars since the last visit, so I'm prepared for a higher A1c.  But it will be very interesting to see how the C-peptides compare as well as the glucose tolerance testing and kidney function tests.  The best part always, is seeing the people at the clinic.  That will be the highlight of the trip.  They really are something special.

My blood sugars over the last few days have been the best that I have seen in awhile.   Life is Good.

This post warrants a pig picture.

Saturday, July 10, 2010

Transplant update - feeling better

I'm feeling better now, both physically and psychologically.  At the time of my last posting, I was suffering from the headache, starting to feel tired, and higher blood sugars.

The headache lasted most of 4 days.  When it finally receded, I was left with a sick feeling.  I was extremely tired, had an upset stomach and just general malaise.  My blood sugars were continuing to get higher and higher.  I was even more worried about CMV.  Maybe it just skipped the gradual onset and went right to the detectable symptoms.  Then, my blood sugars started getting better.  I had a 108 after breakfast instead of the 180-190s that I had been experiencing.  I probably should have double checked that one, but decided to just enjoy it.  Then I had a few other good numbers.  And then I finally began to feel better.  

In the 6 days since then, I have continued to get better.  The sick feeling gradually disappeared and my blood sugars are continuing to get better.  I still have a few higher ones than I like, but mostly they are better.  I am definitely on a downward trend.  It will be interesting to see how low I go.  

Janet, the research coordinator, sent me a nice note when I let her know that I was feeling better.  She said that this happens to other patients too.  You can be sick or stressed and not even realize it.  My normal state will probably continue to have its own fluctuations.  Her words were very reassuring, as usual.

So, needless to say, I am very relieved.  I know that I could start seeing higher numbers again at any time, but for now I will just enjoy the present circumstances.  I am feeling just great again and looking forward to our two upcoming vacations.  They both are centered around outdoor activities and I can't wait to experience them in the best health that I have been enjoying for many years.

Saturday, July 3, 2010

Transplant update

I'm still worrying over my higher blood sugars.  It seems like my baseline has taken a shift upward.  I still go below 100 sometimes before meals, but not as often.  My postpradials have been higher too.  I have had 4 over 200 now.

I still come back down, which means that my islet cells are still functioning.  They are just now working as well as they once did.  The upward trend came after the switch from Cellcept to Rapamune.  That probably has something to do with it.  It could be several factors though.  I was taken off of the Cellcept because of the colonitis.  Maybe I wasn't getting all of the nutrients from what I was eating.  I think I was eating as much as I used to, but was still experiencing a steady loss of weight.  Now I probably am absorbing all of the calories that I eat.

I still feel fine, which is the good part.  I have energy and just feel healthy.  So that's nice, but I can't blame the higher blood sugars on any type of infection.  I did have a headache yesterday, which might account for the really bad numbers of yesterday.  I was 146 before supper, 188 at bedtime and 143 this morning.  That is the worst streak ever.  It has led me to break down and call Janet.  She is having Dr. Bellin call to discuss it with me.  I'm anxious to see what she has to say.

Two days have passed, and I'm still not feeling well.  I still have the headache and now nausea and fatigue.  I must have caught something.  And its now the 4th of July weekend, so I'm not happy about being laid up.

Yesterday when I began to feel worse, I called Janet again to let her know.  Dr. Bellin called to see how I was doing.  We discussed my symptoms and don't think its the CMV again.  The CMV had a gradual onset and this is more sudden.  I felt fine 4 days ago.  I'm hoping that when the headache ends, the other symptoms will follow, but if I don't feel better soon, I'll have to go to a doctor.

I asked what she thought about my recent higher blood sugars.  She says that she and Dr. Hering discussed that and decided that it would be too risky at this point to change immunosuppressants again.  The concern is that it might cause a rejection.  There is another drug similar to the Cellcept that I was on before.  Its called Myfortic and has a coating to help prevent the stomach issues that caused me to have to give up on the Cellcept.  That is the backup plan, but we are hoping that the Rapamune will still do the job.  Another strategy that Dr. Bellin might consider is to lower my dose of Prograff.  She says that sometimes it can have a detrimental effect on the islet cells.

I have my 2 year checkup in Minneapolis on the 20th.  The timing couldn't be better.  Hopefully, my numbers will be better by then, but if not, the testing should tell more precisely what the problem might be.  And its always good for the moral support.

Well, bad new posts aren't nearly as much fun to write, but are an important part of the whole story.  I'll end with some happier flower pictures from my garden.  It has been a good summer for flowers.  Plenty of both rain and sun.  And here's one of my in my new kayak.  We had fun trying them out last weekend.