Thursday, July 21, 2011

Islet cell transplant - 3 years 7/21/11

Today is the third anniversary of my islet cell transplant.  We returned home last night from my visit to Minneapolis for my yearly testing.  We had a fantastic trip.  Both the clinic visit and the getting together with the people that I have met during this amazing event in my life were very rewarding and memorable.  It was my last clinic visit which was a very sad thought.  I have really enjoyed each and every trip that I have made up there.  There were 16 visits all together.  The initial screening tests, the signing of the consent form, 12 post transplant clinic visits, and 2 visits for the hypoglycemic unawareness study.  The traveling could be very frustrating, but the visits more than made up for it.
Looking back, these trips were in the con side of doing this.  Hindsight is 20/20.

We spread the trip into a mini-vacation as we did last year.  This year, we stayed the first two nights in Faribault, Minn.  We rode bikes and kayaked here for most of Sunday and Monday morning.  It was a nice town.  The weather was extremely hot.  Walking and golfing were both out of the question.

On Monday, we met my now retired nurse coordinator Janet for lunch.  We were originally planning on a bike ride, but the weather forecast made us change our plans.  It was supposed to feel like 101 by 11am.  We decided on lunch instead.  We had lunch with her and her husband and son and then spent the afternoon getting caught up and taking a hot walk through a beautiful park.  The visit meant a lot to me.  It was so nice getting to know her without a lab coat on and meeting her family.

Monday night, we met another group for dinner.  We met Camille and Deb who are my JDRF government relations friends, Deb's husband Randy, and Scott Johnson a fellow blogger.  We all shared what we had been doing and how all of these things intersect.  I must have been talking too much, because I looked down and noticed that everyone was through eating and I hadn't even begun.  The meal was good, but almost cold.  Camille has convinced me to try to set a Promise meeting with John Boehner.  I have been working on setting that up today.  Scott recommended some good places to kayak and we all hoped to get together again.  With friends like all of these, I won't need my arm twisted too hard to return to my special place up north.

My visit to the clinic was Tuesday morning.  I had lots of blood drawn for labs and also a 24 hr urine test.  Renae is my nurse coordinator now and I enjoyed spending the day with her.  She had taken care of me during my transplant, so I already knew her well.

Dr. Bellin came in for my examination and for me to do my usual grilling of her with my questions. She is always very cheerful but serious and answers my questions thoroughly and patiently.  My questions this time were mostly about my pending appt with a nephrologist and my worries about the immunosuppression.  She didn't seem worried about either situation and I haven't thought much about them since.  My labs will be a good measure of my kidney function and I don't have any symptoms from the immunosuppressants right now.

I had decided to give Dr. Hering a pig from my collection for his own collection as a thank you gift.  Renae put it in his office so that he would see it when he walked in.  It must have inspired him to come down for a visit, so I was able to see him.  This of course, was the icing on the cake.  We talked about how I was doing and about the pig islet cell research.  It was a special moment and a superb  ending for this last visit.

After everything was done, Gary and I did our last traditional walk along the Mississippi River.  It was extremely hot, but it would not have felt right skip this portion of the visit.  Despite the heat, the river was beautiful, the trees a brilliant green and the sky was blue.

We went out for dinner in St. Paul and were met there by Mary, my islet cell transplant BFF.  We had spent some good times together at the Transplant Summit in November.  It was so nice to see her again.  She has just celebrated her 4th anniversary and is still inulin free.  We enjoyed a nice evening reminiscing about our common experiences and catching up on our family news.

The trip home was uneventful except for the amazing heat.  It has followed us home because it was 100 degrees today.  We spent the afternoon floating in friend's pond and then went out to have a celebration dinner with the girls.  It has been a good anniversary day.

Here are my lab results.  The kidney function testing is having some follow-up.

Chemistry tests.  All normal except
Cholesterol 201   But HDL is 83 which makes that OK

Sodium  131  normal is 133-144
AST  50  normal is 0-45

Urine testing
Microalbumin  29   normal is 0-20
Urine Total Protein  0.35  normal is 0-0.2

Creatinine 0.87 for comparison with previous readings.  This has been fluctuating.
The Glomerular Filtration Rate result was 68   Normal is >60

WBC is 3.8  Absolute neutrophils is 2.8
Hemoglobin 10.8  normal is 11.7-15.7 

Prograf was 5.5
Rapamune was ?
A1c is 6.0  which is down from 6.6 in April (Normal is 4-6.)
Before breakfast:                 blood sugar is 119          C-peptide is 0.94
After breakfast (90 min.)      blood sugar is 241          C-peptide is 2.20

My only regret about this trip is that I forgot to take pictures of all of these events.  I was just enjoying myself so much that my camera never occurred to me.  Here are a few from our river walk and kayak trip.

Friday, July 15, 2011

Tennessee and laryngitis

Ely Clan
We had our annual family reunion in Tennessee this year.  We were in the mountains which was a change from our usual beach locations.  We were able to do some hiking, kayaking and swimming in the beautiful weather as well as having a lot of fun and games in the evenings.  As usual, a good time was had by all.  We are so lucky in that way.  Its hard to get a group this size together and not have to worry about any stress or conflicts.  Except when Jacob and I kill at euchre! :)

Healthwise, it was a challenge for me.  I had a sore throat with a slight cough when we left.  It seemed to be getting better and I had cultured it twice at work and found no bacterial pathogens.  On our second night there, I woke with a cough that was burning in my chest.  The next morning, I went to an urgent care site.  I was diagnosed with bronchitis and given a prescription for a Z-pac.  This seemed to help and I never had the burning sensation again.  I hoped to get back to normal soon.  I got better, but never really all the way.  I was still coughing and a little tired.  I didn't miss too many activities except for the later night ones.

One night we went out for dinner to a barbecue rib place.  Inside there was a showcase and more pig memorabilia than I have ever seen (except at home).  It was like a museum and I just loved it!

We came home on Friday.  We had 7 people and for awhile, a dog in our car.  It was actually quite fun.  I worked on Saturday and Sunday.  On Sunday, I woke up with no voice at all.  Another throat culture showed only normal flora.  I went over 7 days with no voice.  I was the butt of many jokes.  It is finally coming back, but slowly.  Even now I am scratchy and sometimes just run out voice.  But, I can communicate, pay back, and kind of make phone calls.  I'm back to gargling with anything google might suggest.  I have tried hydrogen peroxide, mouthwash, vinegar, and salt water.  No success.  I feel fine otherwise which makes resting difficult if not impossible.  Its summer and there are just too many options.  My BGs are affected only a little.  I am taking 7 units of Lantus instead of my normal 6 units.

On another front, Dr. Bellin has decided that I should see a Nephrologist.  My creatinine and bun levels have been fluctuating too much.  I have been noticing some ankle swelling and that my urinary habits are different lately.  So, I know that its a wise thing to check it more closely.  I have an appointment at the end of next month.

In the meantime, I am anticipating my 3 YEAR anniversary of my transplant and my trip to Minnesota for my final clinic visit.  I am hoping to see many of the people that I have met during these last wonderful 3 years of this experience.

Dolly has been having some fear issues and we are taking her this evening to spend some time (maybe a month) with the ADAI trainers.  We will miss her but hope that they can get her over this problem.