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

CBC
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.

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.

visiting Santa Barbara and a cold

Gary and I were able to travel to Santa Barbara to visit our son who lives there.  We absolutely love Santa Barbara.  It has the beach, mountains, and with all of the blooming plants in June, it feels like being in a magnificent botanical garden.  We had a wonderful afternoon of wine tasting in the back country.

It was nice to see our son, Gary and his girlfriend Heather.  Especially since they just had a horrible scare a few weeks ago when Heather, at age 24 suffered a stroke.  It looks like she will be fine, but it was an awful experience for all of us.  For now she is off of her anticoagulants and is just trying to take it easy and hope for no recurrence.  The longer she goes without having another stroke, the less likely she is to have one.   They are being very cautious.

The weather was good and we were able to enjoy many of our favorite activities.  We rode bikes, hiked in the mountains, walked the beach, and ate lots of good seafood.  It is SO much easier to travel west now.  We have skied in the Rockys many times and literally every time, I would have trouble with the time change.  Even knowing in advance and planning on eating an extra meal didn't help.  The time transition was very easy this time.  I had no trouble with blood sugars at all.  It makes such a difference in the whole trip.

The bad news is that I came down with a cold when we got back.  I think it might have come from getting germs while on the flight home.  This is the third time this has happened and it looks like I am going to have to take precautions the next time that I fly.

On top of that, I had a cortisone shot a few weeks ago.  I needed to have a ganglion cyst removed from my wrist.  The Dr tried to remove it by withdrawing it through a syringe and then adding the cortisone to prevent it from coming back.  I thought this would be better than scheduling surgery.  But, I was wrong.  The cortisone is affecting my blood sugars.  So now I am taking about 12 units/ day instead of my normal 8.  I don't like it.  I'm able to stay in pretty good control, but not as good as before.  The cold is hanging on and I'm not sure how long the cortisone will last.

My creatinine was high again last month at 1.0.  If it doesn't come down with the next draw, I might have to consult a nephrologist.  I have been drinking water like crazy.


Dolly is progressing nicely.  I am taking her on some public outings now.  We have been to the library and our little IGA grocery store.  Today, I am taking her to the bank.  She gets very excited at first, but with time and treats, she calms down and does very well.  She fared well with the girls while we were in California.  We are leaving tomorrow for our family reunion trip to Tennessee and she will be placed in foster care through the Assistance Dogs of America.  It will be her first separation from all of us and we hope she does ok with that.  I know that we will all miss her.

Labs and a Golden

I seem to be on some tangent with my electrolytes lately.  Its a little beyond my knowledge, but I'll post the numbers now and either the interpretation or the effects at a later date.

It began in January with a spike in my creatinine to 1.01 which led to a followup.
The followup showed that the creatinine had decreased back to 0.7 which is normal for me.

My creatinine increased to 1.0 again at my routine labs drawing in April.
The followup showed that it had decreased again to 0.8.
But, my sodium was low at 129.  normal is 134-147      
   In January, it was 133 when I was tested in Minnesota.
And my BUN was a little high at 22.  normal is 10-20

This led to additional testing last week.
Creatinine was steady at 0.8.
Sodium a little higher at 131.
BUN a little higher at 25.

The testing beyond this was all normal.
Liver enzymes, Albumin, TSH, ADH, Cortisol, Aldosterone.
These were checking on other organs and cell processes to probe the sodium problem

I haven't heard from my endo about these last results.  I am assuming that no news means he is not worried.  And the same from Minneapolis.  Renae said Dr. Bellin has seen these and is also not worried.
So, neither will I.  For now, it is something to keep an eye on.  Most importantly, I feel fine.  I might be a little hypochondriacal, but my ankles seemed a little swollen at times and I have seemed thirstier lately.  Maybe these will subside now that I know everything is ok.  I'm thinking they will.

During one of these draws, I had my C-peptide checked.  I was nervous about having this done because I assume that I am on the decrease.  It was down to 0.38.  In January, it was 0.66.  To be honest, I was a little relieved to see that it was still able to be detected.  The interesting part is that the decrease does not reflect my BGs or insulin use.  I have had very good numbers lately.  My last A1c was 6.6 which is a little higher.  That wasn't a surprise because of all the colds I have had in the last 3 months.  I think I will be lower at my next check in July.  And my insulin dose is back to 8 or 9 units/day which is where I was before all those colds.



Dolly has been progressing.  She has the commands that she needs to know at this stage down well.  She is still behind on the social issues.  Still overly excited by people and very submissive to dogs other than Callie.  She is growing like crazy and beginning to look more like a dog than a puppy.  She will have one more outing with her trainer next week and then she will get her vest and I can begin to take her to some public places.  In the meantime, it was suggested that I walk her around the outside of some buildings to get her used to shopping carts and strange faces.

D blog week - Awesome things

Awesome things - Friday 5/13:
Today's topic is to write about something awesome that you have done despite diabetes.  
Of course the thing that comes to my mind first is my transplant.  But I did that more to spite diabetes.  So I'll write more about my venturing into the online world.

I began looking at online discussions when I began using Symlin about 5 years ago.  It was scary to try something so new and it really helped finding people who blogged about their experiences with it.  It was good to know that the nausea would eventually go away.  The package insert and other information I had made me believe that it would dissipate in days, not months.


Next, when I started using my continuous glucose monitor, I was able to learn on line that you could use the sensors for longer than the 3 days that I was led to believe was their entire life.  And here I also learned the how to part of making them last which saved me hundreds of dollars.  At this point, I was paying for them myself.


Then once I learned these things, my skills increased to reading articles about diabetes in general.  And this is when I saw that picture of the pig(at the left on my blog) that eventually led to my transplant.


Because my online experience began with my discovering the value of reading about other peoples' experiences, I was compelled to share my islet cell transplant journey.  I get comments and messages from people that lead me to believe that it has helped some other people to learn more about the process. It has been very rewarding for me.  And by far, the best part has been the relationships that I have built with some of the people that I've met throughout the course of this.  I never gave much credit to online relationships before, but now have experienced some deep friendships with some of these individuals.  I have been lucky enough to meet a few of these people in person. You would think that it would be so strange to hug someone the first time you have ever laid eyes on them, but it feels very natural.  I have been involved with the pancreatic islet cell recipients page on Facebook and think it is an extremely valuable resource for anyone who is looking for more of an inside perspective on islet cell transplants.  For me, it is a great place to share this experience with others who truly can understand.  My only question is:  How did we ever live without this resource before?!