Thursday, January 27, 2011

The scare is over

I saw my endo on Monday and learned that my creatinine level was back down to 0.7.  Since the transplant, I had been running in the 0.6-0.8 range, so I am back to normal.  I am SO relieved.  This is the worst scare that I have had yet.  The CMV bouts were worrisome, especially the second time.  But, I knew it could be controlled with Valcyte, an antiviral drug.  This high creatinine combined with my higher blood pressure had me worried about my kidneys.  My worst fear was that I might have to decide between my new islets and my kidneys.  And of course, there is no decision there.

With some hindsight, I think this might have occurred while my Prograf level was increased.  At my monthly check on my drug levels, the Prograf level came out really low.  My dosage was increased in response to this and my level was rechecked.  It was above range, so my dosage was decreased almost to where it was before.  Then, about a week later, I noticed that I was really tired and felt almost sick.  I was also having some leg cramps at night.  Both of those got better within about 3 weeks and I forgot about them.  While I was fretting over the creatinine and BP numbers, I was googling kidney function.  I found both the fatigue and the leg cramps as symptoms of kidney stress.  So, I'm guessing that my high creatinine was due to the temporary increase in Prograf and it was caught on its way back down to normal at my Minneapolis visit.

So, with the kidney scare over, just the high blood pressure had to be addressed.  Since I can't lose weight or increase exercise more, the answer is in the form of one more tiny little pill.  I'm now taking Lisinopril to keep my BP under control.  My BP was about 150/80 at my appt, so no argument from me.  I had been trying to lower my salt intake and drink more water, but that didn't seem to help.  I asked if it was most likely due to the immunosuppresive drugs and was therefore a losing battle, and my Dr. said yes.  It shows how perspective can change.  At my last visit, when the increased BP was discovered, I was nowhere near ready to give up and add another prescription to my arsenal.  Now, it seems like a relief to have an easy fix to what I believed to be a complex and scary situation.

The good news also made for another cheery visit to my endo.  We really seem to click and I enjoy my visits.  I was dreading a sad conversation and ended up on a very happy note.  My A1c was at 6.2.  It was 7.1 at my last visit which was when I began the insulin.  We were both pleased by that.

It still amazes me how effective a small dose of insulin can be.  I am taking 6 units of Lantus/day and 1 unit of Novolog before breakfast and lunch.  I do my exercising after dinner these days and that allows me to skip the Novolog dose before dinner.  I have been experimenting with trying to exercise between lunch and dinner.  But when I skip the Novolog there, I end up with a higher number.  Maybe when the weather changes and I can be out more, I'll try again.

This is the only flower I have at the moment.  Its actually last year's Poinsettia.  The white background is what it looks like out my window today.  I'm ready to see some more GREEN.

Thursday, January 20, 2011

Islet cell transplant at 2 1/2 years

I have been invited to be a featured blogger by the diabetes social network, the Diabetes Herald.  I'm really honored to do this.  The site is a useful source to see what people are writing about and offers a way to catalog and compare different issues.  I especially like the way it allows the reader to view blogs in their entirety.  I only wish I had more time to read them all.

I just returned from my two and a half year post-islet cell transplant visit at the University of Minnesota (SDI).   I was also able to spend part of my visit with some friends that I have met who live there.

The flight was uneventful which is a good thing traveling from Detroit to Minneapolis, via Chicago.  I was only about an hour later than anticipated.  I was met at the airport by my friend Camille and her husband Geoff.  We all went to a chinese restaurant near the University for dinner.  Deb, who is Camille's friend and fellow JDRF supporter was there and we were joined by Scott Johnson who is a well know diabetes blogger.  It's always such an uplifting and dynamic feeling to be able to talk about diabetes with people who are so passionate about the topic.  We spent a wonderful evening sharing ideas about our various experiences with diabetes.  Scott and I are both Type 1s, and the others were parents of Type 1 children.  The more that I'm around parents of diabetic children, the more I appreciate their courage and strength.  It would be so difficult to have to treat diabetes without the (privilege) of feeling any symptoms.  Numbers are secondary prompts which is all that they really have to work with.  We discussed how diabetes can be very frustrating and there just aren't any hard fast rules to go by.  We can see how the JDRF artificial would be helpful, but are skeptical about relying on its accuracy to deliver insulin safely.  My situation is so different.  My islet cells only make the insulin if stimulated by glucose, and never over produce and cause a low blood sugar episode.  I rarely have the opportunity to be in the presence of diabetics or parents of diabetics and it always serves to remind me how incredibly lucky I am.  We were also excited by the research involving stem cells and the regeneration of islet cells.  Each of us feel very compelled to share our messages to the diabetic community and to raise awareness of hope and the need for funding to increase the research potential.

We talked, commiserated, offered hope and just plain had fun until past our bedtimes (at least mine) and then decided to get together again in July when I will return for my 3 year checkup.  It will be my last visit there for the study.  Scott is a fellow kayaker and we are hoping to get an excursion into the plans as well.

I was up early the next morning and took a shuttle over to the clinic.  I was pleasantly surprised to find that Janet, the clinical coordinator was also to be my nurse for the day.  Then I realized that she was performing the physical part of the visit instead of only the paperwork part because of funding difficulties.  That was a sad thought.  But it was a plus for me to get to spend the extra time with her.  She did say that some additional funding had just come through last week.

I found that as suspected, I had gained about 3 lbs.  My blood pressure was high for me at about 150/85.   I used to be much lower at about 110/60, so this was a worry.
I had my blood drawn for the glucose, C-pepide and A1c to check on the islet's functioning.
Also a CBC, lipid pannel and liver and kidney chemistries to check on my overall health.
And there were several tubes drawn to monitor various antibody levels as part of a separate study which attempts to isolate which antibodies are trying to get at my islets.  When this was done, I was given a measured amount of Boost which contained a controlled amount of carbs and other nutrients.  This is called a mixed meal test.

Dr. Bellin came in and did the physical part of my neurological testing.  That consists of testing of reflexes, eye movement, walking a straight line, and sensitivity of my extremities.   I passed all of those.  We discussed my insulin use somewhat and then I took the opportunity to ask about the pig islets.  She explained that they are still testing the pig islets on monkeys trying to get the best combination and strength of the immunosuppressants.  I asked if I would be able to get some despite having had one transplant.  She was skeptical, but didn't say no.  We both agree that it would be, by far, the second choice to having my present islets last forever.

Next, Janet did the verbal part of my neuro testing which was remembering words, counting backwards from 100 by 7s, drawing shapes and writing a sentence.  I have done this so many times now that I can have some fun with it.

Then I was drawn again at 90 minutes after drinking the Boost.  This was to check glucose and C-peptide.

When this was done, I was allowed to eat breakfast and then went for my traditional walk along the Mississippi River.  It was cold, but enjoyable.  The sky was blue and the sun was shining on all that snow.

When I got back to my room,  Janet told me that some of my labs were back and that my creatine was elevated.  This in combination with the higher blood pressure is a worry that my kidneys are being stressed, most likely from the immunosuppressants.  So, I was advised to see my doctor at home and have an evaluation on what to do about this.  Dr. Bellin recommended a drug, Lysinopril, to try that should help both my blood pressure and my kidney function.

When my immunosuppressant levels came back, the Prograf was slightly elevated, so it was decreased from 10mg/day to 9mg.  I will be redrawn on Monday and hope that this will help my kidney function. I'm also trying to be very good about drinking more water.

Here are my lab results from this visit.
Chemistry tests.  All normal except:
Cholesterol 223   But HDL is 125 which makes that OK

Creatinine 1.01  It has been running at 0.6-0.8 so this increase is cause for concern.
The Glomerular Filtration Rate result was 58   Normal is >60

For the CBC
WBC is 3.3  Absolute neutrophils is 2.1
Hemoglobin is 12.9. 

Prograf was slightly over the target range, so I have decreased my dose from 10mg/day to 9mg.

Rapamune was within range.  I take 7 pills/day now.

A1c is 6.4  which is exactly what it was at my 2 year checkup in July.  This was before I started back on insulin.  In the meantime it had increased to 7.1 which is the point at which I began the insulin.  

Before breakfast:                 blood sugar is  98         C-peptide is 0.66

After breakfast (90 min.)      blood sugar is 220        C-peptide is 1.39

This is lower than at my 2 year visit.  But it is the same as it was at my last test after beginning the insulin.  I did take my Lantus dose the day before, but not the morning dose of Novolog since I was fasting.

Saturday, January 1, 2011

2010 My islet year in review

Looking back, this was a very eventful year.

It began with my realizing that my fatigue might just be more than the typical holiday over doing it.  I discovered that I had CMV (again).  I began taking the antiviral drug Valcyte again to treat it.  It wasn't as difficult as the first time I had it either in intensity or duration.

This led to looking into (literally) my colon to see if the CMV was causing some of my abdominal discomfort.  I received a very interesting photo that showed what an inflamed colon looks like.  I still have it.  But, it was determined that it was not the CMV, but the results of one of the immunosuppressants I was taking.

This led to me giving up on the Cellcept and going back on Rapamune.  I was on this before when I was still taking Raptiva.  It caused me to feel much better other than an occasional mouth sore.

I discovered how well Debacterol works on mouth sores.

I was able to tell my transplant story on several occasions.  My story was featured in a two part article in the JDRF of Northwest Ohio newsletters in January and February.  Then in May, my story was again told in the newsletter published by the Diabetes Research and Wellness Foundation.

I participated in a Promise Meeting with our local congressman, Bob Latta to convince him to cosign for the Special Diabetes Program.  He did and it passed in November.

The Islet Transplant Recipients Facebook page was created by Matt Jay.

I participated in two JDRF walks.  I was a team captain for the first walk.  We raised over $900.  It was a fun and rewarding experience.  I was touched by the turnout and the comments that I received.  I was a helper instead of walking at the second event.  I helped to recruit people to become JDRF advocates.

I celebrated the 2nd anniversaries of both my transplant and of my being off of insulin.

I started using insulin again.  This was very disappointing for awhile.  In hindsight, it was also somewhat of a relief.  I lived through my worst fear and have survived it.  It had been very difficult to slowly watch my BGs increasing and not having the capability to stop them.  I was cutting carbs and exercising all that I could, but it just wasn't enough.  I was feeling a little bit like I was failing again just like all of those years before my transplant when I just couldn't get it right.  So now, with an insulin crutch, I can at least be successful again in controlling my BGs.  This seems to be very important to me.  And as before, the needles and bother of the insulin are not the least bit of a problem or stress.  I'm just glad that they work.

I was on TV.  With Dr. Hering.  It still feels like a dream that I had the opportunity to do that.

The Diabetes Transplant Summit was an experience of a lifetime.  The people I met.  The message that we shared.  I know I will never forget any of it and will enjoy thinking back about it forever.

2010 was a fantastic year for me.  I am so very lucky.

To begin the new year, I did a polar bear plunge into the Maumee River.  It was really, really cold.  I was double dared.