First Post-transplant cold

It turns out that I did not have to worry about all of those diseased people on the airplanes or of not having my H1N1 vaccine in time after all.  I got a cold from the very person who I was risking the flights to go see.  I got a cold from my beloved son.  When we first got there, he was sneezing and tired.  Before we left, Heather was sneezing.  A few days after we got home, both Gary and I began sneezing.  I would say that is reliable enough data to point out the source.  It was actually very interesting to be able to have such a direct comparison between Gary and my immune systems.  His symptoms hit about one day before mine and peaked earlier.  Mine dragged on for about 2-3 days past his.  So all in all, I was pleased with my own immune response.  It was just a little worse than Gary's, in time and the same in severity of the illness.  I was worried that I might run a fever and then have to worry about H1N1, but that never happened and I avoided anything with a fever suppressor that might mask the presence of one.

I went to work, but babied myself as much as possible.  It is almost like being pregnant, worrying about taking care of the islet cells.  I would hate to lose them because of an illness.

My blood sugars shifted upward during the cold, but are coming back down now.

I was able to get my H1N1 shot yesterday, so I am all set with that.

My coworkers and I were the H1N1 virus for our halloween.  We work in the microbiology Department.  We won for best group costumes.  I can't believe that I  finally got them to dress as pigs!

Santa Barbara

We just returned from a fantastic trip to Santa Barbara, CA where we visited our son, Gary.  It was one of those trips where everything just goes right.  The weather was perfect.  The scenery was amazing.  We can see why he likes it so much there.  We enjoyed mostly outdoor activities.  We biked along the Pacific, hiked in the mountains, toured the Botanical Gardens, and found some historical sites.  Gary took us to see one of the telescopes that his company owns and which he helps to maintain the network. It was way in the mountains in a national forest and the drive there and back was spectacular.  We ate most of our meals at open air restaurants and just had a wonderful time with Gary and Heather.  And of course we got to see his dog Maddux, the genius.

It was so nice not to have to worry about how the time change, especially with all of our added vigorous activities would affect my blood sugars and general state of well being.  I rarely even thought about it other than to notice that it was not an issue.  In previous visits across three time zones, it was always a problem, no matter how much. I anticipated and prepared for it.  My stomach was on its best behavior for this trip too.

Now I am getting ready to leave  for my one year and three month visit to Minneapolis.  I am really looking forward to it.  I leave tomorrow afternoon.  It has been a crazy week of flying, but so much fun.  I still have not managed to get my H1N1 vaccine and it makes me nervous to fly with so many people.

I have my mask that I can wear if I get near to someone who looks sick, but so far I haven't felt that I needed it.

New book by Edmonton Protocol patient

I have had the good fortune of finding one of the original Edmonton Protocol islet cell recipients.  There was a story about her in Diabetes Health, one of the online diabetes information magazines that I read.  She has written and published a book about her experience.  I purchased the online version last night and have read some and scanned most of it.  It is really good.  I am really enjoying the parallels between our two experiences.

The author is Donna Marcelissen. The book is titled One Step Up From a Lab Rat, and can be found here.  I e-mailed her and she answered some of my questions and hopefully we have started a correspondence.  Her experience has been much more intense than mine on several levels.  Her diabetes and its complications were much more advanced than mine.  Her time and financial requirements were more than mine.  And most importantly, she didn't have people who had already experienced this before her that she could talk to or even read about.  I still have only found a few, but that is still a big difference than none at all. I really went into this with very few reservations.  She is a true pioneer and there will be so many of us who will owe her a great debt.

Gary and I are planning on visiting our son, Gary in California this weekend.  I am really looking  forward to it.  I have been feeling good lately, and hope my stomach will behave.

Pig islet cells transplanted in man in New Zealand

I found this article yesterday. This is the first pig islet cell transplant in awhile. I hope that I can find a way to follow the progress of the patients.

Wednesday, 7 October, 2009 - 17:31

Wellington, Oct 7 NZPA - A New Zealand biotech company has implanted cells from a pig pancreas into a long-term diabetes patient at Middlemore Hospital in South Auckland.

The pig cells were expected to help the man, 47, manufacture his own insulin to combat type-1 diabetes.

They were inserted in his abdomen after Living Cell Technologies (LCT) received special approval for the xenotransplant.

The patient, who has suffered from diabetes for 20 years, was the first of eight approved for clinical trials of the LCT product.

The pig cells are covered with a seaweed gel to avoid them triggering the immune system in humans and being rejected.

The first four patients in the trial are being given the equivalent of 10,000 islet cells per kg of body weight and the next four patients will get a higher dose of 15,000 cells/kg.

It is not the first such transplant in Auckland -- LCT's medical director, Professor Bob Elliott, who carried out the original research, implanted pig cells into people there in 1996 and 1997.

His work was interrupted by Government concerns over the potential for pig viruses to be spread between humans.

NZ medical authorities blocked the trials being re-started in Rarotonga, and LCT was later listed on the Australian stock exchange to fund trials on monkeys in Singapore.

LCT has said it could avoid risk by using tissues from disease-free piglets in a breeding line said to have been isolated from other pigs for over 150 years on the Auckland Islands.

According to Dr Elliott, a group of Russians injected with New Zealand pig cells in 2007 showed reductions in daily insulin injections, ranging from 23 percent to 100 percent, and had good control of blood glucose levels in four out of five patients.

The Auckland trial received ministerial approval in June on the condition that it was limited to patients with "brittle diabetes", a relatively rare type-1 form of the disease which can cause extreme swings in blood sugar levels.

This week's patient has had frequent episodes of high blood glucose and unacceptable swings, including low blood glucose levels.

He was monitored for eight weeks by principal investigator, Dr John Baker, a diabetes specialist based at Middlemore Hospital, before the implant, and will be followed up intensively for a year.

An independent data safety and monitoring board will assess progress and provide a report in six months.

LCT chief executive Paul Tan said he believed the Auckland trial might deliver better results than the Moscow trial, because it would be using higher doses of islet cells.

Very exciting. This is what the Spring Point Project and Dr. Hering are working toward in Minneapolis. Information on this is on the pig picture at the side. The New Zealand study also included the gel surrounding the islets so that immunosuppressants are not needed.

I am continuing to do well. My blood sugars are running fine. My drug levels are stable. My stomach is not perfect, but tolerable. I'm still working on gaining some weight back.

Celebrating One Year of no insulin

I just celebrated a year of not having to use insulin on Saturday, Sept. 19, and decided to share my joy with everyone. I sent this letter to anyone whose e-mail address I have and am working on getting the addresses of many others that I don't.

Gary and I actually spent the day camping with some of the people that I spent my first insulin free day with at Put-in-Bay last summer. Except for our mouse eaten camper and the skunk that sprayed our dog, it was a perfect weekend.

Dear Family and Friends,

Yesterday was my one year anniversary of being insulin free and I am feeling nostalgic about it and thought I would send a letter to share my good feelings.

It has been a fantastic year highlighted with so many new experiences.

I never thought I would be able to go on a walk or a bike ride and not take something sweet to eat with me. I do that now without even thinking about it.

I can go to a restaurant with friends and not have to eat before or worry if there is a long wait for the meal.

I can take a break at work when I reach a convenient stopping place instead of whenever my body needs to be refueled.

I can get through an entire night without having to check my blood sugar and/or eat several times.

These were the first things that crossed my mind, but I think I will change course and list all of the reasons that I am in such a good place right now:

The staff at the Schulze Diabetes Institute who work so hard to enable the reality of the clinical trial that I am participating in: Dr. Hering, who is the force behind the program and the reason that I chose U. of Minnesota as the best to have the transplant. Dr. Bellin, who monitors my progress and I have learned that I can trust her opinions completely. Janet who is my main contact person and does so with a very comfortable balance of compassion and professionalism.

My family, both immediate and extended, have been so supportive and excited throughout this amazing journey. My mom actually drove through a blizzard with me to get to my initial screening tests.

My friends who are so happy for me and understand my excitement and don’t (seem to) get tired of hearing me talk about it.

My coworkers who sometimes had to finish my work for me when I had to stop what I was doing because of a low blood sugar, but expressed only concern for me.

Anyone who is an organ donor.

And last and most, my husband Gary for being there completely. I could not have done this without his support. It helps so much that he thinks this is as cool as I do.

One very enjoyable aspect of this experience has been the sharing of it. I have been keeping a blog journal of my experience and have made some contacts with others who are considering the idea of a transplant and some who have had the transplant before me. It is such and important and wonderful thing that I feel so fortunate to be a part of. I thank all of you for allowing me to share it with you and I hope that you will share it with anyone who will listen. Hopefully, this study and the many that are being performed around the globe will soon lead to a cure.

Sincerely,

Kathy

Update and diet issues

I seem to be at a plateau in many variables at the moment.

My average blood sugar according to my meter is 105.

My stomach is ok.  Not the best or the worst.  I am taking one immodium a day.  I am trying to cut back on that when I can because I am suspecting it is the cause of my evening upset stomach.  

My drug levels are stable.  I can start having them tested monthly instead of twice a month.

My energy level seems good.  I have been playing some golf and have been pleasantly surprised with my game (except for chipping).  Yesterday, Gary and I took a long bike ride and I wasn't any more tired than I should be.

The next variable I have to work on is to gain some weight.  I  am about 12 pounds less than pre-transplant.  I  lost about 8-10 with the transplant and about 5 from the CMV/diarrhea.  I gained some of it back over the winter, but am still too low.  My gauge for deciding that I   must be too low is that people keep telling me how thin I look and not in a good way.  I just assumed that  I would gain it back with time, but it looks like it is going  to take some effort.  It is very strange to be adding food to my diet after so many years of trying to eat smaller amounts to keep my blood sugar down.  But I have been trying to increase portions and add an item here and there.  I really have not changed from my pre-transplant diet at  all. I had assumed that I would gain weight on this diet because I am no longer excreting sugar(and calories) in my urine.  I have to admit it is a weird problem to have and I don't get much sympathy for it.  I also have to wonder if it is possible to gain weight at my age and gender and have it not be all fat.  I get  some exercise every day, mostly walking, but I am not into weight training at all.

More Results from One Year Checkup

 Results of Glucose and Insulin Tolerance Testing from one year check-up

This chart is the results of some of the testing that was performed at my one year check up.  If you click on it, it expands and is easier to read.  For this test, I was hooked up to one IV for drawing my blood at all of these intervals, and another IV to deliver the glucose and insulin boluses.  This shows how the C-peptide rises when the glucose rises and returns to baseline.  It also shows how the insulin level rises with the glucose and also returns to normal.  This chart looks a lot like the chart from my 75 day visit.  The C-peptides for this test were a little higher.  At 75 days, the highest was 2.1.

Gary is back from his trip to Scotland.  His mom has always wanted to go to Scotland and see where her family had lived, so she and Gary and some friends went this summer.  They had a wonderful time.  I hardly slept while he was away.  I am still trying to decide whether it was due to his absence or the Valcyte.