Thursday, December 17, 2009
He had some interesting things to say at this visit and I want to write them here and will probably be referring back to see what I was thinking at this point in time.
He is worried about my fasting blood sugars being higher than at the last visit. Three months ago, they were mostly below 100. Now they are between 110 and 115. This correlates with an increase in my A1c which was 5.3 and is now 5.6. I have been somewhat worried about this too, but am hoping that it is due to other factors like my cold and the season. I always am at my best in the summer. I think it is the added activity that the summer facilitates. Only time will tell what is happening. I have worried about this before, only to see a return to normal.
He asked if it would be possible to begin insulin or oral glucose lowering medicines early in hopes of keeping the islet cells stronger for longer. This is something that I will ask about at my next appointment in Minneapolis next month.
He commented that he is glad he received me as a patient after I had already had the transplant, so that he does not have to deal with the possible guilt if this does not go well. I can understand this. (My former endocrinologist was not all for my doing this, and it was a bit uncomfortable for both of us that I did it anyway.) When he said this, I said that no matter how this ends, I will never doubt my decision to have tried this option. He smiled and wrote what I said in his notes. I asked if this was to read back to me later? He said no, he just likes to write that kind of thing down. I gave him permission to throw it in my face if needed. I know that the decline will be difficult.
He was just a little concerned about my weight. I was exactly the same as my previous appt. at 105 lbs. He ordered some thyroid function tests which have come back normal.
My Cellcept level is back up. I have been tolerating the increase, but would not mind going back to the previous dose. I am due to have a recheck next week for both drug levels.
Thursday, December 3, 2009
Things are mostly stable at this point. I just had my monthly labs done and there were just a few minor issues.
My Cellcept level was low, so I have increased my morning dose. Hopefully, my stomach won't suffer too much for it. Ironically, we are planning a weekend getaway to Florida with some friends so I am hoping I will not be having my old stomach problems. The last time my level was increased was just before we left for St. Thomas, so I have a right to be paranoid.
My blood sugars have been creeping up a bit, but it is probably due to the cold I had along with a few other minor issues. My glucose meter average is about 115 now. When I asked about it, I was told not to worry, that just happens. I probably fluctuated with minor stresses before the transplant, but the numbers were so inconsistent that it was hard to detect. Now I can tell by looking at my logs when I have had a headache.
Due to the inspiration of Donna, the author of the book One Step Up From A Lab Rat, I have decided to start volunteering some time to the local chapter of the JDRF. I called them a few weeks ago, and am waiting to hear how I might be able to help. In the process, I joined Juvination, which is an online community connected with the JDRF, and I have met some interesting people.
Wednesday, November 18, 2009
These are pictures I took on my phone while I was on my customary walk along the Mississippi River after my checkup. For October, the weather was nice.
The results are back from my visit and look good.
The CBC was typical. WBC was 2.5, Hemoglobin was 11.4 which is a little low.
Blood chemistry tests were normal with the albumin at 3.6 and total protein at 6.5, both of which are just a bit low.
My A1c which is the 3 month overall average measure of blood sugar was 5.6 Normal is 4-6.
Fasting glucose was 97 and C-peptide was 1.23
Post-prandial (90 min. after meal) glucose was 171 and C-peptide was 4.96
The only thing that worried me was that despite my best efforts, I have lost another pound. I discussed this with Dr. Bellin. She didn't seem worried and we wondered if maybe this is just my new weight. I knew it was typical to lose some weight right after the transplant, but I didn't expect to keep losing. I know that I lost some during the CMV experience, but I expected to gain that back. I guess I will just stop worrying about it and just buy some new clothes. I am also planning on polling the other islet cell patients that I communicate with and see how their weight is behaving.
In the last week, I have visited my retina specialist and been told that my cotton-wool spot is gone, and had my CMV titer measured and it was negative, So that experience seems to be behind me now. I will continue to have my CMV measured every 2 months for awhile, just to be sure.
Friday, November 6, 2009
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!
Monday, October 26, 2009
Tuesday, October 20, 2009
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.
Friday, October 9, 2009
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.
Friday, September 25, 2009
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.
Sunday, September 6, 2009
Wednesday, August 26, 2009
Sunday, August 16, 2009
Saturday, August 8, 2009
The cotton wool spot in my eye was looked at by a retina specialist and it was determined that it was not due to the CMV. It is there because "I am no longer a teenager". It will have to be followed, but no need for immediate concern.
The CMV is about out of my system. I still get a little more tired than I should, but not often anymore. The infection control doctor said that I should be back to normal in about 2 weeks. He said this 2 weeks ago and I think he was right. I will be on medication for this for awhile and it will be followed for a long time. But for now, no worry.
The diarrhea is almost gone. I still take one immodium most days and that seems to keep it in check. I don't miss that at all. Taking my immunosuppressent meds with my meals is what caused it to become better. My last drug level test was within range, so hopefully I can continue doing this.
My blood sugars are almost back to where they were before the CMV. I was afraid to even hope for this at my worst point, so I am extremely pleased and relieved to see this. Dr. Hering said that he thought it would happen like this. I am glad to be wrong. I think the recovery of my blood sugars is paralleling the recovery from the CMV.
I am still waiting for the results of all my labwork from my one year visit to Minneapolis. My A1C was 5.7 which is 0.1 higher than at my 9 mos. visit, but the increase was due to the CMV I would assume. And it is still excellent.
The only bad thing to report is that all of my summer vacations are over. The last one was to Daytona Beach, FLA. My entire family was there, except for Cassie. Even Gary and Heather flew in from California. It was a great week and a perfect place to recoup. My only complaint was that my shins hurt from too much beach walking. Here are a few pics. At one point, we had 31 people present, and had about that the whole time. The weather was good and the games were fun.
Tuesday, July 21, 2009
Tuesday, July 14, 2009
In between the negative EBV and the positive CMV tests, I went to see my general doctor. She ordered a few tests that came back negative. I also just saw my opthamologist today. He found and irregularity on my retina called a coton wool spot. When I told him about the CMV, he said it makes sense and that now I should see a retina specialist. He said that the antiviral should clear it up, but that it should be followed up.
Things can sure get complicated. I really think I will be better soon. I have been on the medicine for 4 days now, and I can feel my energy coming back and the fever is getting better.
Gary and I leave in the morning for Minneapolis for my one year check up. I have been looking forward to it for a long time. It is too bad all of this other stuff is happening now, but I am planning on addressing each issue with Dr Hering and then putting it all aside and celebrating that I have reached my one year anniversary as an insulin free diabetic. One year ago, I never would have dared hope for such a thing.
Wednesday, July 8, 2009
Wednesday, July 1, 2009
Here are some pictures from our vacation to St. Thomas in the Virgin Islands.
Tuesday, June 16, 2009
Gary and I are heading to St. Thomas in the Virgin Islands soon. We have been really looking forward to the trip. We missed our vacation last year when I had the transplant. It will be so nice to enjoy a beach vacation such as this with no insulin pump to contend with.
Thursday, June 11, 2009
Thursday, June 4, 2009
I am taking the full dose, 6 pills a day for three days, and then no pills for three days. I am already on the second day of no pills and I think it is better. The third day of the pill days was the worst day yet.
I am still not good, but better. I am going to try not taking any pills for awhile and see how that goes, and then try the capsules again to see if they have a different effect. This sure is a crazy problem. It is so frustrating to have health issues limit my activities. I had to back out of my golf league this year, not because I don't feel like playing, but because there just are not enough bathrooms on the course.
I did learn one interesting thing about my crazy stomach. A few weeks ago, we went out to dinner with some friends and had a really long wait for our table. During the wait, I had 2 margaritas. After awhile, I noticed that the irritation that I had been feeling in my intestinal area was gone. I laughed about it at the time, but it has never come back!
Saturday, May 23, 2009
Wednesday, May 13, 2009
Wednesday, May 6, 2009
Wednesday, April 29, 2009
Saturday, April 25, 2009
Saturday, April 11, 2009
Sunday, March 29, 2009
Sunday, March 22, 2009
The drug levels for both the new immunosuppressants (Prograff and Cellcept) came back within the therapeutic range. This meant that I can start the weaning process of the Rapamune. On Thursday, I started taking 4 pills a day instead of 6, and will decrease by one pill per weak for four more weeks. I took a dose of Raptiva today, and will take my lasts dose of that in 2 weeks.
Wednesday, March 18, 2009
Thursday, March 12, 2009
Sunday, March 1, 2009
Thursday, February 19, 2009
I just got back from U. of Minnesota where I was able to participate in a hypoglycemia unawareness study. The study uses subjects who are participating in an islet cell transplant study as their subjects. It is designed to see where the glucose is concentrated in the brain during hyperglycemia. The test is run both pre- and post-transplant. I did the pre test last winter and just finished the post-transplant portion this week. The procedure is as follows: