October 24, 2015

Dear Friend,

I just checked out this webpage and realized that it has been almost a year since I sent my last update. At that time, I was grumbling about the cold weather. Well, I cannot grumble today as we are having temperatures back in the 70s for several days. Last week I could grumble as I was cold.

So much has happened since my last letter to you. I apologize for the lapse of time. The winter holidays were pleasant as we were with family for the holidays. We had Thanksgiving here and Christmas at Kim's. Scott and Kyle were here from California in November. Kelli, Mike and Cameron visited us in late July.

I probably mentioned before that Bentley came to live with us in July of 2014. Bentley is a little shorkie (shih tzu/yorkie mix) and is now 1 years old. He has his own crate for sleeping and also stays in it when we aren't here. Bentley also has his own car seat so he can see out the window. He really looks cute in his yellow rain slicker. Naturally, he is not spoiled! Oh! He also likes an egg for breakfast.

Recuperation from the hospital stay with peritonitis in August of 2014, took a long time. It took me months, but eventually I was able to have a new catheter and restart the peritoneal dialysis. I have not had any problems with this catheter and continue with my dialysis at night while I sleep. As a result of this, we do not travel except for day trips as I would need a huge vehicle to transport all the supplies for an overnight trip. I also would worry about staying in motels because I could not control the sanitation issue. I think I have become a real germaphobic person.

One problem resulting from the stem cell transplant, chemo, radiation, and GVH of the mouth has been the recurring dental problems. Remember I mentioned before about the tooth falling out. Well, I got used to that and it really wasn't noticeable, but then a front tooth chipped. I went to the dentist to find out that he could not do anything for me as the damage extended to other teeth. The GVH resulted in extreme dry mouth which eventually damaged the teeth. He sent me to a dental specialist. I had my consultation in late August and the first set of impressions. I had to get a second set of impressions and the next available opening was October 14. I was not told and discovered when I got home that the removal of the impression took half of a back tooth. Well, to make a long story short, I also saw an oral surgeon. I was set to finally have oral surgery on November 19, but got a call last week that he will be out of town. My new surgery date is December 3. No, I am not happy about any of this. If I had known that this could be a post-transplant activity, I would have still had the transplant.

I try to conquer each bump in the road. There have been many, but I am fortunate to be a 12 year 7 month survivor. At that time in 2003, it was probably not known what complications there might be 10 plus years later. The End Stage Renal Failure is also the result of the chemo, radiation, and medications from the transplant. The dental problems are a result of the graft vs. host disease following the transplant. We knew I would probably have the GVHD, but not the damage from it. Following transplant I had GVH of the lungs, skin, and mouth.

My blood tests remain stable, but I do receive EPO injections twice a month. Healthy kidneys produce EPO to trigger the production of hemoglobin. With end stage renal failure, sufficient EPO is not produced. I also take Renvela, a binder to remove excess phosphorus from my system as the kidneys can no long sufficiently remove it. Fortunately, I still have some kidney function. The adequacy test for that is done every three months and the last one was even better than the previous tests. The dialysis is working. I had been experiencing extreme fatigue and a little more weight loss. My TSH was too low and my thyroid medication dosage has been changed. My weight now is 82 pounds, and I hope now I will gain a little weight.

I share the medical information in the hope that my experiences will help others. It has hard to believe that I was diagnosed with MDS (blood cancer) over 15 years ago (June 1, 2000), and my transplant was in March of 2003. I may have helped a few people as my website has visited 17,705 times. I would be happy if I had helped at least one of those people. I have met many people on this journey and become friends with other MDS patients. I care about them and their journeys.

I hope you have a wonderful holiday season with family and friends. I welcome communication from others. It is important to be your own health advocate. Research and ask questions, keep a record of blood test results, and make sure your health care is a team effort and you are part of the team. Remember to smile each day and be thankful.

Love you,

Shirley