March 27, 2007
It is a good thing that I called you, or you would not have known that we moved the day before Thanksgiving. We spent Thanksgiving unpacking. I know it has been a good long time since I last wrote to you.
I am still fine from the transplant except for some minor GVH in the mouth and the fingernails. My blood tests are great, probably much better than the average person. Back in 2000 when I was diagnosed with Myelodysplastic Syndrome, I was also checked for a slow heart rate in the 40's. At that time, the heart specialist said that if it consistently dipped into the 30's, I would need a pacemaker (ticker booster). For the past several weeks, I have had the dips into the 30's more frequently. I had made an appointment for this last Thursday, but a week ago Friday, I had a lot of vertigo and felt "not great”. . We went to the emergency room and I remained in the hospital until last Sunday morning (about 45 hours).
On Tuesday, I had an appointment with a Dr. Gilligan, heart specialist. The sick sinus syndrome was at the point where I needed a pacemaker. I had all the pre-op work and was supposed to check into Chippenham Hospital on April 2 to have a pacemaker. I was not worried. The doctor said I would have more energy, sleep better, etc. Usually only a local is given, but he said I could have the works....la la land here I come. I warned him that I do talk and entertain while I am "out". I cannot put my talking agenda on paper, but it is funny. I use the same story every time and remember nothing. Unfortunately, the pacemaker had to be delayed because while in the hospital, I got a staph infection in my Hickman line. Well, I finally got the pacemaker and I have more energy and feel great.
I even told a cousin that next year, I might beat him at tennis instead of scrabble!!! He told me that I could probably play tennis, but as we age, we have an increased tendency to trip over our own feet. I better just stick to Scrabble and continue to exercise my mind. As soon as possible, we will resume our travel planning. We have trips to North Carolina in June and Michigan in July. Kelli and the boys will visit in June.
We love apartment living. When more than two people (or people over 65) visit, we will just rent the guest unit that is a very nicely furnished one-bedroom apartment only two doors from us. We have the convenience of a putting green, tennis courts, work out room and in the summer a swimming pool.
I hope all is well with you. I had my fourth transplant re-birthday on March 15, so I feel that I can do whatever I want to do. I use the philosophy "because I can".
All for now,
December 30, 2007
It is a good thing that we still talk on the telephone. This past summer was very busy. I got the ticker booster (pacemaker) in the spring. We had to cancel our trip to Georgia because of the surgery. In June, we camped in North Carolina, and Tyler spent several days with us. He kept his Poppy B busy at the swimming pool and fishing. I found I had plenty of energy for walking.
We did make it to Michigan for our big trip of the year. We left right after the 4th of July and were gone for almost three weeks. It was the most wonderful trip down memory lane. I just had a feeling that I had to reconnect with my past, as we are not getting any younger.
We left Virginia in the motorhome and traveled to Waterford, Michigan, to see my donor and her husband. We parked the motorhome at a state park. We had a wonderful time with Charlotte and Tom. After we left there, we traveled to Traverse City to visit one of my college roommates. While in Traverse City, we toured a winery in the heart of Michigan’s grape growing area and had a wonderful time visiting my former roommate and her husband on their beautiful farm. The doctor said I could taste the wine as he thought I was probably a “cheap drunk”. Well, I tasted the wine and just about hit the ceiling. The wine in a mouth with GVH was a big, big burn. I really think the doctor knew that would happen as usually alcohol is not allowed with my medications. I will wait ten more years before making the request again.
After leaving there, we traveled to Saugatuck, Holland, Kalamazoo, and Battle Creek. We then arrived in my hometown of Berrien Springs, Michigan. We parked the motorhome at a KOA campground just across the state line in Indiana. While there, we went to Warren Dunes State Park, where I had spent many summer days walking the dunes and swimming in Lake Michigan. It was a very windy day, but I did a little walking on beach until the blowing sand started to sting the skin. We drove around Berrien Springs and “visited” relatives in the Rose Hill Cemetery. We also went to visit my high school friends, Bonnie and Bob. Bonnie was also a college roommate. Another high school friend, Sandy, came to lunch. I had not seen them in 40+ years. The whole trip down memory lane was very meaningful for me. I will long cherish the renewal of past friendships.
In September, we spent three days in Williamsburg, Virginia, with the motorhome. I thoroughly enjoyed the entire outlet Christmas shopping. I corresponded via e-mail with a restaurant in Williamsburg that had passed the Virginia State Health Department food inspection. They said they would cook my meal according to my wishes….no spices, no pepper, no tomato…. We had a wonderful meal one evening and went back the next day for lunch. Besides shopping, we walked around Colonial Williamsburg.
In November, we visited Kelli and her family in Georgia. After a wonderful visit, we went to Myrtle Beach. We had never been there and plan to return. The temperature was in the 70’s, and we were the only ones walking on the beach. The ocean was beautiful and the air refreshing. My younger sister was also in Myrtle Beach for an art workshop, and we had a chance to visit Patti and her husband.
So much for our travels…. Scott and baby, Kyle, flew in from California for a visit. Kelli and the boys visited during the summer from Georgia. Kim and Tyler came often from North Carolina. Kim and Tyler spent Christmas with us.
There were some health issues during this time. I naturally had the pacemaker implanted. I also had another staph infection in my Hickman line and was on heavy doses of antibiotics by IV at home. I finally had the line removed and had planned to have a Smartport implanted at the same time as the removal. Well, it did not happen that way. The doctor said they could remove the Hickman, but the area would have to heal for 10 days before the implant of the Smartport. Because of my small size, there was no room to put the port. I waited 10 days and had the surgery to place the Smartport. I am skinny, so it looks like a fat button on my chest. I told the doctor that it was too bad that now I could finally go swimming, but I could not wear a bikini!!! Actually, what old woman of 67 would want to wear one.
Because of the GVH, I still have Photopheresis twice a month. I do have more energy, I am happy, and I just enjoy life. I can tolerate the lack of fresh veggies and fried chicken. I eat what I can and then drink four Ensures each day. I have increased my weight to between 114 and 118. I had to give all my size 6 jeans to Goodwill, and buy size eight. That is fine, because I love to shop. My blood tests continue to show great results. I am very healthy except for the mouth GVH. Oh, if I have not already told you, I do not have to have any more bone marrow biopsies. The blood tests tell the health story.
My advice for anyone going through a transplant would be to read everything, ask questions, stay active, and maintain a positive attitude. A person must be his or her own advocate.
Well, dear friend, I must close now. I will be sure to write again after my real birthday and before my re-birthday.