Things really got on a roll this past week.
Last Monday I was at my doc's seeing him, getting labs and platelet transfusions. Platelet transfusions have moved up to three times per week, as my counts are staying dangerously low. I hope I can put off getting them daily, but it's going to be iffy. It seems I get a transfusion one day and the next my count is still down under 10. Lately it has ranged between 2 and 4 with transfusions every other day. I just look at myself and bruise. :-( So I got done with the transfusion and Mike and I went off to Nashville. After checking into the hotel and having a drink we went to dinner at The Tin Angel. We really do like that place!
Tuesday morning we over at Vanderbilt at 7:30. First there was the caregiver's class. Mike was in that all morning, but I left at the break to go get tests: labs, chest x-ray, bone density scan, and muga scan. I was supposed to have a bone marrow biopsy, but there were no openings in the schedule. However, I was NPO since midnight. We got done around 2:00 and went to lunch at PF Chang's before heading home. I had been wanting some lettuce wraps. Then we shared Orange Peel Chicken, Cashew Almond Chicken, Sichuan Asparagus, and brown rice. It was great.
Wednesday, (Mike's Birthday!) I went early to the blood lab for a platelet transfusion. Then it was off to my OB/GYN to make sure all that stuff was OK. Then back to the lab for blood tests. My neutrophils were 0.7, but my platelets were only 4. :-(
Thursday we got up early and went back up to Vanderbilt. NPO again, because this was bone marrow biopsy day. I also met with Donna (my CRNP) for several hours, had labs, met one of the transplant doctors, got a platelet transfusion (they were back under 10) and got the bone marrow biopsy. Lunch was at The Tin Angel where I had some of the best trout I have ever eaten. Then we headed for home once again. Thursday was also Upper School Awards Day. DD#2 got a silver medal in Latin for her scores on the National Latin Exam and she also got the award for Stagecraft.
Friday, back to my doc to see his CRNP, get labs and transfusions of both red cells and platelets. My platelets were down to 2, despite having gotten a unit of them the day before. My neutrophils were down to 0.4 and my red count was also quite low. I got transfused with 1 unit of platelets and 2 units of red cells, with instructions to be extremely careful on Sunday and Monday. The 0.4 neutrophils mean that I am neutropenic again. Have to wear the mask when I go out and not eat uncooked veggies outside my home. DD#2 took my car and went off to spend the weekend with Abbey as they have both been so busy with school that they haven't seen much of each other lately.
Saturday: My new desktop computer got ready right before closing time at GigaParts Saturday evening. Yea! It is very spiffy and extremely fast. 6Gb ram, 64bit processor and Vista. We were right next door to TerraNova, an Italian restaurant we've been wanting to try. It was a little earlier than we normally eat dinner, but went anyway. We shared shrimp for an appetizer, then I got Chicken Marsala and Mike got Pecan Crusted Tilapia. It was a good experience and if we are in the neighborhood again we will go back.
Sunday: Spent most of the day loading things on the new computer. First up was CS4 Master Suite. Oh I'm excited and boy do I love this version of Photoshop! Next was my Palm software. I am so irritated with Palm. It was a super major hassle to get Palm software loaded on the laptop a few weeks ago for the Tungsten E2, but with Donnie's help I finally got everything going. Now I found out that USB HotSync is not supported on the 64bit system. I have to buy a bluetooth device for the desktop! Amazon to the rescue. One is on the way and should be here Wednesday. Also discovered I have to update all my AutoFX plug-in software that goes with Photoshop. Some of that is downloadable, but at least one is coming on CD. Hopefully it will get here this week.
And here we are today. I know I need platelets as my gums are bleeding and I look like I have a bad case of the measles. Will get labs and transfusion first thing tomorrow at Vanderbilt. I also have to have pulmonary function test, TB test, meet with the financial counselor and the social worker (who will give me a socio-physcological exam). Then it's back home again to wait.
After all my test results get back (hopefully tomorrow or Wednesday) the transplant doctor will review everything to see if I pass. (So far, so good, btw). Then Vanderbilt sends the go-ahead info to Blue Cross. Someone there reviews it and approves it. That usually takes a couple of days. If all goes very smoothly that approval could get back to Vanderbilt by Friday, but that's probably wishful thinking. As soon as insurance approval comes, the transplant coordinator will activate my donor.
As of last Thursday, I have two who are perfect matches and two more who's tests results weren't final. Should find out about those two tomorrow. I asked what other criteria are used if there are multiple perfect HLA matches. Age (younger is better), CMV (I am positive, so a positive donor is better), sex (Male is better than females as with pregnancy different antibodies are developed that may not show up. Better chance of no graft vs. host disease if there are no weird antibodies.) and other things that the coordinator did not get into detail about.
I am keeping my fingers crossed that the donor will get activated next week. Once activation happens, the timeline is up to the donor. He will have to get a physical, have several days of neupogen shots, and then have his stem cells harvested.
If all goes well, Mike and I may be moved to Nashville by our 31st wedding anniversary - 20 June. We are planning to look at some apartments tomorrow afternoon before we come home. There is a complex right across the street from Vanderbilt that rents short term and will wind up being less expensive than an extended stay hotel. It is a fully furnished one bedroom apartment with a full kitchen and separate bedroom. The only extra we would need to buy is high speed internet service. All other utilities are included. So I hope this works out. I like being right across the street from the medical people. Particularly since I am not slated to be in the hospital more than four days as long as all goes well.
February 2017 Newsletter
5 hours ago