HHT, continued

Thu., February 26, 09:12 AM

The day may come when I want to remember just when everything took place. With that in mind, I will just list a few items.

  1. A couple of Mondays ago, I went for the blood tests that scared everyone so badly. I felt a little tired, but not sick. I was able to drive over there by myself. (It isn’t far.) Everything except the blood iron checked out well.
  2. The Monday after that (February 16), U.D. drove me up to see my doctor. She was very concerned about my blood. I brought her information about the HHT center, because I still refuse to have this condition treated by anyone who is not familiar with it. Dr. H. made some phone calls and by the end of the week, people had contacted me.
  3. On February 23, I went to the HHT center for the first time. I had a contrast echocardiogram; my heart is fine. (Just as I had told them.) I saw the doctor in charge, who “formally” diagnosed me with HHT. He did it the easy way, that is, the criteria they were using forty years ago: family history, family member(s) already formally diagnosed, and the little red telangiectasias on my hands and face and mucous membranes.
    Dr. W. agreed that I should see experts. He was glad that I have an appointment with an ENT who knows the condition. (Formerly with the HHT center, he is now chief of surgery at another hospital.) Dr. W. insisted that I have red blood cells transfused and spoke to Dr. H.’s office to set it up. He also suggested that I not drive for the time being.
  4. I spent Tuesday (February 24) at the hospital getting my red cells. It was a long day — an hour to be typed and cross-matched, two and a half hours for each unit, with saline in between. I read, I did crosswords, I crocheted, and I napped. Nevertheless, I was tired.
    Because no one would be home to let Husband in, U.D. had to pick him up at Day Care and get him settled at home before she came to get me. Somehow everything got done, including suppers, and I went to sleep. I slept all night and was just as tired in the morning.
  5. Next week I have an appointment to see the ENT, about two or three towns down the pike. We haven’t worked out the logistics for that yet. We may be too late to pick Husband up afterwards, which means he may have to stay home alone — generally, not a good thing.
I slept most of yesterday, but did not bleed. I tried taking some extra iron in the evening; maybe the extra red cells will absorb it better. So far, so good. I am not quite so tired this morning, which is a good thing because I have bookmobile today.



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