I've been too busy to post because there's been a lot of stuff going on. First of all, I had my heart stress test done at UAMS on December 9. The drugs they gave me to slow my heart back down after the test made me feel really sick, and I felt awful the whole 4-hour drive home--I was drowsy and nauseated, felt like I couldn't focus my eyes, and I couldn't urinate although my bladder was full. My mouth was so dry I could barely eat a graham cracker. I've since been told my stress test was normal, thank God. They also did a bone density test, and I've been told that there's the potential for osteoporosis later on. They didn't use the term osteopenia, but I think that's what it would be called now. On December 13 we traveled to Dallas so that I could meet with the transplant team at Dallas Transplant Institute (DTI Baylor) on Dec. 14. The meeting with the transplant group lasted most of the day. We stayed at a hotel in Lewisville, then drove on the morning of the 14th to the Regal Row area, where the Transplant Inst. office and clinic are located. The traffic was horrendous, especially since it was raining really hard. It took us about 40 minutes to drive less than 10 miles. I had another EKG, a renal sonogram, a TB skin test, lots of blood work. I met with the social worker. She was a godsend because she called Express Scripts, my insurance company's pharmacy, to find out what my copays would be on the immunosuppressive drugs I would need after a transplant. There is a huge concern that a recipient may not be able to pay for the drugs and thereby lose the transplant. One of the drugs, called Valcyte, costs $1400 a month without insurance, and that's just one of the drugs; a transplant recipient may be on as many as 10 drugs or more, especially in the initial stage after the transplant. Thank God for my health insurance--my copay on the $1400 drug will be $25.
I met with the DTI nephrologist, a Dr. Melton. He was not as encouraging as Dr. Abulezz from UAMS. Melton said that there was no preference given to a former donor, and that the only way to get that preference would be for all the transplant centers in the region to agree to it. Furthermore, he also said that he would recommend that I accept an "expanded criteria" kidney (a grade B kidney, not the best). I met later with Helena Roman, the transplant coordinator assigned to me, and she said that former donors ARE given very high priority, so I don't know now whether Melton was misinformed or whether there is some miscommunication. Another thing I didn't like was that after I got through with all the physical tests I was told to come back at 3 p.m. for the educational seminar. It was only 11:30 a.m., and I didn't want to wait that long, so I asked if there was an earlier seminar. I was told that I was assigned to the 3 p.m. seminar because it was conducted in Spanish, and I was assigned to it on the basis of my last name! They assumed that anyone with a Spanish last name would not speak English. What other assumptions have they made about me based on my ethnicity? Wonder if Melton's recommendation to take a grade B kidney is colored by their view of ethnicity? How would I ever know?
On the donor front--Debbie, Juanita, and Janet have been ruled out as potential donors. Debbie because she had breast cancer this summer, Juanita because she has a lupus-like autoimmune disease that can attack her kidneys, and Janet because she is pre-diabetic. That leaves only my sister in law Janie (Arnold's wife) to be tested. She's talking to the UAMS folks, and has answered their questionnaire satisfactorily enough to warrant their telling her to go ahead and get tested for blood type. Turns out she's A+, and I'm type O, which I thought meant flat out that we would not be compatible. But UAMS says that I need to be tested for the presence of anti-A antigens. If I do NOT have those antigens, then I could accept a kidney from her, assuming that she is physically well enough to donate. The only way to find out if I have anti-A antigens is with a sophisticated blood test which the blood banks in NW Arkansas are not equipped to perform. Fadelle Powell, the UAMS transplant coordinator, is trying to find out whether the test can be done on blood collected here and shipped to UAMS or whether the test has to be done on "live cells," meaning blood that is tested right after it is drawn. If that's the case, I will need to travel to Little Rock to have the test done at the UAMS blood bank. I should find out next week whether I'll have to go down there.
Baylor DTI has rescheduled the second half of my interview to January 16. It was initially scheduled for Jan. 9. This interview/seminar will be at the Baylor Hospital facilities in east Dallas, close to where I used to live on Sycamore St. I am so thankful that we are familiar enough with the city to get around easily. I can't imagine trying to do this in a strange city, but we may have to do it if I go through the listing process at Barnes (St. Louis, MO).
My peritoneal dialysis catheter implantation surgery has been scheduled for Jan. 18 at Washington Regional Hospital. It will be embedded completely under the skin, and it'll sit there for at least a month before it can be used. Right now I'm hanging on the verge of needing dialysis; hope I can hang on until after mid February, when the catheter will be ready for use. Once I'm ready to start dialysis the doctor will make a minor incision into the flap of skin covering the catheter and pop it out.
I've been feeling pretty good the last few days. I've gotten rather tired on the days I've worked the whole day, but otherwise not too bad. I get a bad taste in my mouth occasionally, and I've had that for about 3 months. I'd started getting nauseated, and then I noticed that it happened on days when I ate meat/protetin more than once a day. So now I usually limit my meat intake to once a day. I have cereal or bread for breakfast, pasta or a cheese slice for lunch with fruit and/or veggies, and then a regular dinner with some meat, less than 3 ounces. I've lost several lbs. I used to weigh 105 lbs in my skin; last week I weighed 103 fully dressed at the doctor's office, so I'm assuming I weigh less than 100 lbs in my skin.
So here I sit on Christmas eve, facing a year of uncertainty. When will I need dialysis? Will I get a transplant? How is that going to affect me? Us? Will I continue to be able to work? I'd like to see the completion of the Batesville project, and I know that my boss wants me to see it through. I may have to work at home some. I figure that Ramiro can go into the office to pick up the submittals that I need to review, and I can do the rest via computer. Six months after his transplant my dad was starting to work again, so I know it's possible, and my work is less physcially demanding than his was. I want to stay positive and hopeful, but there are days when I feel weepy and sad, no matter how well things are going. Ramiro says that I should not cry since there are so many people working hard to help me. I've told him that I can't help it, that there are times when the tears and sadness just wash over me and I cannot stave them off. Truthfully, sometimes I don't know why I'm crying; I know I sort of feel sorry for myself, and I worry about the future, I worry about dying and leaving Ramiro alone. I worry about not being able to take care of myself and placing even more demands on him. I worry about money. I've always been so healthy and lived a pain-free life and I worry that it's ending, and that I'll feel sickly and bad the rest of my life. And of course I mull over all the issues about a living donor--am I worth another person's sacrifice? I've always had a rather high opinion of myself, and felt that I was a valuable asset anywhere I was. But it's quite another to think that my life is worth the physical/emotional sacrifice made by another to give me a kidney.
In past times, kidney disease was a kiss of death, so one thing I think about is that perhaps this is simply my signal to check out, and not undertake such heroic measures as dialysis and transplantation to extend a life that by ordinary measures would be extinguished now. Of course dialysis is within my economic/educational reach, and many would not consider it a heroic measure, would say that it is not much more than taking medication for another condition. But a transplant is surely a heroic measure by anyone's definition. And if I get a transplant, I would surely feel obligated to undertake every measure possible after that to keep it going and keep it working. And so it goes.
But it is Christmas eve, and I'll let this train of thought go for now. God bless us, everyone, and especially Ramiro who is the only person standing between me and the darkness.
