As part of the application process for the Dallas Transplant Institute, I collected a 24 hour urine sample and gave a blood sample on Monday, November 28. I got a call the following day from my nephrologist's office, saying that I needed to come in ASAP for my first ProCrit shot. When I went to the nephrologist on November 7, I was given some forms to sign so they could process the insurance/medicare application for me to get these shots, saying I'd be ready to start the treatment in December. However, my blood count has fallen so slow that the doctor didn't want me to wait that long.
Procrit is a synthetic form of the hormone erythropoietin, which is secreted by healthy kidneys and signals the bone marrow to make new blood cells. In renal disease, the kidneys make little or no erythropoietin, so blood count falls to dangerous levels. I was told my hemoglobin was down to 7.5, a level that would ordinarily require a blood transfusion. However, a transfusion would create antibodies in my system, which would make it harder to get a match in a kidney transplant.
So, I got the first shot today, and I'll get a second one on December 15. The nurse said I should feel some improvement between now and then. I've been feeling increasingly weak and cold. It doesn't help that we've had temps at night as low as 17-18 degrees. I've taken to sleeping in a sweat suit; it takes that much to keep me comfortable. At night, while watching TV, I cover myself with a fleece "snuggie" and then put a quilt over my feet.
I had a call from my friend Linda Rose on Sunday. Strangely, I found the call unsettling rather than comforting. When her husband died about 6 years ago, she went through a prolonged bout of grieving. Even two years ago, when she and Janet McKinnon and I got together for a spa weekend, Linda was still going on and on about losing Dee. Both Janet and I felt that she should have gotten over the raw parts of her grief by then; neither of us liked Dee very much for the way he treated Linda, so it was extra burden to listen to her pine for somebody that mistreated her. Anyway, Linda didn't offer much in the way of emotional support, merely suggesting that I try journaling as a way of getting past some of the emotional issues I'm dealing with. She said that she found it very healing in getting over Dee; well, maybe you can journal your way out of grief, but you can't journal your way to improved kidney function! In parting she added that she would send a lot of good thoughts my way, that if she prayed, she would pray for me, but that she doesn't pray any more. I know that she was raised as a Roman Catholic; the sister who lives with Linda was a nun for over 25 years; Dee belonged to Church of Christ and made Linda take a lot of classes in that faith, so it's not as if she has not had a life of faith before. Makes me wonder what's happened to make her stop praying.
Wednesday, November 30, 2011
Thursday, November 24, 2011
Thanksgiving Day 2011
We went to UAMS last week, and had our initial meeting with the Transplant Team. The doctor is Dr. Abulezz, a tall kindly man in his late 50's, I would guess. He asked a lot of questions about my health, listened to my heart, lungs, etc., ordered a bunch of tests to be done before I left the facility, and some to be done at some time in the future. The really good thing he said is that as a prior kidney donor, I will be given high priority on the transplant list. The other good thing he said is that he recommended AGAINST my agreeing to take an "extended criteria" kidney. An extended criteria kidney is like a grade B kidney; the best is a "standard criteria," and he said I should agree only to take the standard criteria. This nurse who collected the consent forms expressed surprise that I had declined consideration for an extended criteria kidney. I told her that was because of Dr. Abulezz's recommendation, and she said that the extended criteria kidneys were always offered to patients over 40. The gist of this is that I feel good about Dr. Abulezz's overall assessment of my health and chances for a successful transplant. They don't give grade A kidneys to patients who are not themselves grade A!
In addition to Dr. Abulezz, we also met with a number of other transplant team members. The insurance coordinator had reviewed my private (Aetna) insurance and Medicare, and concluded that insurance-wise I am "good to go." What a relief! The social worker asked questions about hobbies, exercise, etc. The dietitian didn't have much to recommend, since my weight is at a good level. I asked some questions about a dialysis diet, curbing protein, curbing potassium and phosphorus, and she said that since my personal nephrologist had not recommended any dietary changes yet, it was because I must still have enough kidney function not to need it. My next appointment with the nephro is Dec. 15; I'll know more then.
The visit to UAMS took all day Wednesday, so we waited til Thursday a.m. to drive to Texas. We got as far as Waco that night. Friday morning we drove to San Antonio. Our friends Glenn, Engracie, and their daughter Audra came in later, as did my sister and her husband. We all went out to eat at Pico de Gallo. Great Mexican food! Saturday we went to the Mercado, and had a late breakfast at Mi Tierra. Then we walked all around downtown and went to the Riverwalk Mall. Later that day Ramiro's brother, Ruben, and his wife Mary joined our group, as did Ramiro's nephew Mark, Mark's wife Kourtney, and Mark's daughter Tatum. We all went out to eat at La Margarita, except that Mark and his wife had to leave before we were seated, since Tatum was getting fussy and hungry as it was getting quite late before we were seated.
We left Sunday morning and drove to Austin, where we (Ramiro, Juanita, Bill, and I) met my nephew Phillip and his partner Allen for breakfast at the Driskill Hotel. Very elegant! Then we went to see the furnished model of a condo that Phillip and Allen are buying. It is in the area of the old Austin airport. Ramiro and I looked at the condo and are also interested in buying something like it if we ever sell our Missouri lake house. Perhaps next year!
After that, we drove on to Dallas, where we met my friend Bennett Stokes for dinner at Mughlai Indian Restaurant. It was delicious! Bennett looks the same as ever, maybe a little grayer, but that's all. He's 78, but doesn't look it. Ramiro and I concluded that he'll be one of those people that live to be well into their 100's. Monday morning the weather turned rotten--cold, rainy, gray. We drove in the drizzle all the way to Fayetteville. Ramiro dropped me off at the office, where I knew I would have a pile of work waiting for me.
This is the first thanksgiving in over 25 years that I won't have any company. Glenn and Engracie are staying in Texas because Engracie's mom is rather broken up over the recent death of her mother. I'm glad we saw them in San Antonio. We were supposed to have dinner with my sister and her husband at their house, but last Monday she called to say that she had had a stomach bug and was afraid that she "would contaminate the food" if she cooked. She said that she was so afraid for my health, that she thought it was best not to cook. Then she added that she was prepared to cook, and that if I wanted to risk my health, she would do so. Well, what fool would accept that kind of invitation? The real truth is that, like a lot of other times, she changed her mind about what she wanted to do. She had previously mentioned that she wanted to run in the Turkey Trot in Rogers on Thanksgiving day, and it was obvious to me that her "concern" for my health was simply a way of getting out of the cooking without seeming to have changed her mind. A day later she asked if I had made dinner reservation for the 4 of us somewhere. I texted back that Ramiro and I were going to do our own dinner. Her reply: "Meaning what?" I texted back that her fear that she was so contagious worried me that I could get sick being around her, and that since restaurant food is so high in sodium, my best bet was to eat at home. I didn't hear from her again until this a.m., when she texted "Happy Thanksgiving. I am thankful for my family."
I miss Glenn, Engracie, and Audra. When they come, the house is loud, crowded, busy, messy, and fun. We laugh a lot, and Glenn takes pictures of everything that we do, from cooking to eating to goofing off. Glenn always carves the turkey, Engracie helps with the cooking, and Audra gets into everything. This will be a quiet day. I am thankful for many things. I am thankful for my husband, for the friends who have offered to be tested as donors, for the people who are praying for me. I am thankful that I feel as well as I do. I am thankful for a beautiful day, and a beautiful home, lots of food, good clothes, a job I enjoy. I know that it would really tire me out to have to entertain a lot of people this Thanksgiving, but I miss the fun of having a group to cook for and eat with.
In addition to Dr. Abulezz, we also met with a number of other transplant team members. The insurance coordinator had reviewed my private (Aetna) insurance and Medicare, and concluded that insurance-wise I am "good to go." What a relief! The social worker asked questions about hobbies, exercise, etc. The dietitian didn't have much to recommend, since my weight is at a good level. I asked some questions about a dialysis diet, curbing protein, curbing potassium and phosphorus, and she said that since my personal nephrologist had not recommended any dietary changes yet, it was because I must still have enough kidney function not to need it. My next appointment with the nephro is Dec. 15; I'll know more then.
The visit to UAMS took all day Wednesday, so we waited til Thursday a.m. to drive to Texas. We got as far as Waco that night. Friday morning we drove to San Antonio. Our friends Glenn, Engracie, and their daughter Audra came in later, as did my sister and her husband. We all went out to eat at Pico de Gallo. Great Mexican food! Saturday we went to the Mercado, and had a late breakfast at Mi Tierra. Then we walked all around downtown and went to the Riverwalk Mall. Later that day Ramiro's brother, Ruben, and his wife Mary joined our group, as did Ramiro's nephew Mark, Mark's wife Kourtney, and Mark's daughter Tatum. We all went out to eat at La Margarita, except that Mark and his wife had to leave before we were seated, since Tatum was getting fussy and hungry as it was getting quite late before we were seated.
We left Sunday morning and drove to Austin, where we (Ramiro, Juanita, Bill, and I) met my nephew Phillip and his partner Allen for breakfast at the Driskill Hotel. Very elegant! Then we went to see the furnished model of a condo that Phillip and Allen are buying. It is in the area of the old Austin airport. Ramiro and I looked at the condo and are also interested in buying something like it if we ever sell our Missouri lake house. Perhaps next year!
After that, we drove on to Dallas, where we met my friend Bennett Stokes for dinner at Mughlai Indian Restaurant. It was delicious! Bennett looks the same as ever, maybe a little grayer, but that's all. He's 78, but doesn't look it. Ramiro and I concluded that he'll be one of those people that live to be well into their 100's. Monday morning the weather turned rotten--cold, rainy, gray. We drove in the drizzle all the way to Fayetteville. Ramiro dropped me off at the office, where I knew I would have a pile of work waiting for me.
This is the first thanksgiving in over 25 years that I won't have any company. Glenn and Engracie are staying in Texas because Engracie's mom is rather broken up over the recent death of her mother. I'm glad we saw them in San Antonio. We were supposed to have dinner with my sister and her husband at their house, but last Monday she called to say that she had had a stomach bug and was afraid that she "would contaminate the food" if she cooked. She said that she was so afraid for my health, that she thought it was best not to cook. Then she added that she was prepared to cook, and that if I wanted to risk my health, she would do so. Well, what fool would accept that kind of invitation? The real truth is that, like a lot of other times, she changed her mind about what she wanted to do. She had previously mentioned that she wanted to run in the Turkey Trot in Rogers on Thanksgiving day, and it was obvious to me that her "concern" for my health was simply a way of getting out of the cooking without seeming to have changed her mind. A day later she asked if I had made dinner reservation for the 4 of us somewhere. I texted back that Ramiro and I were going to do our own dinner. Her reply: "Meaning what?" I texted back that her fear that she was so contagious worried me that I could get sick being around her, and that since restaurant food is so high in sodium, my best bet was to eat at home. I didn't hear from her again until this a.m., when she texted "Happy Thanksgiving. I am thankful for my family."
I miss Glenn, Engracie, and Audra. When they come, the house is loud, crowded, busy, messy, and fun. We laugh a lot, and Glenn takes pictures of everything that we do, from cooking to eating to goofing off. Glenn always carves the turkey, Engracie helps with the cooking, and Audra gets into everything. This will be a quiet day. I am thankful for many things. I am thankful for my husband, for the friends who have offered to be tested as donors, for the people who are praying for me. I am thankful that I feel as well as I do. I am thankful for a beautiful day, and a beautiful home, lots of food, good clothes, a job I enjoy. I know that it would really tire me out to have to entertain a lot of people this Thanksgiving, but I miss the fun of having a group to cook for and eat with.
Tuesday, November 8, 2011
Dialysis is Imminent
November 7 I had an appointment with Dr. Moulton, my nehrologist. My friend Debbie Phelan and my husband both went with me to the doctor. The outcome of this visit is that he recommended I make an appointment with the surgeon for the implantation of a peritoneal dialysis catheter. I asked if I could wait until after the Christmas holidays, and he agreed. I go back to the doctor the first week in December, at which time he'll schedule the surgery. The cath needs to be in place at least 4 weeks before dialysis can start, so I imagine I'm looking at starting dialysis sometime in February. I also asked him about getting on the transplant list at hospitals other than UAMS; he recommended the Dallas Transplant Institute (DTI), and the hospital in St. Louis, where he trained. I have the paperwork ready to fax to DTI; the paperwork for St. Louis likely won't be mailed until after I have been contacted by DTI.
This morning at breakfast my friend Debbie told me that she and her husband had talked about it, and that she is ready to donate a kidney to me. Needless to say, it brought immediate tears to my eyes. As a kidney donor myself, I understand the sacrifice this means, and I am absolutely blown away by the idea that someone not related by blood or marriage would even consider doing this for me. I hope I don't have to take advantage of this offer; perhaps there will be a donor somewhere else. I am crying as I write this, so I'll stop for now. But I love her more than any words can express.
This morning at breakfast my friend Debbie told me that she and her husband had talked about it, and that she is ready to donate a kidney to me. Needless to say, it brought immediate tears to my eyes. As a kidney donor myself, I understand the sacrifice this means, and I am absolutely blown away by the idea that someone not related by blood or marriage would even consider doing this for me. I hope I don't have to take advantage of this offer; perhaps there will be a donor somewhere else. I am crying as I write this, so I'll stop for now. But I love her more than any words can express.
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