Transplant Day, Sunday May 13, 2012

Sunday, May 13, 2012. Mother's Day Not a day I usually celebrate, but today was different. This is the first day of the rest of my life. How trite that saying is, and yet how true. No matter the outcome, the rest of my life will be different. If the transplant takes place, I will forever be on antirejection meds, and have a whole new set of health concerns. If the transplant doesn't take place, I will be extremely let down, and it will be hard to leave here after all this hoopla. I refuse to contemplate that the transplant could take place and then be rejected or fail to work. Dr. Rice, a nephrologist, came to talk to me. She told me what would happen in the operating room, and asked if I had any questions. I asked what I would feel once I came out of surgery. She said I would be extremely bloated and swollen from the waist down. She said this was done on purpose, by pumping IV fluids into me at a fast rate, so that the new kidney would be well flushed as it started to establish itself in my body. Because the toxin concentrations (creatine, Blood Urea Nitrogen (BUN)) and other waste products are in large concentrations in my blood stream right now, the extra fluids help to dilute them so that they don't overwhelm the kidney. She said the bloating would be very uncomfortable, and my skin would feel tight and I wouldnt feel right. Also, she said that they would insert a lage IV in my neck once I was sedated, and that would be the line through which the large volume of fluid would be introduced. Also, that line would serve as the access port for any medications and blood draws, so it would stay in my neck the whole time I was in the hospital. They kept referring to the neck IV as being large, and I had visions of a hose sticking out of my neck. She said something that made me think that although the surgery was scheduled, that it might not take place, and so I asked her when I would know that it was a "GO." She said "it's not a go until the kidney is attached to you and you get sewn up. If the surgeon opens you up, and your anatomy doesn't look like right to him, he an cancel. If he starts to place the kidney in you, and something doesn't look right, he can cancel, if there's anything he doesn't like about what's going on, he can cancel." Great, I might be sedated, wake up thinking I have a new kidney, and find out it was all for nothing! Ramiro returned around 6:15, which meant he ust have left Dallas around 5:30. Not much sleep for hiim either. He said he was troubled wit leg cramps all night, and got up at least once an hour to walk. I figure it was the stress. Around 6:45 a.m., I was wheeled to the operating room. Ramiro and I met with Dr. Nicholas Onaca, the transplant surgeon. He again explained the procedure--the large IV, the incision in the lower right side of my belly, and said that it usually takes about 4 hours, but it could go faster. I learned something about the donor for the first time. He said that the donor was a 27 year old man with no known health problems. However, he had fainted for reasons unknown and had fallen, hitting his head. The man had sustained irreversible brain injury. He didn't say it, but I've been told that that kind of injury makes for the ideal donation because the organs are alive the whole time. Dr. Onaca said that once he knew the organ was so top notch, he thought it should go to me, as a reward for myself having donated. And when the match was good, he said he knew it was the right way to go. I kissed Ramiro goodbye, and told him he was the best husband ever, and thanked him for coming this far with me. I felt teary eyed, but didn't cry. I knew they were waiting to sedate me.

Kidney transplant!!!

Today I celebrated my 2 week anniversary of my kidney transplant. I will try to backtrack and recreate the story as it developed. Friday, May 11,2012 Ramiro and I decided to go to Dallas to visit his family and to deliver a baby quilt that I had made for Felece Vida Caballero, the infant daughter of Eddie and Freedom Caballero. Eddie is the son of Connie and Eduardo Caballero, Ramiro's sister and brother in law. I had made the baby quilt and mailed it, but for unknown reasons the package was returned as undeliverable. We decided that hand delivery was safer. We left Arkansas Friday morning, with plans to return on Sunday, and got a hotel room at Country Inn and Suites in Lewisville. Having gotten two calls as backup for transplant the weekend before, we decided to take our hospital bags with us as well, just in case we got another call. We took Preston to the kennel, again on the theory that if we had to stay longer, or had to travel to Little Rock, at least we would not have to worry about him. We left Grace at home, but she does well on her own for a week at a time. Friday Ramiro, Connie, Eduardo (Guero), and I went to dinner at Aw Shucks, a seafood restaurant. I had a platter of steamed snow crab claws. They were delicious! Id been wanting to try them ever since I first went to Big Shucks restaurant in November of last year. Saturday, May 12 Ramiro and I were at our hotel in the Vista Ridge mall area of Carrollton, getting ready for breakfast when my cell phone rang. It was Bettina Herrera-Go, with Baylor All Saints Hospital in Ft. Worth, calling to say that they had a standard criteria kidney that would be available later that day. She said that she knew we lived far away, and wanted to know how soon we could travel to Ft worth. I told her that we were in the Dallas area, and could be in Ft. Worth within the hour. She was excited about that, and directed us to go to Baylor Hospital,in east Dallas first, for the blood work needed for tissue typing. Knowing I might be having surgery later that day, I asked her if I could have breakfast before going for blood work! She asked that I have a light breakfast, so we went down to the hotel's complimentary breakfast. I got some fruit, a banana nut muffin, and coffee. I ate some fruit, but the muffin was too much for me. I was starting to stress out about whether this was to be the day. We went to Baylor,Dallas, where theytook 21 vials of blood. Ramiro had waited for me in the car, and he said I looked dazed when I got back. I did feel a little dazed, partly from seeing them extract so many vials, especially when the nurse told me that when they take so many tubes, it is not uncommon for the vein to collapse. But mine held up, and she did not need to re-stick me. The nurse was very kind, telling me "we're going to take care of you". When I first got the lab as Bettina had directed, the nurse first had to take me to register (the eternal paperwork)and I appreciated that she took me rather than just directing me, especially since I was not familiar with the hospital. Once all the blood had been drawn, we started out for Baylor in Ft. Worth, which we had never been too. Fortunately, we had the foresight to put into our suitcase the maps and directions that the hospital had mailed to us. We found it without any problem, the only traffic delay that we encountered was a baseball game going on at the Ranger stadium. We reached the hospital around noon, and went to the emergency room as directed. As soon as I said I was a transplant patient who had gotten a call from Bettina, I was whisked away to a small office where all the paperwork was ready. Then we were sent up to the 8th floor. She asked whether I needed a wheelchair. I declined, knowing that once you check in, they hardly let you walk on your own. Once in our room (Room 16) on the 8th floor, I was asked to get into a gown, and they would start all the lab work needed for prep. The parade of nurses began in earnest then. I was told that I could not eat anything because the surgery could be scheduled for that evening. I began to think about the blueberry muffin that I had not been able to eat at breakfast. I was told at one point that the the organ harvest was about to begin, but that the kidneys would be harvested last, because those could be put on a pump to keep them alive. I believe the kidneys were harvested around 3 p.m. At that time, I had no information about the donor, although I did know that it was a standard criteria donor, which is the best. Sometime after 3 p.m., I was told that the surgery was scheduled for early the next morning, so it would be all right for me to have lunch. Ramiro went to the cafeteria and got me a grilled chicken sandwich, which I found very tasty and ate in its entirety, two slices of bread and all, something I never do because of blood sugar concerns. The rest of the afternoon involved getting IVs in my arms, I was given some soap to wash my belly with both that evening and again the morning before being taken to surgery. I was just glad to be able to take a shower, since hospital stays typically mean you don't get to shower. One of the nurses (an Asian male) kept coming in to tell me that they were waiting for the results of the tissue typing, which was the blood work that was being done at Baylor Dallas. I knew that if the tissue typing was not good, the transplant would be cancelled. I prayed that the donor and I would match. Finally he told me that they had gotten the results back, and everything looked good. Ramiro went back to the hotel in Dallas; I wanted him to be sure to get a good night's sleep, and he would not be able to do that sitting in a recliner in the hospital room. I was given the option of going back to the hotel room, too, so long as we were back "first thing in the morning." I asked what time that would be, and they said about 4 a.m., so I declined, saying I don't do 4 a.m. Besides, staying in the hospital I would be in their care and control, so there would be no questions about what I had eaten, whether I took the shower, etc. And I wouldn't have to worry about traffic snarls that could delay us. I had a bunch of phone calls, from people I had called earlier, including Debbie, my sister, and Mother Pam, our rector. At this point, all I could say was that the surgery was scheduled for 8 a.m. I stayed up until about 11 p.m., and then slept until 4 a.m., when they woke me up for the shower and other last minute preps. Ramiro showed up around 6:15, so I knew he had not slept any more than I had. Sunday, May 13, 2012. Mother's Day Not a day I usually celebrate, but today was different. This is the first day of the rest of my life. How trite that saying is, and yet how true. No matter the outcome, the rest of my life will be different. If the transplant takes place, I will forever be on antirejection meds, and have a whole new set of health concerns. If the transplant doesn't take place, I will be extremely let down, and it will be hard to leave here after all this hoopla. I refuse to contemplate that the transplant could take place and then be rejected or fail to work. Dr. Rice, a nephrologist, came to talk to me. She told me what would happen in the operating room, and asked if I had any questions. I asked what I would feel once I came out of surgery. She said I would be extremely bloated and swollen from the waist down. She said this was done on purpose, by pumping IV fluids into me at a fast rate, so that the new kidney would be well flushed as it started to establish itself in my body. Because the toxin concentrations (creatine, Blood Urea Nitrogen (BUN)) and other waste products are in large concentrations in my blood stream right now, the extra fluids help to dilute them so that they don't overwhelm the kidney. She said the bloating would be very uncomfortable, and my skin would feel tight and I wouldnt feel right. Also, she said that they would insert a lage IV in my neck once I was sedated, and that would be the line through which the large volume of fluid would be introduced. Also, that line would serve as the access port for any medications and blood draws, so it would stay in my neck the whole time I was in the hospital. They kept referring to the neck IV as being large, and I had visions of a hose sticking out of my neck. She said something that made me think that although the surgery was scheduled, that it might not take place, and so I asked her when I would know that it was a "GO." She said "it's not a go until the kidney is attached to you and you get sewn up. If the surgeon opens you up, and your anatomy doesn't look like right to him, he an cancel. If he starts to place the kidney in you, and something doesn't look right, he can cancel, if there's anything he doesn't like about what's going on, he can cancel." Great, I might be sedated, wake up thinking I have a new kidney, and find out it was all for nothing! Around 6:45, I was wheeled to the operating room, Ramiro was with me when I met Dr. Nicholas Onaca, the transplant surgeon.

Earring Maids

Today I have an appointment with the audiologist to get my hearing aids. I had my hearing tested about a month ago, and Dr. Cashman confirmed that I have significant hearing loss in both ears at the high end of the range of human voices. That means that men's voices are easier for me to hear and understand than women's voices. I have mostly noticed that I have a problem when I'm watching TV--a lot of times I just do not hear clearly enough to understand the dialog. Tonight we are having dinner with my sister and her husband at their house.They are in town for a week. She served salt free pollo con calabase and O'doul's alcohol free beer. The beer tasted surprisingly good. I wore my hearing aid; it will take some getting used to. Voices sound a little tinny, but the audiologist said it's because I'm hearing some of the higher pitched sounds that I no longer heard. She said in time that will sound normal again. I only got the hearing aid for my right ear because the one for my left ear did not fit perfectly. It felt like it was too long, and it touched my eardrum. The audiologist tried polishing it down, but when I continued to feel the tip against my eardrum, she said she'd send it back. It will be close t 2 weeks before it comes back, so she rescheduled my next two appointments. I told her that I thought I might be close to geting a kidney transplant because of where I am on the transplant list. She was very understanding and said only that if I went to the hospital, not to take my hearing aid with me because nurses and aids were notorious for throwing them away when they cleared away food trays or cleaned the the room. She said as soon as I knew anything, call them and cancel the appointments.

Second Call About Kidney Availability

On the evening of Sunday, May 6, Ramiro and I were watching TV after a busy day of church, shopping, and gardening. The house was really clean and tidy because Ramiro had done an outstanding job of getting things ready for our guests last Friday for the dinners for 8. I had a premonition that I'd get a call about a kidney, so I went about and did some things to get ready in case we had to leave in a hurry. I filled out a card for the post office to hold our mail; I wrote a note to our neighbor about picking up our newspapers/mail. I gathered up some personal belongings that I will need at the hospital. Then I sat down to watch TV, cell phone close to me. Sure enough, I got a call from Angie Wilson, transplant coordinator from Baylor Dallas, asking about my availability for transplant. She told me first not to get too excited, because she said the chances were rather high that the kidney would not be given to them because there were two other patients (in other hospitals) that were ahead of me. The donor was a 44 year old woman with no health issues, so this would be a standard criteria kidney. She asked if I was on antibiotics for any reason (no); whether I was running a fever (no); when was my last dialysis (not on dialysis yet); and could I be in Dallas the next day (yes). She said that the donor's surgery time was not yet known, so she was not sure when things would happen, and guessed that it would be early Monday morning before she would know whether Baylor was getting one of the kidneys. She left a phone number where I could reach her if I had not heard from her by next morning. I know that I would accept the kidney if it became available, so we immediately went into action. Ramiro went next door and told our neighbor that we might be going out of town early the next morning, and asked him to pick up mail and newspapers. I took a shower and packed everything I would need--one small bag for the hospital, one larger bag for the month or so that we would need to stay in Dallas. Ramiro finished his packing and got things ready for Preston so he could be dropped off at the kennel. If we could, we'd catch Grace in the morning and take her to the kennel, too, or she will have to stay home alone for a week or so, and then we'd make arrangements for someone to come and feed her/change her litter box. We went to bed around 11 p.m. It was stormy that night, with strong winds and lightning/thunder, which made Preston bark wildly through the night. The barking, the storm, and waiting for the phone to ring all added up to a fitful sleep. By 7 a.m., I knew we were not getting a call, but I called Angie anyway. Of course I got the answering service; the woman told me that I had called the wrong number, that she'd have to look up the account information, and twice asked me for my name and phone number. Finally she told me that she'd have someone call me. Half an hour later I got a call back from a Dr. Cooper, who simply identified herself as such. I said hello and waited for her to update me, but then she said "do you have a question?" So I explained that I had called for Angie, and told her why. She said "I know NOTHING about that" in a very clipped voice, as if she resented being on the phone with me. But she did say that she would ask Angie to give me a call back. Angie called back a half hour later, and said that as predicted, Baylor had not gotten the kidney, so it was a no go for me. Then she asked why I had asked to speak to a doctor. I told her that I had no idea why Dr. Cooper had called me, since I had called and asked for Angie. Angie blamed it on the answering service. I told Angie what Dr. Cooper had said about knowing nothing about my situation, and told her that the conversation had not given me a warm fuzzy feeling. She defended Dr. Cooper, saying that if the transplant were going forward, that Dr. Cooper would have known everything and would have been able to update me. Oh well, so it goes. I just hope that when the time comes, I don't get the runaround either from the answering service or from whoever calls me back. It will be stressful enough without having that kind of rigamarole to deal with. So it's back to waiting. It's interesting that I had a premonition about a call. I intend to listen to my intuition about this.

First call about kidney availability

On Friday, May 4, we were expecting our "dinners for 8" group for dinner, but when I got home from work I was very tired, so I got into my jammies and lay down for a nap. I slept about an hour, then was awakened by my cell phone, which I now keep with me at all times. It was the transplant coordinator from Baylor All Saints in Ft. Worth, calling to inquire if I were interested in receiving a kidney from a high risk donor. A high risk donor is someone whose lifestyle has put them at risk for HIV/AIDS, sexually transmitted diseases, hepatitis, etc. This generally means donors who have engaged in sex for money, have engaged in gay sex, have been in prison, or done recreational drugs. The coordinator said that a kidney was coming in from Alaska overnight, and going to Houston for a possible recipient there, but if the match didn't work there, the kidney would be available to All Saints. She said further that the donor was a 32 year old woman who had engaged in sex for money within the last two years. The patient had been tested for all the diseases that can be tested for and found to be clean. But of course, she could have been exposed to one of the blood borne diseases within the last few weeks and the disease might not show up on the tests. I turned it down, although she kept telling me that I should really give it some consideration. Before I started the transplant evaluation process, my nephrologist told me that, because of my age, I would be asked to consider accepting what is known as an "extended criteria" kidney, which is a kidney from someone who is older than 50 years, or has had mild hypertension, or diabetes that was controlled, or some other condition that could have affected the kidney's performance. He told me that, because I am in overall good health except for my failing kidney, I should not accept anything other than a "standard criteria" kidney, which is one from a donor younger than 50 years, with no health issues. My first transplant evaluation was at UAMS, and the transplant surgeon there (Dr. Abu-Lezz), said the same thing, for me to accept nothing less than standard criteria kidney. So it was an easy call for me to turn down the "high risk" kidney, which is even worse than an extended criteria kidney, because it carries the additional possibility of bring some disease with it. Still, the call sort of rattled me. I know that there is at least one person (the intended recipient in Houston) who is interested in receiving this kidney. I surmise it must be somebody who has been on dialysis for a long time, or who is so sick that ANY kidney sounds better than none. I wonder how sick I'd have to be to be willing to accept this?