It was an exciting 30 minute drive to Fort Worth. The surgeon had called me while I was on dialysis and said we had made the correct decision to accept the kidney. It was a terrific match and the big news was I was the primary recipient. He would visit more with me later in the day when we were checked in. We travelled light. We were told not to bring personal belongings as I would be changing rooms several times. We checked in through the emergency room, they were ready for us and it went quickly. I noticed another patient checking in for a kidney transplant and it was poignant moment. If the day went as planned, I would be receiving a kidney and she would be going home disappointed.
It was a busy day, as I was taken for X-rays and met with the anesthesiologist, the doctors would be doing followup, doctors who would be designing my cocktail of immuno-suppressants and assorted medications, the chaplain, the social workers and who knows else, all the while talking and texting about the news to family and friends.
Towards the end of the afternoon we met with the surgeon who explained the current situation. Evidently arrangements were still being made as to other recipients of organs from the donor. The donor's body was being kept alive on machines and when everybody was ready, the organs would be removed and transported to the recipients for immediate transplantation. The goal is to minimize the time the organs are not connected to living tissue. At this late point in the day, we were still several hours aways from surgery. He recommended getting started early the next morning so everyone would be fresh and rested. Who was I to disagree with that! So we spent the night in the hospital. The sofa converted into a bed, so Susan was able to sleep in relative comfort and would not have to drive to Dallas and back.
Early surgery was set for Tuesday, October 28.
Wednesday, October 28, 2009
Tuesday, October 27, 2009
Receiving the Call
So, there I stood, October 27, 2008. At 3 am. In the middle of the bedroom with a telephone to my ear, shaking Susan violently to wake her up, trying to hear and understand what Bettina was saying, and now trying to tell Susan what was going on and talk to Bettina. All at the same time. It was quite confusing. And exciting.
So the gist was this. She was making the offer of a kidney, BUT it was considered a high-risk kidney. She would give us a few minutes to make a decision.
WHAT??? Is this a reality show???
The risk involved the life history of the donor. He had gone through a period of IV drug use, but the family said he had been sober for the last four years. During that time he had married and had a young son. The blood was clean and there was no evidence of HIV, hepatitis or any other blood born pathogens. We were not the first to be offered the kidney. Bettina did tell me that I was an excellent match and that she would call back in a few minutes.
Now, Susan and I had a quick, life-or-death conversation, putting quite a strain on our not-yet-awake brains. Our initial instinct was to take the kidney. We were not biased by the history of drug use, but my concern was the reliability of testing for blood born pathogens. So, off to the internet!
Initial Google searches produced a lot of generalized numbers and professional sites where you pay for access to hard data, but real numbers meaningful to real folk like us were hard to find. So we turned to the ultimate source of reliable data for the masses, Wikipedia. Here were numbers, lots of numbers, all footnoted to various medical journals, and easy to read. Best of all, the numbers showed that medical science seems to have blood testing down, well, to a science. At least as far as HIV, hepatitis and worrisome pathogens were concerned. Performance enhancing cocktails for athletes is another story.
We looked at one another and hugged. Our decision was made. But I cautioned Susan that the deal was not closed. There would be many more blood checks and matching tests before transplantation could occur. Several possible matches are brought in for every organ and the kidney goes to the best match. During the course of dialysis I had seen a number of patients be called in for a transplant only to come back to dialysis after the kidney went to a someone else.
It seemed like hours before Bettina called back. It was difficult to keep emotions in check as I told her we would accept. She seemed to be as excited as we were.
Time for logistics. I was scheduled to be at dialysis at 5 am, which was great timing as my blood would be cleaned prior to surgery which they hoped would happen late that afternoon. But first I had to go to Baylor Dallas for blood draws. Then I would go to dialysis and then we would drive straight to Baylor All Saints in Fort Worth late in the morning.
Time for a little technical transplant talk. UNOS (the national organ-sharing bank, check them out) divides the nation into regions around transplant centers. When organs become available they look first at that region. If a suitable match is not found, the search area expands. Each center and region has a list and patients can be listed on more than one list. The catch is that you have to be able to get to the transplant center quickly and remain in that area for 6-8 weeks after transplant for monitoring. Dallas and Fort Worth are centers of two different regions and Baylor Transplant Services administers programs in both cities. It was easy for me to be on both lists.
Now it was a mad dash to throw on some clothes and head to the hospital, which is about 10 minutes from the house. Once there it took 20 minutes to find the right lab. We finally found life in maternity where a kind nurse took us right down the hall to the lab. They quickly drew many vials of blood and we headed to dialysis. I had called and told them why I was going to be late. After many hugs I was rushed into the center and hooked onto my machine for the last time.
So the gist was this. She was making the offer of a kidney, BUT it was considered a high-risk kidney. She would give us a few minutes to make a decision.
WHAT??? Is this a reality show???
The risk involved the life history of the donor. He had gone through a period of IV drug use, but the family said he had been sober for the last four years. During that time he had married and had a young son. The blood was clean and there was no evidence of HIV, hepatitis or any other blood born pathogens. We were not the first to be offered the kidney. Bettina did tell me that I was an excellent match and that she would call back in a few minutes.
Now, Susan and I had a quick, life-or-death conversation, putting quite a strain on our not-yet-awake brains. Our initial instinct was to take the kidney. We were not biased by the history of drug use, but my concern was the reliability of testing for blood born pathogens. So, off to the internet!
Initial Google searches produced a lot of generalized numbers and professional sites where you pay for access to hard data, but real numbers meaningful to real folk like us were hard to find. So we turned to the ultimate source of reliable data for the masses, Wikipedia. Here were numbers, lots of numbers, all footnoted to various medical journals, and easy to read. Best of all, the numbers showed that medical science seems to have blood testing down, well, to a science. At least as far as HIV, hepatitis and worrisome pathogens were concerned. Performance enhancing cocktails for athletes is another story.
We looked at one another and hugged. Our decision was made. But I cautioned Susan that the deal was not closed. There would be many more blood checks and matching tests before transplantation could occur. Several possible matches are brought in for every organ and the kidney goes to the best match. During the course of dialysis I had seen a number of patients be called in for a transplant only to come back to dialysis after the kidney went to a someone else.
It seemed like hours before Bettina called back. It was difficult to keep emotions in check as I told her we would accept. She seemed to be as excited as we were.
Time for logistics. I was scheduled to be at dialysis at 5 am, which was great timing as my blood would be cleaned prior to surgery which they hoped would happen late that afternoon. But first I had to go to Baylor Dallas for blood draws. Then I would go to dialysis and then we would drive straight to Baylor All Saints in Fort Worth late in the morning.
Time for a little technical transplant talk. UNOS (the national organ-sharing bank, check them out) divides the nation into regions around transplant centers. When organs become available they look first at that region. If a suitable match is not found, the search area expands. Each center and region has a list and patients can be listed on more than one list. The catch is that you have to be able to get to the transplant center quickly and remain in that area for 6-8 weeks after transplant for monitoring. Dallas and Fort Worth are centers of two different regions and Baylor Transplant Services administers programs in both cities. It was easy for me to be on both lists.
Now it was a mad dash to throw on some clothes and head to the hospital, which is about 10 minutes from the house. Once there it took 20 minutes to find the right lab. We finally found life in maternity where a kind nurse took us right down the hall to the lab. They quickly drew many vials of blood and we headed to dialysis. I had called and told them why I was going to be late. After many hugs I was rushed into the center and hooked onto my machine for the last time.
Monday, October 26, 2009
A New Day
It was a long glorious October weekend with cool sunny days and blue skies, but filled with death and sadness.
Sunday night (or Monday morning - I have always maintained that it's night until either you wake up or the sun comes up - whichever happens first!) I woke up to hear the telephone ringing. Damn, it was 3 am! At that time of day it's either bad news or a wrong number. Since I was awake, I got up and stumbled through the house looking for the cordless phone. Of course the phone stopped ringing right before I found it, so I took it back to the bedroom. Before I got there it rang again. It was 3:18 am.
"Hello, is this David Waddington?"
"Yes it is."
"Hi, I'm Bettina Goin with Baylor All-Saints Transplant in Fort Worth. I have a kidney offer for you...."
Sunday night (or Monday morning - I have always maintained that it's night until either you wake up or the sun comes up - whichever happens first!) I woke up to hear the telephone ringing. Damn, it was 3 am! At that time of day it's either bad news or a wrong number. Since I was awake, I got up and stumbled through the house looking for the cordless phone. Of course the phone stopped ringing right before I found it, so I took it back to the bedroom. Before I got there it rang again. It was 3:18 am.
"Hello, is this David Waddington?"
"Yes it is."
"Hi, I'm Bettina Goin with Baylor All-Saints Transplant in Fort Worth. I have a kidney offer for you...."
Sunday, October 25, 2009
In Memoriam
As detailed in the last post, October 2008 was turning into a month of deep emotional reactions to my experience with kidney failure and dialysis. It was about to get deeper.
I think it was Monday the thirteenth that I came into work after dialysis. One of the managers was due back after a week of vacation, I was greeted with the news of his unexpected death. Charles was a few years younger than I was, but he had died alone in his apartment from a massive heart attack. While Charles did not live a retiring lifestyle, the news came as a great shock, he was not a man who was used to backing down to much of anything. A few days later we received news of the unexpected death of a former colleague who had long been a fixture on the local wine scene. Mike was 56 when he died, the same age I had been when I started dialysis.
Both men were mourned at gatherings of friends and colleagues. Many bottles of wine were shared with tales and memories. The service for Mike was on Saturday, October 25. The following day, some of us from the store gathered Sunday afternoon with Charles' family and friends for a meal and a time together to celebrate and remember. The month had started with deep reflections and the realization that I was living on borrowed time. The death of two friends drove the point into my heart.
I think it was Monday the thirteenth that I came into work after dialysis. One of the managers was due back after a week of vacation, I was greeted with the news of his unexpected death. Charles was a few years younger than I was, but he had died alone in his apartment from a massive heart attack. While Charles did not live a retiring lifestyle, the news came as a great shock, he was not a man who was used to backing down to much of anything. A few days later we received news of the unexpected death of a former colleague who had long been a fixture on the local wine scene. Mike was 56 when he died, the same age I had been when I started dialysis.
Both men were mourned at gatherings of friends and colleagues. Many bottles of wine were shared with tales and memories. The service for Mike was on Saturday, October 25. The following day, some of us from the store gathered Sunday afternoon with Charles' family and friends for a meal and a time together to celebrate and remember. The month had started with deep reflections and the realization that I was living on borrowed time. The death of two friends drove the point into my heart.
Saturday, October 24, 2009
Jump to October, 2008
Please forgive this two year jump in the timeline. Obviously dialysis was successful and there are more bumps of learning and adjustment to cover in the story. But by October, 2008, I had totally adjusted to life on dialysis. I was feeling so much better and more alive than I had been in the preceding years of trying to ignore Stage V Renal Failure. The improvement was dramatic.
October has always been a momentous month in my life. Both in Atlanta and in Dallas, it is when the heat finally abates, the weather shifts and summer is really over for another year. Days are either cool, rainy and meditative or sunny and glorious, with blue skies and brisk northern winds. The first of the month sees my birthday and in Dallas we get the great State Fair of Texas.
It was after my birthday last year that I fully realized what had happened when I started dialysis. The time that had been allocated to my life by my incurable Polycystic Kidney Disease had been 56 years. According to the doctors, it was doubtful I would have seen New Year's Day, 2007. Without the miracle of technology, Susan would have been a widow and my sons without a father.
I began to have a glimmer of the blessings I had received.
October has always been a momentous month in my life. Both in Atlanta and in Dallas, it is when the heat finally abates, the weather shifts and summer is really over for another year. Days are either cool, rainy and meditative or sunny and glorious, with blue skies and brisk northern winds. The first of the month sees my birthday and in Dallas we get the great State Fair of Texas.
It was after my birthday last year that I fully realized what had happened when I started dialysis. The time that had been allocated to my life by my incurable Polycystic Kidney Disease had been 56 years. According to the doctors, it was doubtful I would have seen New Year's Day, 2007. Without the miracle of technology, Susan would have been a widow and my sons without a father.
I began to have a glimmer of the blessings I had received.
Tuesday, October 20, 2009
Life Begins With a Needle
Monday, November 6 2006 was a clear fall morning, cool crisp air, pale blue skies with wispy clouds as Susan dropped me off at the hospital on her way to school. It was very casual, she might have been dropping me off at the store. It was my third hospital admission of the year. The first was through the ER, the second she dropped me off for day surgery to create my fistula. Today the fistula was going to be tapped for dialysis.
We have developed a ritual whenever I go into the hospital. She gave me a flat gold chain right before we were married. The only time I am without it is when I am hospitalized. She takes the chain from my neck and puts it around hers for safekeeping. And it keeps me with her.
Check in was smooth and I soon found myself in my room. The TV was terrible, but I had brought several books and occupied my time reading, napping. Doing tai-chi helped as well. Soon the nurse came in and shaved my arm and eventually took me to the dialysis lab. I had done some research and had a general understanding of what was going to happen and had enough knowledge to make me the dread the process.
However I was not prepared for the size of the needles, and they would start with small ones! Apparently my veins run deep in my arms. For years I had been flattered by nurses who were relieved to encounter 'an easy stick' when it came to drawing blood or installing an IV. But the fistula was small and deep. It only took a few sticks to hit the fistula... the first time.
And then, there I was: hooked up to a machine. It's a powerful moment. I was no longer an independent being. I was totally dependent on advanced modern technology to stay alive.
Friday, October 16, 2009
A Bleak Fall
Fall 2006 started dark when I was turned down for transplant because I was too heavy. Reality was beginning to crash into my stubborn will. Losing 15 pounds seemed impossible. I was already eating minimal meals and was trying my best to at least not gain more weight. Exercise was out of the question. Just getting through a day's work took maximum effort. I was always exhausted. Driving home without falling asleep in traffic or at red lights was a struggle. My days off work were just spent resting. I knew that dialysis was inevitable, but I continued to reject the notion and kept living my life with grim determination and a smile on my face.
I should add at this point that I was not in complete denial. In the spring I had seen the vascular surgeon and had surgery to make a fistula in my left arm. The procedure involves selecting a large artery that takes about 50% of the blood that goes into the hand and connecting it directly to a large vein, creating a super-highway to carry the large amount of blood at the high volume required for hemo-dialysis. As blood flows through, the vessel grows larger. It takes about 4-6 months before the fistula is large enough to be used for dialysis. If emergency dialysis is required, a surgeon installs a port in the upper chest with tubes that connect to the dialysis machine. In my typical style, I had the surgery on my day off, was discharged about 10:30 pm, and was at work the following morning!
I was seeing my nephrologist and receiving Procrit injections and IV Iron infusions every two weeks. The treatments certainly kept me going. I continued to work full-time and sing in the choir at church which meant both weekly rehearsals and several hours every Sunday. Not to mention the occasional work related wine tastings and wine dinners and the occasional bottle of wine (professional obligations, don't ya' know!) I don't remember going to the State Fair that year. I'm sure we did go, but not for long. Just a brief walk-around for a look at the Horned Toads (hand-painted cast replicas, check this guy out!), and a corny dog and a cold beer. It was a struggle through all those years. I can even remember waiting for Susan to get the car and come pick me up. Those who know us will realize the extremity of the situation.
Finally, at the end of October, I went in for an appointment. After waiting for the lab results, Dr. Rinner looked me in the eye and told me that while I had fought a valiant and courageous fight, I was not going to make it through the holidays without a trip to the emergency room with Acute Kidney Failure.
Arrangements were made to enter the hospital the next Monday to begin dialysis. It was the first Monday of November, 2006.
I should add at this point that I was not in complete denial. In the spring I had seen the vascular surgeon and had surgery to make a fistula in my left arm. The procedure involves selecting a large artery that takes about 50% of the blood that goes into the hand and connecting it directly to a large vein, creating a super-highway to carry the large amount of blood at the high volume required for hemo-dialysis. As blood flows through, the vessel grows larger. It takes about 4-6 months before the fistula is large enough to be used for dialysis. If emergency dialysis is required, a surgeon installs a port in the upper chest with tubes that connect to the dialysis machine. In my typical style, I had the surgery on my day off, was discharged about 10:30 pm, and was at work the following morning!
I was seeing my nephrologist and receiving Procrit injections and IV Iron infusions every two weeks. The treatments certainly kept me going. I continued to work full-time and sing in the choir at church which meant both weekly rehearsals and several hours every Sunday. Not to mention the occasional work related wine tastings and wine dinners and the occasional bottle of wine (professional obligations, don't ya' know!) I don't remember going to the State Fair that year. I'm sure we did go, but not for long. Just a brief walk-around for a look at the Horned Toads (hand-painted cast replicas, check this guy out!), and a corny dog and a cold beer. It was a struggle through all those years. I can even remember waiting for Susan to get the car and come pick me up. Those who know us will realize the extremity of the situation.
Finally, at the end of October, I went in for an appointment. After waiting for the lab results, Dr. Rinner looked me in the eye and told me that while I had fought a valiant and courageous fight, I was not going to make it through the holidays without a trip to the emergency room with Acute Kidney Failure.
Arrangements were made to enter the hospital the next Monday to begin dialysis. It was the first Monday of November, 2006.
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