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Karl's Story
"My Kidney Donation Experience at Mayo
Clinic"
Around the first of the year 2000, we received an email from a cousin, or more precisely from her husband. This message informed us of my cousin’s declining health and that she had recently been placed on a waiting list to be a have a kidney transplant at Mayo clinic. Both she and her brother Norman have a congenital kidney condition that has caused major problems for years. When I first read the message I just looked at it as family news, and was a little sad to know that she faced such an ordeal in her future. It didn’t dawn on me at that time that there was anything I could do about it myself. It was when I shared the email with my wife that she made the comment that I might be a possible donor for her transplant. That was the first that I thought about the prospect. The email certainly hadn’t asked for volunteers, but actually stated that she would be placed in the national data bank looking for donor matches primarily from accident victims. I rather quickly volunteered to be screened as a possible donor. Looking back I see that as the grace of God moving me beyond myself. Like most of us I am basically a pretty selfish person, but was able to make that decision with relative ease.
Once I had made the decision to be screened there was no looking back. I contacted my cousin to find out how to go about being screened as a possible donor. I submitter blood samples that were sent overnight to Mayo clinic for matching. We soon knew that I was a good match for both my blood type and tissue type. Before we could pursue other screening procedures for the transplant we were notified that a kidney match from the victim of a massive stroke had been found, and that she had received a transplant. I was at the same time relieved that I wouldn’t have to face surgery, and disappointed that I had not been able to donate a kidney myself.
We learned in February of 2001 that when my cousin returned to Mayo for her one year follow up visit that the transplanted kidney was failing. She was down to around 15% kidney function. No one knew for sure why this kidney was failing, but possible factors were damage to the kidney in during the donor’s stroke, or damage due to the delay of her original surgery. Her doctors at Mayo were again evaluating her as a candidate for a transplant. At that time I again volunteered to complete screening as a possible donor for her. Kidney transplants from a live donor have a much higher success rate than from cadavers because a living organ is taken directly from one person into another with no wait or storage period. A few weeks after communicating with the transplant coordinator at Mayo again, she sent me a message one day with several possible dates for the surgery. I suddenly knew it was real in a sense that I had not prior to then, but God gave me an excitement about the process.
I immediately started arranging the screening tests that could be done here at home. The first was to submit some more blood for testing at Mayo. The next was a 24 hour urine collection to test the function of my kidneys. The more involved tests were a colonoscopy and a prostate ultrasound. These later two involved on different dates purging my digestive system the night before the showing up the next morning for the test. I passed all of these tests with flying colors. The plan then was for me to go to Mayo Clinic in Rochester Minnesota on Tuesday May 29th for final screening with the transplant surgery scheduled for Friday June 1. They told me that there was a high probability that the transplant would take place once we were to that stage.
The process became such an emotional focus for me that soon I just wanted to get it over with. I am sure that not a day went by during that time that I didn’t think about it. I always had perfect peace about it, but my wife didn’t as the time got closer. Interestingly, she is the one who first suggested that I might be a good donor.
During my trip to Rochester I opened wonderful notes of love and encouragement from two of my daughters, each reflecting their unique personality. I arrived in Rochester the evening of Sunday, May 27th, 2001a day early for my check in. The purpose of being there early was so that I could collect another 24 hour urine output to take in with me on Tuesday morning. We thought that it would be easier to collect this in Rochester than during travel, or before travel then packing it. I had Monday the 28th (Memorial Day) by myself in Rochester. I really enjoyed the day, walking all over town getting the lay of the land by myself, all the time with my collection jug hidden away in my bag. That night I dreamed all night long something happened to the urine specimen and I couldn’t deliver it the next morning. I dreamed things like it was spilled or contaminated or I forgot to do it, but I actually delivered the correctly collected specimen the next morning.
Tuesday morning I was there for my first appointment which was to check in at the Nephrology center in the Eisenberg building of Rochester Methodist Hospital at 7:00AM. At that time I was given a 6 page list of appointments and instructions for the next 3 days, as well as a psychological test to be turned in when convenient during the process. I had come in having eaten a low fat meal the night before, then nothing other than a small glass of water in the morning. I went from there to the Infusion Therapy Center in the Charlton Building to have some blood samples taken at 7:10. From there I went to the Plumber Building to have an electrocardiogram taken at 8:00.
After the electrocardiogram I still could not eat until after the next test, but had about an hour and a half to spare. I was instructed to arrive for the next test having drunk 4-6 glasses of water within the last hour. One glass could be substituted with a cup of coffee, breakfast. Things got a little comical at this point. I had about an hour with instructions to tank up. They were not specific about how big these glasses of water should be, so I started with a cup of coffee and a bottle of bottled water. I then refilled the bottle three more times within the hour. I arrived at desk C-1 of the Hilton Building at 9:45 knowing that I was going to need to go soon. I later named this lab the TT unit for obvious reasons. I was there for a renal function test. This involved starting off emptying my bladder which I cheerfully did, then receiving a small iodine injection in one arm. I was then to lie there for an hour when they would come back and have me empty my bladder again and take a blood sample from the other arm, then repeat this all again 45 minutes later. I had drunk so much water that I had to go again at 30 minutes, and was really ready at the hour. The nurse commented at that time that my kidneys appeared to be working very well. For the second portion of the test I was early again. I made use of the time between samples by completing the psychological test. They ended up letting me go about 11:30 with instructions to drink extra water the rest of the day to help clear my system of the iodine.
I spent the entire rest of the day going to the rest room every 30 minutes. I had a short time for lunch and had a gyro and coke at a local food court. I had instructions to go back to the Infusion Therapy Center in the Charlton Building with a full bladder at 12:20, no problem. I donated another urine sample there. My next appointment was at 1:30 back at the Nephrology unit to meet with Dr. Jorg Velosa for a general medical exam. Dr. Velosa is a gracious gentleman originally from Columbia. He started off by telling me that what I was doing was a very noble thing. This really touched me in a way that previous comments had not. I guess the difference was so many people have told me what a wonderful person I am, which I know just isn’t true. He commented not about me as a person, but about what I was doing. He obviously knew the impact that a kidney would be for the recipient as well as the risk and investment on the part of the donor. The result of that exam was that I was found acceptable as a donor pending the outcome of the remaining test results.
I left Dr. Velosa to go to the division of hypertension on the 9th floor of the Mayo Building at 2:30. At this appointment my blood pressure was taken 2 times each lying down, seated and standing. The results were remarkable in that the readings were all high. I think that was the cumulative effect of the day which had been somewhat stressful. They also attached to me a monitor that would take my blood pressure every 10 minutes initial 10 PM then every 20 minutes through the night. They told me to go ahead to my remaining appointments, but if I was moving when the device started inflating I should stop and remain still until the check was over. I left there late for my next appointment on the 10th floor of Methodist Hospital 2 blocks away. Somehow the next 2 readings were also high.
My next appointment was a transplant education class that was held on the hospital unit that transplant patients go to after their surgery. It consisted of a quick overview of the entire process with emphasis on the surgical procedures. I finally had the pleasure of meeting Lynette Fix, the transplant coordinator who led the class. There were only 3 of us in the class. One other donor, Robyn and a friend of hers, Lorie and myself. Robyn, Lorie and I got to know each other during the remaining time at Mayo. We discovered much in common, including our Christian faith and that we were both donating kidneys for a first cousin. We had some very special fellowship for the next few days.
I went from the transplant class to go to the Charlton Building where I was given a chest X-ray. By the time I had finished that I was ready to get back to the hotel and have some rest. I had planned on walking back to the hotel and later going out for a nice meal, but I was so drained by that time, and also had this new attachment (the monitor), that I just rode the shuttle bus back to the hotel and ate dinner in the hotel restaurant. Lynette had given Robin and I each a bottle of laxative to use that night. It seems that we were scheduled for a CT scan in the morning and needed to empty our digestive systems again. I found another variable for blood pressure. The Spacelabs model 90207 displays the blood pressure every time it finishes. I took the laxative that night, and it "kicked in" about 9:15. While I was seated in the facility taking care of business it happened to run. I was fascinated to see that the reading was substantially higher.
Wednesday morning I was to be at the Department of Diagnostic Radiology on the 4th floor of the Mayo Building at 7:00 for my body CT examination, but I first dropped by the Hypertension Department on the 9th floor to leave my BP monitor. The CT scan procedure was relatively quick and painless with the exception of a temporary IV. I left there with time for a quick breakfast down in the patient lounge/cafeteria before going to my next appointment.
At 9:45 I was back at the Division of Hypertension for a meeting with Nancy Driscoll, another delightful person. Her office was so peaceful and she was a joy to meet. She showed me the results of my BP monitor from the night before, and we both laughed at the laxative "spikes" on the graph. She then repeated the previous day’s blood pressures with electrodes attached to determine something that I didn’t really understand. Apparently I passed that to, because she told me that she was giving me the go ahead as far as she was concerned.
At 11:00 I met with Claire Casselman a social worker in the Transplant Center in the Charlton Building. She was to evaluate my mental health in regard to the transplant and generally confirm that I’m not crazy. She is a really nice person with whom I had a very good discussion about what was going on inside me right then. I think the session helped me look at myself again as well as helping them evaluate me. I left Claire to go down the hall to meet Dr. Prieto who would be my surgeon. Dr. Prietro developed the donor surgical procedure that they use at Mayo. It's called a "hand assist laparoscopic technique" The surgery is mostly laparoscopic but the surgeon inserts his hand into the hole to assist the laparoscopic devices. They do 90% of all laparoscopic kidney donations here. From what I hear, laparoscopic is the way to go for the donation, rather than the old "full opening" technique. Dr. Prieto showed me the CT scan images of my kidneys on the computer, now that was a weird experience and was the one time during this that I felt sick at my stomach.
I got away from the transplant center about 1:00 and went to lunch then walked back to the hotel. I kept an eye out for my cousin since she was due in that afternoon, and was able to meet her in the hotel lobby right after arrival. That night we were able to have a really good talk about the transplant. She and I had both completely given this over to God and were trusting him for his best for us. It surprised me to hear Helene use the same words that I had used in prayer just a few hours before, that she saw herself as being along for the ride, just waiting to see what God was going to do. We went out to dinner with a real unity of spirit and love for each other. We both were much more concerned for the other than for ourselves. That night one of my daughters emailed me about having seen a video of the laparoscopic kidney donation surgery on the internet and how exciting it was for her to watch it. She was in the final stages of packing to leave for Guatemala on Saturday.
Thursday morning my cousin and I both started out again at 7:00 at the Infusion Therapy Center for more blood samples. After I gave my blood samples again I went to breakfast, then met with Lynette the transplant coordinator at 10:00 where she gave me yet another laxative to take that night in preparation for the surgery. I then met the surgeon again for a final consultation prior to the surgery. He wanted to make sure I had all my questions answered.
After lunch my path and my cousin’s crossed again in the waiting room of the Division of Nephrology. We were both waiting to see our Nephrologists. At this meeting with Dr. Velosa I was finally told that we had a green light for Friday morning. We were scheduled to be the second transplant of the day. Again he was a very kind and gracious person. I was over whelmed by the quality of attention and compassion that were being shown to me.
My wife arrived that afternoon around 4:00, and I was able to be there to meet the airport shuttle coming in. She had enjoyed flying the last two legs of the journey with my cousin’s daughter who was coming from Williamsburg. As soon as she arrived I swept her off to Mayo to meet Lynette. Lynette was able to answer her questions about the surgery and calm her fears considerably. I was also able to give her a quick tour of the Mayo Clinic area as well as the hospital unit that would be home for a couple of days. We walked back to the hotel and unpacked, then went back downtown for a quiet dinner. That night my married daughter and her husband arrived from Ohio.
The next morning before going in for my 9:00 check in at the hospital I received a phone call from my dear friend and pastor Ken Wilson. Ken and I prayed over the phone in what he called a pre launch prayer. I really appreciated his call as well as all the calls and emails that were sent while I was there. It was always a high point to hear from someone at home. My cousin, her husband and daughter, my wife, daughter and son in law and I all rode to the hospital together on the shuttle bus. My cousin and her group went one way and I went another with my entourage. I was checked in and given a last cursory physical. I had to state my name, birthdate and procedure over and over that morning as I encountered new people. This was a procedure where everyone doing anything to me would make sure I was indeed Karl Poythress who was a donor for a live kidney transplant. Again everyone I encountered went out of their way to show me true concern. This included the nurses, the aid who prepped me for surgery and the OR team. While I waited to go into the OR I was lying there thinking over the whole thing with tears in my eyes hoping no one would think I wanted out, because I didn’t. It was just a very emotional experience for me.
The first thing I remember after the surgery is being taken down the hall toward the transplant unit on the 10th floor of Methodist Hospital around 4:00. The guy wheeling me along told me when we were passing the family waiting room so I lifted my head and waved. This was apparently quite comical for those in the waiting room. I was pretty doped up the rest of the day and don’t remember much. I do remember that I had more tubes attached to me than I had expected. My one meal of the day was a popsicle late that evening.
That night my blood pressure went very low for several hours causing some concern, but it was back up in the morning. The concern was that I might be hemorrhaging but that was not happening. I was later told that I was experiencing a form of shock. In spite of this, in the morning after my catheter and one IV were removed I had a shower and was able to go down the hall to visit my cousin. I was overwhelmed upon entering her room to see a face that had lost years of age and had changed color completely. It was obvious from looking at her that her new kidney was doing its work, and just as obvious to her from how she felt that it was working. I was encouraged to have my surgeon tell me that morning that my cousin now has a better kidney than his own. I also visited Linda, my new friend who had received Robyn’s kidney. She was also doing very well, but Robyn was having a little harder time getting going than I was.
During the remainder of my hospital stay my cousin and I made visits back and forth but these were harder for her because she had so many more extraneous attachments than I did. I had the strange experience of sitting there in bed in my hospital room suddenly becoming aware of a physical sense that something was missing from my body. I never expected to actually feel that an internal organ was gone, but I could actually feel it. I asked Robyn and she had also had a similar experience. During my stay in the hospital I was so impressed with the care and compassion of the nursing staff, and also impressed with the amount of work they had caring for the transplant recipients, particularly the liver transplant patients.
I was released with little fanfare early Sunday afternoon. I left the unit on my own feet to go down the elevator and ride the hotel shuttle back to the hotel. I had walked in, even walked down to surgery, then walked out on my own without the usual hospital wheelchair. Sunday night my wife and I ate delicious hamburgers in the hotel bar since the restaurant was closed Sunday night.
The next morning, Monday, I went back to the TT unit for a follow up renal function test. This time I prepared with a little less water than the first time but was still able to give plenty. The test was not a big success because my slightly enlarged prostate gland had been somewhat traumatized and was not allowing me to completely empty my bladder. The nurses administering the test talked like they wanted to catheterize me to complete the test. They called Dr. Velosa, and bless him, he told them he did not want that done. They were able to complete a less accurate test with the blood sample they had taken, and found my kidney function to be acceptable. Later that day I had a closing consultation with Dr. Gloor in the Transplant Center, and was released as a patient.
We stayed in Rochester until Thursday when we returned home to Birmingham. Tuesday and Wednesday were slow quiet days spent in the hotel room for the most part. We did walk some in the evening either to or from our evening meal, but I soon found that long walks tended to aggravate the area of my surgery. I was healing well but still had some discomfort and swelling for a while. It surprised me that I was limited in my selection of cloths for close to two weeks. Because of the swelling in the area of my big incision I could only wear pants that would usually fit loosely. I had lost some weight intentionally in the year prior to the surgery and fortunately had some of my fatter cloths available.
I returned to work on Monday June 11th and had a really bad day. We had been up the night before till around 2:00 AM because of Susie’s late return from her mission trip. The combination of less sleep, the return to work and the usual post surgery emotional slump combined to make Monday a really bad day. The rest of the week the days got better. I found that I needed at least 10 hours sleep each night and made that a priority. As I write this 21 days after the surgery I am now doing much better and am much closer to full recovery. I have a 3 ½ inch vertical incision going down from my belly button and two much smaller holes in my side below the rib cage. These were all stitched up with dissolving suture topped with steri strips and have healed nicely. I had one other very small hole in my side that only required a bandaid and was healed within a few days. The 3 smaller openings were for the optical device, the remote control device and the tube used for gas to temporarily inflate my abdomen during surgery. One big negative factor related to the donation that I have experienced was a predictable one. I was told during the screening process to not be surprised to have feelings of depression after the surgery. I have experienced this occasionally. I have found the best way for me to cope with this is extra sleep. It seems to come when I have pushed myself too much. When it’s there depression is no fun, but I have found it to be fairly short lived.
My cousin has done wonderfully after the transplant. She has gone in for checks on Monday, Wednesday and Friday since being released from the hospital and continues to test very well. They expect to release her a week early just after the three week anniversary of the surgery. Dr. Gloor told me at my final consultation that what I had done in donating a kidney had impacted the life of not only my cousin but also her family in a quite significant way. I am seeing more and more how significant that impact is and am very thankful to God for using me as a part of his healing grace for Her. The discomfort that I experienced is small compared to the positive impact in my cousins life. All in all I think that kidney donation has been one of the most enriching experiences of my life.
