“Three Weeks”—Tim’s Story
My wife and I understood the eventuality that our son would require a kidney transplant. But even that real understanding doesn’t really prepare you for the event. In a lot of ways, it’s a good thing that events went so fast. Testing, travelling, packing, and planning have taken up the better part of six months.
My older son’s kidney function dropped below 20% early this year. Before that time, kidney function was just a number that didn’t get better. At the 20% point, there were obvious changes. It hit me then that the situation was real, and needed to get better. We knew that he wanted to bypass dialysis, if possible.
My wife did a wonderful job calling and cajoling medical and insurance coordinators. I know that her efforts got us results. Before we knew it, the money part of the transplant was approved, and testing could begin. One oddity we had to deal with was that although we knew our own blood types, we didn’t know the blood type of our son that would need the transplant. He has had countless blood samples drawn, but was apparently never typed. We did know that his mother was O+, so we figured that at least she would match. Soon after the match testing in June we found out that my son and I were A+, so we were in good shape blood type wise.
After a fair bit of discussion, it was decided that I would be the donor. My health was great and my work situation was in a good spot to miss the time. Also, if we were going to travel to Dallas for the transplant, it would be much easier for her to be the nurse remotely than it would for me. Our main issue was that if my son would not be able to drive for several weeks, she would need to stay while I went back to South Texas to go back to work.
The pre-transplant testing was certainly thorough. My pre-conceived notion was that the two days would be spent with lots of time in the waiting room, waiting for the next test or doctor discussion. So, I brought lots of reading material to pass the time. That was way off. I was whisked to my first blood draw within minutes of checking in. From then on, it was one test to the next. Often, the nurse was waiting for me to finish so that they could start their test. I had heart-to-heart discussions with a Psychiatrist and a Social Worker. I was examined thoroughly by three doctors over the two days. Two of these would be on my transplant team. It was a very valuable experience to be able to interface and ask questions of these doctors. They answered all questions, and queried for more. I started to think that there were questions they expected, and I wasn’t asking. I do recommend making a list of questions ahead of time to take with you to these exams.
The most interesting tests were the glofil and the CT scan. The glofil starts with drinking a non-radioactive iodine substance mixed in Diet Coke. The Diet Coke doesn’t help the flavor. Then, your first urine sample is taken. This is where being hydrated is an advantage. The specific gravity of this sample determines your initial water-drinking amount. I’ve heard this can be as high as 12 cups! Before the test begins, you are injected with radioactive iodine. Since you’re thyroid is already saturated with your initial cocktail, the radioactive stuff avoids your thyroid. The rest of your three hours consists of drinking the amount of water you’re told to drink, having blood drawn, and peeing on demand. That on demand time will be when you least expect, and it’s hard to be ready. My CT scan consisted of having an IV installed, then lying within a huge spinning wheel. Eventually, the dye was injected into my IV by a gun that looked to be from the set of “Honey, I Shrunk the Kids”.
Methodist Medical Center in Dallas performs kidney removal from the donor by laparoscopic almost exclusively. They perform about 50 kidney transplants per year, and have only performed one open surgery since 1999. It was explained to me that if they started laparoscopic, and something wasn’t quite right, that they might very well continue the surgery open. Either way, I was happy with the center’s transplant experience in general, and laparoscopic in particular.
Finding out I was approved for transplant was an attention-getter. It certainly made the event real. A few days later, the surgery date was set. That started the butterflies. The date just wasn’t that far away. Being a donor was something I desperately wanted to do, however, knowing how many days away the event was caused some anxiety. Now, there was a definite to-do list. Things to do at work, at home, hotel arrangements, etc. If a transplant is done away from home, little things like “how do we pay the bills” and “what will we eat in the hotel” become an issue.
We had good luck settling our “away from home” issues, and left for Dallas two days before surgery. We were asked to arrive at the hospital the day before transplant for pre-op testing. For me, that meant one blood draw. There was more for my son, but that ended up being a short day. Our hospital had hotel rooms available a short walk down the hall from the transplant center. We decided to stay there until both of us were discharged. We checked into that room the afternoon before surgery.
I have a limited recollection of the morning of surgery day. I was asked to show up to Admitting at 5:30 am. They took me to pre-op to get ready. The last bit of modesty I would have for a while was left there, as I changed into the hospital gown, and socks. That would be my outfit for the next 24 hours. My surgeons came to talk to me, and to answer any last minute questions. This was the first time I heard there would be a breathing tube down my throat. My anesthesiologist arrived to “give me something to relax”. Whatever that substance was removed most of my consciousness. I do recall being rolled from that room to the operating room. I do remember the bright lights, and that several people were in the room. I didn’t note what equipment was or wasn’t there. That all I remember until after the surgery.
In the recovery room, I was in some degree of pain. I was asked throughout the hospital stay to quantify my pain on a 1 – 10 scale. In the recovery room, the pain was only about a six. I was definitely foggy and sleepy at that time. The staff in there did report everything was going well with my son’s surgery. I think I got a few updates during my recovery room stay. I spent about an hour and a half in the recovery room. I was then rolled to my hospital room.
I was a little more awake once I reached the hospital room. The first thing I was asked was to “scootch” from the recovery room bed to my hospital bed. The distance I needed to move was daunting. At the time it felt like I’d been asked to run around the hospital. After this maneuver, my pain scale had risen to eight. The staff was kind enough to hook me up to my morphine pump. I’m sure I pushed that button a lot during the first several hours. That kept the pain down, but made me constantly sleepy. Other than the saline and morphine hooked to my IV, I had a catheter attached. That thing didn’t really bother me at the time.
My “openings” consisted of one two-inch incision slightly below the “bikini line” and four rounded holes. The holes were closed with steri-strips. The skin at the incision was closed with some sort of medical super glue, and then with steri-strips. A large strip of clear tape was placed over the top. It was explained to me that the incision was stitched on the inside, and the stitches would dissolve over time.
My wife and youngest son arrived in the room not long after me. They had news that my son’s operation was a complete success. The kidney produced urine “like a garden hose” right after connection. I wasn’t too sleepy to be overjoyed with that news.
I knew there would be pain involved, but some aspects caught me by surprise. The breathing tube made my throat very sore, and had irritated my lips. While this sounds like a small thing on the whole, the effects were around for several days. My incision was certainly painful, but general abdomen pain was the worst issue.
The hospital staff was stellar. Each nurse took the time to ask questions and listen. They were very friendly and professional. Doctors on my transplant team came by to give me a look and ask questions. They usually had some current news on how my son was doing. They related his continually falling creatinine numbers.
I was on liquids only for several hours after the surgery. Initially, I just wanted the ice chips. My wife was kind enough to feed those to me. I soon received some broth, juice, and Jell-O. Over the first several hours in the room, it seemed like I had special Jell-O deliveries. That was the last thing I wanted.
Unfortunately, I couldn’t immediately visit my son. I was on the 10th floor, while my son was on the 4th floor. So, it wasn’t like they could just roll my bed around. The afternoon after surgery, I called him when I knew he was awake. It was so good to hear him in good spirits about having a functioning kidney.
Even after I was allowed solid food, I didn’t have much of an appetite. The food delivered always looked and smelled delicious. It just seemed that after I started eating, the appetite ran out quick.
I slept really well the first night. Nurses always apologized when they came in to check on me. I had lots of blood pressure and temperature reading taken. Although I slept well, the dreams I had were very intense. Not sure what they were about, but I do remember the intensity.
There was much less pain the second day. I made a conscious effort to reduce my morphine usage. I wanted to see my family, be able to walk around, and maybe actually eat. Very early the second day, my catheter was removed. I had heard that feeling described as “unique”. That description didn’t really prepare me for the actual event. Although not truly painful, I would have to go with “exceptionally unique”. A little while later, my IV was removed. I was now unattached to any device. I changed out of the revealing gown to “sleep pants”. These were nice and gentle, and covered everything. I have to give my wife thanks and credit for bringing those. It’s a recommended item. The nurse asked me to get up and walk around, which I was more than happy to do. I was tired of being attached to the hospital bed. Standing up was no problem. My wife walked out with me to the nurse’s station and back. The trip was probably a distance of 30 yards. That short trip did take a lot of energy.
I was ready to see my son. As I’ve noted, he was on the 4th floor, so my nurse wasn’t comfortable with me moving around that much yet on foot. I wasn’t up to walking that far, anyway. She produced a wheelchair, so I hopped on while my wife pushed. I could tell immediately that my son was in much better shape. Although he was still uncomfortable from the surgery, he looked healthier than last I’d seen him. He was very glad to see me, however, he had wanted to be the first to leave his room and visit me.
I returned to the room in time for lunch. Again, I thought I was really hungry. The chicken fried steak brought to me was OK, but after two bites, I was done. I enjoyed about half of a sweet potato pie slice. Any cool liquids helped my still sore throat.
I spent the afternoon moving around a lot more. The first trip to the other end of the floor was very tiring. By late afternoon, the trip was much easier. It did feel good to get up and move around. Several times, I felt like I needed to urinate. The first trip to the bathroom was frustrating – no luck. By mid-afternoon I could produce just a little. I had better luck in the late afternoon.
My main complaint now was general gastrointestinal discomfort. I was taking a few tablets now and then for pain. It seemed odd that earlier I could inject myself with morphine, and now I had to ask the nurse for pain pills. I was asked occasionally if I was “passing gas” yet. I hadn’t much movement in that department.
The Urologist from my transplant team came by about 6:30pm. He looked over my incisions, asked how I felt, and about my urination and gas. He told me that he would release me if I wanted. I replied that I did wish to be released, but I was also a little worried about leaving too soon. Since I would temporarily be in a hotel room within the hospital, I felt good about the release.
A nurse eventually came to the room with the necessary paperwork. She also removed the IV device still attached to my hand. I went with my wife down to the 4th floor to give my son the good news. He was doing even better than before. His evening nurse was just getting ready to take him for his first walk. He was still attached to an IV, so he would get to walk around holding onto that IV stand. I kind of wished I’d been able to do that.
Sleeping in the hotel room the first night was easy enough. I had the same vivid dreams that night that I’d had in the hospital room. I was able to sleep through them, though. Over the next week, though, sleeping became a problem. I could usually get to sleep OK initially, but would end up wide-awake in the middle of the night. The vivid dreams were usually the culprit. I would wake up anxious to the point that electricity seemed to be flowing through my body. Sleeping through the night was a problem through the first two weeks after surgery.
The incisions were a very minor issue. After the first day, the only thing that made the incision sting was coughing. I refused to sneeze until several days after surgery. It stung plenty then.
The absolute greatest problem after the surgery was my digestive system. My entire digestive tract was in one sort of pain or another for most of 2½ weeks. Some days were better than others, but the constant discomfort tended to keep me from doing much. My appetite was almost non-existent. The thought of drinking alcohol was very unappealing. Constipation was a problem the first several days after surgery. My appetite started to return 10 days after surgery. It returned all of a sudden, really. Even then, eating caused some general discomfort. Toward the end of this time period, days were generally good, but there would be problems at some point during the day.
I started light exercise at five days after surgery. I mostly utilized the treadmill at the hotel. 20 minutes of walking really took it out of me at first. At a week and a half, I could do 30 minutes of fast walking followed by a short exercise bike workout.
My follow-up was nine days after surgery. That consisted of giving a urine sample and a look at my incision. The doctor generally asked how I was doing. I related the digestive problems I was having, and he let me know that was pretty normal. He also told me the tightness I felt in my lower abdomen was normal. He said many donors felt there was a rope draped inside their lower abdomen, just below the incision. That was the first I’d heard of that!
I was released to drive a few days before two weeks were up. I asked to drive home on a Sunday, when the traffic would be light. The doctor asked me to be very careful driving. The normal two-week release is based on the condition of the vena cava. The kidney vein is clipped fairly close to this huge return to the heart, and is basically “zippered” close. A car accident could pop this open, if not fully healed. With this knowledge in hand, I carefully drove home.
At the two-week mark, I was feeling pretty good. I still had flashes of the above-mentioned digestive problems. I slept through the night most nights. Doing 30 minutes of chores around the house was enough to tire me out. I could usually rest a while and get to something else. Overall, it was very nice to be relaxing at home.
I returned to work 19 days after surgery. I work in an office environment, so physical exertion wasn’t a problem. However, it did get quite tiring moving around the office, telling the story to co-workers, and catching up on what I’d missed. My managers were very good about my situation. They asked that I do what I could, and go home when I’d had enough. I did go home a little early on the first few days.
I’m now at the three-week mark. Since my son was released to drive yesterday, my wife has returned home. I have no sleeping problems. I have the rare digestive issue. My appetite is fully restored, including the occasional beer. I’ve lost a total of 17 pounds. Two of those pounds have been lost within the last week. Working full days saps my strength more than normal. I would say that I’m at 80%, and still getting a little better each day.
My son is simply doing excellent. His creatinine has lowered to 1.2. His recent glofil was a 105. The transplant clinic staff is very pleased with those numbers. His Prednisone dosage continues to reduce. His planned treatment will eliminate that steroid altogether at the three-month mark.
I am very pleased with how the whole event went. The short-term pain and discomfort I experienced was nothing compared to the pleasure of seeing the cloud of kidney disease lifted from my son. The quality of care from doctors, nurses, and hospital staff was excellent in all cases. I highly recommend and encourage anyone considering donation to do so. My experience was laparoscopic, but I would do it all over again if the surgery were to be open. There’s just so much good that comes from it.