KIDNEY FAILURE - A PERSONAL JOURNAL

[Peter Langley]

It’s March again………

Here I sit. One year ago I had decided to donate a kidney to a friend, and six months ago to the day I was in surgery. We were not related, but I had heard six months earlier that he needed a kidney transplant. I called him, 1,500 miles away, and asked if he would like for me to test to be a donor, in so many words. To be honest, I never figured we would be so compatible. As surprised as I was, I tried to get my advocate to rush the whole thing so as not to miss my favorite season in Maine: fall. Even to this day I can’t figure out why it took six months for everything to happen, but you donors need to know that this squeaky wheel stuff works. I waited two months after the first tests to find out if we were a match. I finally called and asked my advocate “What is going on? What is taking so long? Is this even going to happen at all?” The advocate told me that she wanted to leave me alone with my decision for a while so I could think about it and be sure that it was what I wanted. I was so mad at her for wasting so much of my time and Pete’s. At this point, the advocate wanted to focus on my “anger issues”. I made myself calm down so the testing would continue, and we could set a date. I still feel that too much of Pete’s time was wasted, so keep on that phone!

Now I had one lucky break in this. I had a sister-in-law, Veronica, who had donated a kidney to her mother just two months before I learned of Pete’s problem. At the time, I couldn’t believe she was doing it, but knew I was proud of her. By the end of our visit, she had made it sound not too horrendous -just kind. Veronica’s experience was why I offered my kidney so easily. I wasn’t afraid because she set my mind at ease. And I gave it to God. Actually I made a deal with him, if that’s permitted. If it was my time to go, then God had to allow me to come back as a guardian angel with the power to punish bad people. Yup, to get the people who hurt kids, animals, and old people. I felt that seemed fair. That kept me strong.

By now I knew I needed three months to recuperate after surgery. I called the advocate to try to get a date ASAP. I made it clear that if this surgery didn’t happen by September, then it would have to wait till after the millennium rang in. Ann, the advocate, finally gave us a date. September 14th if all of our tests were acceptable.

So, needless to say, I played all summer long. I didn’t redecorate my newly bought house or even put up any preserves. All I did was enjoy what I felt could have been my last days on earth. By this time May had come, and Veronica’s surgery was done. She was a peach, telling me all about the operation now that it was over and successful. Veronica and I had the same operation, called Laproscopic. Our incisions are different, though. Veronica had a four-inch horizontal bikini cut incision, with four more small incisions as viewing windows. My incision was about four inches vertically in the mid-front of my waist, with two scope sights, each about one inch long. One in my naval and the other about three inches to the left of my naval. Now, up to this point I had checked the library and book stores, and finally the internet for information for living donors, with little luck. I even had Pete and the advocate, Ann, looking for living donor information, but there was very little out there for me. Not even the transplant coordinator here in Maine could find anything. Veronica was my best bet for any information on living kidney donating.

As the surgery drew closer, I decided to make a will, as well as a living will, just in case. I was so busy playing that summer, I put it off till the very end, and Pete drew them up for me the week before surgery. The final signing and notarizing of all the papers was done the very night before surgery. After all, he is not just a friend, he had been my legal guardian angel in the past, too. See Pete, I guess things do come back to you ten fold!

Let me tell you about Veronica’s surgery. One night her Mother was rushed to the hospital, drowning in her own fluids. She couldn’t get a breath, and that‘s when the doctors realized her kidneys had shut down. It was at that time they had discovered she had a disease called Vascalitis, or Wagners Disease. They felt it had fallen into remission, so she was considered a candidate for a kidney transplant. Veronica researched Wagners Disease. This disease can attack the heart, lungs, liver or kidneys, and is usually fatal. Veronica felt blessed. It could have been an irreplaceable organ, but the kidney was what was attacked. Her Mother was put on dialysis and on the list for possible kidney donor. She was only 56 years old, strong and healthy. Dialysis was going well for her, and the doctors started to test her three children for donating. Veronica’s brother was the first tested, but could not donate because he has what is called “Lazy Kidney” (only one of the two works well). Veronica was tested next and was found to be a match. She talked it over with her husband, Andy, who gave Veronica the support she needed. Andy had, at that time, taken over on the research .

Veronica lived in Vermont and her Mother in Connecticut, so when the time came, Veronica and her family went to the hospital down in Connecticut. In the pre-op room, Veronica received a shot to relax her, and all she remembers is saying to her Mother, “Hey see ya in a bit”. Ten hours later Veronica woke up in recovery. Unlike my care, Veronica just barely got out the words, ”I feel nauseous” when the nurse came in and gave her a shot through her I V and that problem was solved immediately. She fell back to sleep and remembers Andy coming in and asking how she was. Veronica said, “I have to sleep, how’s Mom?” Next, she woke up in her room and slept through the trip up. She did however, continue to have a nausea problem which the nurses stayed on top of. Veronica never got sick all the way. She looks back at how helpful her nurses and nurse’s aids were. She felt her mother’s care was not as good as her own. Veronica’s mother remained in recovery two more days. She was then taken to intensive care, because there were no empty beds. She finally made it to a room, but because of a virus they both caught, her mother was in for fifteen days.

The surgery went pretty easy for both of them, but the virus made both very sick. Lots of nausea. By the second day the nurse had Veronica up walking and getting her strength back. For Veronica, the actual procedure was a piece of cake. She only used pain medicine while in the hospital. As soon as she went home she switched to Tylenol. In fact, the whole family went to a carnival that next weekend. It was only the nausea due to the virus that was a problem for her. Veronica slept a lot for the next six weeks. She would drink a lot of caffeine to help stay awake. But by eight weeks she was about 95% back to normal life.

Veronica feels the more information you can get, the better. Andy and Veronica also strongly feel that you need to become a person to your doctors, and your doctors should be people to you. Make it personal. Both Veronica and I feel you should have all your tests, if possible, done in the hospital where the surgery is being done.

Before I was sure I was completely compatible with Pete as a donor, I had to go through many tests. Some routine, and some not so routine. I called my advocate to set up all of my tests down in Florida for May. I was going south to take my mother to see her brother in Georgia any way, so we combined the tasks. After our stop in Georgia, we got to Florida and went for all my tests. It was an easy, well-planned day. They took lots of blood, x-rays, sonograms, and an EKG, then sent me on my way with an empty gallon jug to fill with24 hours worth of urine. All of this confirmed that I was perfect for Pete. The only test they didn’t do was the psychological test, but that was done in Maine before my trip. Veronica warned me not to kid around with that test. For example, they would ask if I was doing it for money. So I heeded her advice, and took the testing seriously. I knew I didn’t want this to fall apart because a bad joke. The Maine Transplant Department gave all kinds of literature on kidney transplants to me, but every thing was for the recipient, and not the donor. So, aside from the verbal information from my advocate, I left with no literature on being a living donor. When I read what Pete would have to go through, like forever, I left feeling thankful that I was the donor and not the recipient. But before I left that clinic, the doctor did talk further about this new Laproscopic technique verses the old procedure, and how much faster both would heal compared to the old method.

Finally, summer was over for me in Maine and I had to go to Florida. The day before surgery, I had to go to the hospital for a few final tests, just to be sure there were no changes that affect the previous tests done in May. Even up to the last minute, the whole thing could stop. These tests were done on a Sunday as outpatient procedures, due to insurance purposes. I was there all day, from 4:30 a.m., with my mother and husband, Mike. We were all exhausted when we were finally through at 5:00 p.m. Then we all went to Pete’s room, as he had been checked into the hospital since morning. He seemed pretty comfortable. He finished my will right there in the hospital, and had it notarized. Then Mike, Mom, and I left for some dinner. I had to hurry home to take this medicine to clean out my bowels for the next day, so I knew I would be up all night with that. The problem with all this was we all had to get up at 4:00 a.m. again the next morning to get to the hospital on time for surgery. I was so exasperated with this situation of not staying in the hospital the day before for all the final tests. If I had had a room my family could have rested while I was being taken to all the different areas for my tests. Mike and Mom were absolutely exhausted, and had to do it all the next day while I had surgery. So try to talk your doctor into your staying the day before, then he can sway the insurance company. I feel the recuperation process after major surgery is better if you’re not totally exhausted before.

Now I went in Monday, Sept. 14th with Mike and my Mom for moral support. This is a huge hospital and there were probably ten other patients for surgery that morning. We were assembled and lead up to the pre-op area for IV’s, etc. After changing into my johnny, the nurse put in my IV. It was in wrong, and she had to take it out. She tried a second time in a different location, and put it in wrong again. By now I asked for a different nurse. Don’t be afraid to stop things that do not feel are right. Most nurses can do things even better then some doctors. If they hurt you, STOP them. A little while went by, and when the surgical team came up to bring me over to surgery, they were mad that I wasn’t ready. They, at that point, whisked me off, saying they would do it themselves in the OR. And doing so, I barely got to say bye to Mike and Mom and be wished luck. Once in the OR, I got picked one more time, and fell quickly to sleep.

Six hours had passed while my mother and Mike waited with no information from a nurse, doctor, or even the advocate. They were very concerned, and didn’t know who they should talk with to get information on how I was doing. The doctor had said the day before, 3-4 hours was normal time for this procedure. So my advice to you is tell who ever goes to the hospital with you not to sit idly by, but to be bold and ask how you are doing! Finally the doctor did call just after the sixth hour passed. He never saw my husband, but did it all by phone. So Mike never met the doctor. The doctor told Mike I was fine and in recovery, and would be there for a while before I would be sent to my room, and he would have to wait for me there.

About 7:30 p.m. (approx. 12 hours since I saw my mother and Mike), I was put in my room. When I saw them, I could finally say I was hurting very very much. Mike grabbed a nurse and told her to help me with some pain killers. I couldn’t talk in the recovery room. The anesthesia had me completely comatose. I could hear, but couldn’t move or talk. I could hear all this commotion going on in the recovery unit, there was a mentally challenged person next to me who had surgery. No one would help me with my pain. I was quiet, so the nurses basically left me alone-to fend for my self. If one relative could have peeked into the recovery unit, that problem would have been fixed, so be insistent. (Remember about the “squeaky wheel”! That is good advice to you!)

The nurse quickly acted on my husbands words and in a matter of minutes I was comfortable. My family stayed a little while. My pain was gone so I could finally sleep. When I got to my room there were my two sister-in-laws, Mom, Mike, and lots of flowers and gifts. One sister-in-law got lots of ginger ale for my nausea, which I needed so much. But it got late and I sent my family home as they were exhausted. I figured that was the end of the first day of surgery…BUT… here is a very important thing for you donor’s family members to know, and after all is said and done, this I feel is the most valuable part of this experience. Do not leave your loved one alone the first night. If some one can stay with the donor for the first 48 hours in the hospital, it is very helpful. In my case, I would have recovered 4 times faster.

The situation in my entire family is a problem with any kind of medicine. From anesthesia to pain medication. I started throwing up. I called for a nurse-she did bring in something to be sick in, but then left me alone, to fend for my self again. I was too weak and was sick all over myself. And it was like that all night. The next morning I had a wonderful nurse, Sandy, come in. She changed my sheets and johnny, gave me a wonderful clear liquid breakfast, and helped take off my leggings (to prevent blood clots) so I could use the bathroom. My first time up. While I was gone she changed my bed. I was pretty weak, but it felt good to get up and have that catheter out. Sandy brought a few cans of ginger ale to sip on, and that helped me with my nausea. I stayed on a liquid diet and felt really good. The hospital gave me such a variety of nutritional liquids, I felt good and knew I would bounce back quickly. At dinner they gave me a cookie and I still had some ginger ale and had that for a midnight snack. I really felt so glad it had been an easy surgery and that I had turned the corner already.

It was the second day when all that changed. First of all, I couldn’t get any ginger ale and they brought real food, fake eggs and raw bacon, etc. I was still a little nauseous, and still had the IV in and on pain medicine. But now I wasn’t getting any food or liquids in me, so I went backwards very quickly and became very weak again. I was still a very quiet patient, alone in my room and basically ignored again. I had waited all day for drinks that I was promised, but never received. It was hard to get the nurses to come in and take off my leggings so I could use the bathroom. Then once I did, I couldn’t get them back in to put them back on, which was scary in it self. Some part of that day Pat, Pete’s wife, came down to help me out of my leggings and helped me up and even helped me wash up a little, then she gave me a present to cheer me up. And that was the second day.

On the morning of the third day, Thursday, the doctors came into my room barely asking how I was. By now, my IV was a mess and my hand was swollen to 4 times the normal size. I was still weak and really sick, but they felt I could go home. I look back at it now and think that they knew if I stayed in that hospital any longer, they would have probably killed me. When Mike called early that day and asked how I was, I told him “lousy, but the doctors are thinking of letting me go home today”. He was delighted, and came right away. As soon as the nurse of the day said, “yes you can go home today”, Mike was all over that and had my stuff packed in two minutes. I told him I wanted to go home so bad, but didn’t feel I could make that long drive back. He did say, “honey if I have to carry you every step of the way, you’re out of here”.

I ended up sleeping all the way home, which was heaven sent. Even as I was checking out, they brought my lunch to my room and it was ham, etc. I was suppose to be on a low sodium diet. The poor advocate came to my room to check on me for the first time, while Mike was packing my things. She got an ear-full from my husband, brother, and mother on how mistreated I was. The treatment by hospital staff was so bad, that for months I couldn’t talk to friends about it because I would cry, and I don’t cry easily. Those three days were, by far, the worst part of the entire procedure. Unlike Pete’s, my care was terrible, and if it hadn’t been for that one nurse, Sandy, I wouldn’t have been even well enough to go to my mother’s on that Thursday. So, my thoughts on this experience: do not leave the patient alone while in the hospital. Any procedure, any hospital…why take a chance? The first three days after a kidney transplant, donor and recipient, are crucial to recuperation.

Once I got home I had the pain pills to deal with. Aside from over the counter medicine, all medicine is a nightmare for my family. By the time the fifth day came, I needed to get off the prescription pain medicines. They were still making me nauseous, so I couldn’t eat, and got weaker. Then an allergic reaction occurred. I had called into the doctor Saturday night because I was was starting to get a rash and other symptoms. So the doctor called in another pain medicine for me. I did try to use just Tylenol all day Saturday, but the pain was still bad enough by the fifth day that I couldn’t sleep, lay down, or even sit comfortably. The new prescription was the same family of chemicals. So now besides the normal “after surgery recovery problems”, now I have a rash, and worried about my breathing becoming troubled. I don’t know what the doctor was thinking. I, again, called into to the doctor, and he recommended Ibuprofen. And even though I was still uncomfortable, most of the other side effects went away. So try to get off pain killers as soon as possible if you have any kind of problems with medication.

Mike had to go back to Maine on Saturday, and felt pretty bad about leaving me in that condition, but felt I was in good hands with my mother. I was really hoping to have turned the corner by Saturday before Mike had left. I found out later, he almost turned around and came back. I was in good hands, but secretly wished he had come back. Both Pete and I had to go to the bathroom almost every hour all day and night for a few days. This affected me longer than Pete. Veronica didn’t have that problem at all. Walking to the bathroom every hour helped to give me a lot of exercise.

Sunday, I felt a little better on the Ibuprofen, felt well enough to eat, and stayed with my ginger ale. Even Ensure was hard to get down. But I was finally sleeping again, and knew the surgery pain was starting to leave, and so I forced my self to eat. Like 1/8 cup of cream of wheat, or one graham cracker, pretty pathetic. But a new problem reared it’s ugly head. From so little food, I got a whole bunch of acid in my stomach and up in my throat (acid reflux?). Ginger ale was even awful. I wasn’t sure what it was, but then Mike suggested taking something for heartburn. A good friend came over with some AlkaMints, so I took a couple, ate a little food, took two more, and went for one of my wonderful naps. When I woke up, two hours later, it was gone! So was the nausea and most of the pain. I felt wonderful! The second time in eight days I finally felt good and knew I had turned the corner. That night, Mom cooked the best meal of my life: chicken, baked potato, and corn. For the next week, all food was wonderful !

From that point on, I did nothing but heal. I went home to Maine right on schedule, three weeks later. The doctor didn’t exactly advise it so soon after surgery, but I wanted to go home. The truth of the matter is, the trip would have been next to impossible if not for my brother and sister-in-law helping me with wheelchairs and shuttles through the airports. Even with all this assistance, I had to rest on the floor in the airport terminal half way home. Once home, I was pampered and allowed to rest all I required to get 100% better. I got a little stronger everyday. And as Dorthy said, “there’s no place like home”.

ONE YEAR LATER (MORE OR LESS)