This page was last updated on 04/25/1999.
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I chose a "diary" (chronological) format mainly because that's how I had originally written it and also because it gives a timeline of when each event takes place. The actual transplant took place on Friday, February 6th, 1998 at Austin Diagnostic Medical Center (ADMC)¹ in Austin, TX. Their Renal Transplant Center has been in operation since October 1996. To date they have performed about 25 transplants.
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¹ (As of about June, 1998 the Austin Diagnostic Medical Center became the
North Austin Medical Center.)
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ADMC is a great facility. It has the hospital itself with 146 private rooms, the Austin Diagnostic Clinic (ADC) - all our doctors with the exception of dentists are at ADC, the Renal Transplant Center and labs. Everything you need is in one place. Medical records are shared by all doctors so they each know what other doctors have done, what medications patients are on, etc. We are very happy with the medical care and the facilities at ADMC/ADC.
This is my wife Evie. She was diagnosed with diabetes at age 14. She started seeing a nephrologist in July of 1997. She was referred to him by her endocrinologist and she thought she was going for a regular visit. He started talking about failing kidneys immediately but we didn't get the impression it would be so sudden.
Kidney function started to diminish and by Dec. 1997 it was less than 5%, which is why dialysis treatments had to start. 27 years of diabetes and high blood pressure had destroyed both her kidneys.
We met with the Transplant Coordinator at ADMC in early August of 1997 and started getting familiar with what lay ahead if we indeed decided to go ahead with a transplant. Five persons volunteered to be tested for possible donors: A friend, Evie's sister, Evie's 2 nieces and myself. One person was immediately eliminated, without testing, because of incompatible blood type. Evie is O+ so only type O is compatible. Three of us were tested in September. Results were: one incompatible blood type, one we never heard from again, and I was a blood match (O+) and a 0 antigen match. The last person was tested in early January 1998: blood match and a 2 antigen match. After discussing it with the doctor, he was of the opinion that a 2 antigen match would not be significantly better than a 0 match. Also, because of work commitments, that person would not be able to undergo further testing until the summer of '98. The doctor felt I would be an acceptable donor. I did not want to wait until summer and neither did Evie. Neither of us wanted to take a chance waiting for a cadaveric kidney. The average wait here is about 2 years.
The first part of this diary deals with Evie's dialysis treatments and the complications that developed. If you don't want to read that part, I suggest you start reading at the point where I make my decision which is followed by details of all my tests, the actual surgery and recovery.
For the last week or so, her legs (mainly below the knees) have been swollen (fluid retention), had nausea and vomiting, very red eyes, and tired. The last set of tests indicated a serum creatinine level of about 15. She tried to put dialysis off as long as she could, but the doctor finally said it was time.
We went to the hospital this morning (6:30AM) to have a "perm cath" (a catheter) put in. It is a surgical procedure that takes about an hour and is done on an outpatient basis. The catheter is placed in the chest, on the right side, about 5-6 inches above the breast. It is basically a connection to a vein and to an artery, with two small tubes outside the body which are used to connect to the dialysis machine.
After surgery and recovery it was time for dialysis: she did not want to be there! I felt very helpless. She was dialyzed for two hours, removing 2Kg (about 4.5 Lb) of fluids.
We got home at around 4:30PM. She was tired, I think mostly emotionally drained, from everything that had happened today. She sat on the recliner for most of the afternoon and evening. Her neck and chest hurt some because of the surgery.
Next dialysis is Wednesday, 12/17/97.
About a month ago we had made reservations at a very nice restaurant (Green Pastures). We had made them for today thinking it would be just before she'd need to go on dialysis - we missed it by one day. Anyway, judging from yesterday, I thought we wouldn't go. However, Evie felt really good today so we decided to go. I must say she looked beautiful! We had a real good time, just the two of us - it reminded me of when we were dating.
The kids took this picture before we went out.
So far things are going smoothly. Evie is responding well to dialysis: much more energy and feels well. They haven't hit her "dry weight" yet.
The hospital (ADMC) was full. The only beds available were in the Intermediate Care Unit (IMCU) so that's where we headed. She was there for about 2 hours before she was moved to the Ancillary Care Unit (ACU). She was still not feeling well and not eating or drinking. An IV was started in order to get some fluids into her.
They finally found a bed in the renal floor and moved her upstairs. She went to dialysis immediately. Slept most of those 4 hours too. Once back in her room she looked and felt much better. I brought the kids to visit and everything went well.
As for me, today I finally decided to be the kidney donor for Evie. I had actually made that decision a while back, but we were waiting for the results of the last donor candidate. The results were in today and she was no better a match than I was, so I would be the one. I had done the blood/tissue typing tests in September. I'm a blood match (O+) but a 0 (out of 6) antigen match. However, having done some research on transplant statistics, and having talked to Evie's nephrologist, I feel that a living unrelated transplant, even a 0 antigen match, has a much better survival rate than a cadaveric transplant.
I want a better quality of life for her. Dialysis is very confining - you can't travel, you must go sit for 4 hours every other day, many dietary constrains, it's very draining on the body, chemical imbalances, etc., etc. I don't want that for my wife. Her quality of life and well being are worth a lot to me. I want to free her from dialysis and hopefully also give her better health by giving her one of my kidneys. This was something I had wanted to do since discussing transplants with the transplant team and the doctors. I consider it a privilege and an honor to be able to do this for her.
I stopped by the Transplant Center office and talked to the coordinator. I made the appointment with the nephrologist for my Transplant Evaluation Physical and History. The coordinator made appointments for the first set of tests: blood work, chest X-ray and an EKG. I want to have all the testing done as soon as possible so I asked them to make appointments ASAP.
My worry now is that I won't be an acceptable donor - about 50% of potential donors are rejected for one reason or another. I'm not a superstitious person but I have my fingers, arms, legs, eyes and anything else I can cross, crossed ...
Today was my first day of testing ...
The good news is that I do have two kidneys :-) The bad news is that I didn't get to see any of the pictures :-(
Unless there's a history of Diabetes in your family you probably won't have to have this test done.
I spoke to the Transplant Coordinator afterwards and she had gotten back everything but the GTT results. Everything was OK so far. The next test is a renal arteriogram. Don't know when that will be, hopefully early next week. Since the arteriogram is an "invasive" procedure they don't schedule it until all previous tests have been completed and you have passed.
Checked in at about 6:30AM. Had blood drawn (that's 4 times). Was taken to outpatient rooms (ACU) - I know my way around there quite well, and I also know some of the nurses. This is my first time there as a patient though. One of the technicians explained the procedure and all the risks, and asked me to sign a consent form.
Had an IV line put in and started saline solution. About 1/2 hour before the procedure I was given a shot of Demerol - *THAT* was the most painful part of the procedure! Demerol started kicking in in about 10 minutes: my eyes felt a little heavy but I was not "out" - I did not want to go to sleep. I do not like being "out of it." I like to be aware of what is happening to me.
I was finally taken to the procedure room at about 10:00AM. The table was very narrow (for me) but not uncomfortable. The nurses and assistants were very nice. They tried to put me at ease, asked what kind of music I liked and played it. First thing they do is shave the groin area, in my case the right side. Then they disinfect it with betadine and put sterile sheets around the prepped area.
Then the doctor comes in, and the show starts. I felt a lot of moving and pushing around the entry point, but no real pain. The first time they injected the "contrast" (dye) felt odd: very warm inside but no pain or discomfort. Every time they took pictures they would replay them for me. Got to see nice shots of my kidneys and the arteries supplying them with blood, my bladder, pelvic bone, spine, etc. Believe it or not I really enjoyed that part. The doctor told me I had "unusual" (his word) blood supply to the kidneys: I had 2 branches of the renal artery supplying blood, instead of the usual 1. In most people one renal artery branches off the main artery carrying blood to the lower body and then splits into several other branches as it enters the kidney. In my case I actually had 2 branches coming into the kidney and then each of those split into several other branches. That meant the surgeons would had to remove the 2 main branches and splice them into 1 before attaching to the recipient. The doctor said surgeons didn't like doing that.
Once done they apply a small, dish shaped plastic "thing" (the doctor called it "the pizza") to the entry point and clamp it to the table to apply pressure and stop the bleeding. That lasts for about 10 minutes. Then the clamp is removed and a dressing is put on the entry point. In my case, before the nurse could put the dressing on, I started to bleed. Must have been a lot because I felt the blood running down towards my buttocks and down the inside of the leg. They applied pressure for another 5 minutes and the bleeding stopped. The whole procedure took about 45 minutes. Slightly longer than usual because I kept asking questions and they kept replaying each series of pictures for me.
Once back in the room I had to lay flat and without moving for 6 hours - actually without moving the right leg. They wanted me to drink plenty of fluids in order to flush out the radioactive dye - good idea I guess. Since I had already had my fun watching the procedure, I slept most of the afternoon, waking up every hour for blood pressure/temperature readings. I had my friend pick me up at about 5:00PM. Evie couldn't drive me home because she had started dialysis at 4:30PM. You are not allowed (supposed) to drive for 24 hours after the procedure.
The groin area felt very sore - not pain, but rather like a bruise. I just laid down the rest of the evening/night.
Rejection in particular worries me, specially being a 0 antigen match. I will be very upset if she does reject, but I can deal with it; after all, her immune system is just doing its job. What worries me is how Evie will deal with it.
The whole family met with the social worker at the Transplant Center. He wanted to talk to the kids to see how they were handling it. I think he was impressed at how much they knew: we've been very open with them. We've answered all their questions and when we couldn't answer them, we took them to the nephrologist and he answered them. I was really impressed on how the doctor talked to the kids, explaining things in ways they could understand (kids are 7 and 10 years old) and how he reassured them that mommy and daddy were going to be OK. We've reassured them that we would be OK, but I believe it really hit home hearing it from the doctor. I know they're nervous and anxious, as are we, but I also know they will be OK.
After the meeting, we took them on a tour of the hospital. We showed them where surgery was going to be, the recovery area, and the waiting room. They're already familiar with the patient rooms since they've gone to visit Evie several times.
She will be taking 400mg Neoral (cyclosporine) and 1000mg CellCept (Mycophenolate). Half dose of each twice a day (12 hours apart).
Yesterday was my last day of work. I figure I'll be out 3-4 weeks.
Today was the pre-admission check-in. They do it a couple of days before so you don't have to spend half a day doing it on the day of surgery, and so that all lab work results are back. We arrived at 7:45AM. There was no record of what needed to be done; it's like we're the first people going thru this. Very annoying. Evie's blood work had to be done before 9:00AM because she was due for the next dose of Neoral (cyclosporine) and Cellcept. We called the nephrology nurse and she ordered the cyclosporine (CSA) level test which was the most important. Went to the lab and Evie had blood drawn.
We finally got a hold of the Transplant Center and they straightened out the mess. Evie was almost done registering but had to stop and go to the nephrologist for a final pre-transplant check up. After that, it was back to admissions. They finished registering Evie and than did me. Once again, I had to tell them to make sure all the work done today got charged to an internal, Transplant Center account. They did that for her and then proceeded to tell me that the donor's work had to be paid by his/her insurance. More phone calls before they got that taken care of. Unbelievable.
After completing registration (and it's now going on 11:00AM), we both go have blood drawn (2nd time for Evie today) and Evie to have a chest X-ray taken and another EKG done. I don't need either of those because I had them done less than a month ago (actually about 2 weeks ago). Then it was off to Day Surgery where a nurse took our medical history and we signed consent forms, pretty much allowing them to do anything to us, knowing that everything could go wrong. Then, the Transplant Coordinator came by, while we were sitting there waiting for the anesthesiologist to show up, and Evie signed more consent forms. She also told me that they would be taking my left kidney. Both my kidneys have the multiple renal arteries so they take the left one because it has longer arteries thus they have more to work with when attaching it to the recipient.
An added risk for Evie involves clotting and possible blood flow cut off to the new kidney. This is because my kidneys have 2 branches of the renal artery supplying blood, instead of the usual one, and the surgeons need to splice the two branches into one when they make the connection to the iliac artery. More chances for clotting.
After about 45 minutes the anesthesiologist finally showed up and told us all about anesthesia. He suggested an epidural for pain control for me. I balked at that and asked about alternatives. Alternatives are pain medication in IV (basically a morphine pump that I control and will have me "groggy" all the time if I use it a lot), or pain medication shots as needed. I don't really care for either alternative and I don't want an epidural either. I have some thinking to do ...
It was 1:15PM when we left ADMC and headed downtown to see Dr. Houser (surgeon/urologist) for my 1:45 appointment. This is my last doctor visit before surgery. Dr. Houser explained the procedure and all the risks. The incision will be on the left side, just below the last (bottom) rib. They need to cut thru several layers of muscle, as well as some nerves. She said I will bulge out slightly on the left side because some of the nerves cut control muscle tone. Given my body shape the bulging will be hardly noticed :-) Left there at about 3:30. I'm all done with all my testing and I'm ready.
Dr. Houser also suggested the epidural for pain control. She said I wouldn't even know it was there and that it was very safe and effective. I'm not crazy about anybody sticking needles in my spine, but I think I'll go with it.
We now know what the surgical teams will be:
They will both remove the left kidney. They will remove most of the ureter and then sort out the renal arteries/veins and remove the longest possible sections of those. Then the kidney will be flushed with cold water/saline and Dr Hodge will walk it over to the next operating room where Evie will be waiting. Dr. Houser will close me up: several layers of stitches inside and stainless steel staples on the outside. I will be laying on my right side, left arm extended over my head.
After surgery I will go to Recovery until I wake up. Then, if everything is OK, I will be taken to my room.
They will both splice the renal arteries on my kidney into one, and then connect it to her iliac artery, as well as connecting the renal vein to the iliac vein. Then both will close up.
After surgery Evie will be taken to ICU. They expect her to be there for 1 day and then, if everything is OK, she will be taken to her room.
My parents arrived this afternoon from NJ. My brother drove in from Irving, near Dallas, this evening. My parents will be staying here for at least the first week, longer if needed. My brother will stay until next Thursday (2/12) and then needs to get back to work. They will be taking care of the kids and running the house while we're in the hospital.
My other brother will be coming from California on Wednesday, 2/11 (to relieve the brother leaving Thursday) and will stay until Sunday (2/15). Then, our friend comes in from North Carolina on Saturday (2/14) and stays for one week. After that, Evie's sister comes in from NJ for one week. We have the first 3 weeks covered for having someone stay with us. In addition many neighbors and friends have volunteered to help in any way they can. It really makes you appreciate them.
We spent some time showing my parents how to get to the hospital, where stores were, where school was, running down the list of things to do: who was picking up the kids when, when they got home from school, who had baseball tryout Saturday and at what time, etc., etc. They were a little overwhelmed, that's why I wanted my brother here!
Lab technicians were waiting for us at Brackenridge to do the blood work. Got that done and headed back to ADMC to check in. Got there at about 5:00AM. We were originally scheduled to be here at around 5:30AM.
We went to the lab and Evie had blood drawn to check cyclosporine levels. I had my blood drawn on Wednesday so I didn't need any lab work. After that we went to Day Surgery to get ready. I was called in first and taken to a pre-op room. I put on a hospital gown (lovely pink!) and the nurses took all the vital signs, weight, etc. The anesthesiologist came in and asked me if I had decided on the method of pain control. I told him I'd go with the epidural. Evie came in a few minutes later and went thru the same drill.
Our two rooms were connected by a bathroom. If we kept the bathroom doors open we could see each other. As it was, I spent the whole time in Evie's room and only went to my room when nurses came to do something to me. My brother and father were there. My mom stayed home to see the kids off to school. My brother went to get her after Evie was taken to surgery.
I wasn't scared or nervous - I was a little anxious though. I wasn't even sedated before going to the OR. They finally came to get me at about 7:20AM. I went over and said my good-byes to Evie, my brother and my father. I hugged Evie, told her I loved her, wished her luck on her surgery, told her everything was going to be OK and that I would see her tomorrow. Evie was crying, and I was later told my father was crying too. I know she was *VERY* nervous. I didn't want her to worry about me. I was doing something very special for her and was worried because of what she was about to go thru, and this was only the beginning. I had thought about this moment and thought I was ready. By now I just wanted to "get the show on the road ..."
Leaving Evie there, crying, is a moment I will never forget. I have always been by her side and, for the first time - and probably when she needed me the most, I would not be able to be there with her. I tried to rationalize that "part of me" would be there, but that didn't make it any easier. At least I knew my brother and parents would cover for me until I was able to visit her.
After the ride to the OR I moved over to the operating table. It was cold in there! There was a bean bag cover on the table, so it would mold to my body. The bean bag was about 2 inches thick and running from my shoulders down to about my knees. Laying on the table wasn't very comfortable because my head was lower than my body. One of the nurses rolled a towel and put it under my head - much better! I had "air cuffs" put on my lower legs. A pump would inflate them in a sort of random manner to stimulate blood flow to the legs. I had to keep those on until I started walking. I also had a little oxygen tube placed in my nose. It would come off after I woke up. Meanwhile, the anesthesiologist started an IV in my left arm (ouch!). I looked over to the clock and it was 7:35AM. I asked him if he was going to use a mask (gas) to put me to sleep. He answered he'd use a combination of mask and IV and that's the last thing I remember ...
... until I woke up in Recovery. It was about 1:00PM. I opened my eyes and saw the ceiling lights and remember thinking to myself: "great, I'm alive!" I flagged the first nurse I saw and asked how Evie was and how "Lefty"² was doing. I was groggy but aware enough to know I felt all right.
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² I temporarily named my left kidney "Lefty". I didn't like
referring to it as "my kidney" - it wasn't mine anymore, "my ex-kidney",
"your new kidney", "the kidney" or any other impersonal reference of that sort.
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I must have been bleeding a little from the incision because a couple of nurses were putting pressure on my left side. I felt the pressure but didn't feel any pain. I also remember seeing Dr. Houser and her telling me that everything had gone well. I was taken to my room (235) at about 2:00PM. I don't remember much because I was still kind of groggy. I couldn't believe there wasn't any pain!
I had visitors that afternoon. I remember who was there but I don't remember much of what was said - by me or them. My brother told me I was coherent and was making sense, but I don't remember much. I also received several phone calls that afternoon but I can't remember who I talked to. I just wanted to sleep.
I asked my brother how Evie was doing since he had gone to see her in ICU and he had heard all the updates from the nurse/surgeons during surgery. Removal of my kidney had taken longer than expected because I had 3 renal arteries (instead of the 2 the angiogram had shown). That also meant Evie's surgery took longer because they had to attach 3 arteries instead of 2. "Lefty" started producing urine right away. Evie was doing well, talking and smiling. My brother even brought the kids in to see her. Knowing that Evie was doing so well made me real happy!
I remember my father finally telling everybody (mom, brother and kids) it was time to leave because I was tired and needed my rest. I slept most of the night, interrupted several times by brief bouts of dry-heaves (because of the anesthesia).
The oxygen tube came off sometime after I was in my room. I remember the nurse taking it off but I don't remember what time that was.
I waved to Evie as she was brought to her room (237) later in the morning. We were 1 room away from each other.
The amount of pain medication was being slowly reduced. I now felt "pulling" at the incision and inside. Still no pain. I did have pain in my right leg, where the thigh meets the buttocks. I later figured out what that was: it was a muscle pull that occurred when I was turned on my side (right side) in the OR and stayed in that position for over 3.5 hours. The right leg muscle pull was the most painful part of surgery!
Later that morning Lisa (1st shift nurse) came to take me for a walk. While getting out of bed I thought my insides were going to spill out! Lots of pulling. I had trouble walking because of my right leg and was limping noticeably. The first walk was about 100 small steps (I'd guess no more than 40 yards) and took about 10 minutes. I had to take a nap when I got back, that's how tired I was! I walked 2 more times that day and I napped after each walk. I didn't eat much. Wasn't hungry. I drank some soda and ate some Jell-O. I slept very well Saturday night.
The Foley catheter, which was inserted while under anesthesia, was not too bothersome. Actually it was kind of nice not having to get up to go to the bathroom - that would have been a lot of work. The only "problem" was that the tubing was kind of long so the nurse taped it to my leg and that solved the problem. Not as bad as I thought it would be.
Pain medication kept diminishing but I still felt no pain. I was sore, and felt like I had a big bruise on the left side. I always felt "pulling" at the incision and inside, but it wasn't painful. The anesthesiologist came in and told me that they would be taking the epidural out tomorrow.
Felt pretty good but tired.
Epidural, IV line and Foley catheter were all out by 10:00AM. Lisa told me I had to pee by 3:00PM (end of shift) or the Foley would have to go back in. At 2:45 I was in the shower running warm water over the groin area trying to coax my bladder muscles to work again. I finally went! After that it was easy. I have temporarily lost a lot of the abdominal muscle control and is hard, and painful, to push!
Went for several more walks today. They were getting longer because I felt better and I didn't have to drag anything with me. I felt good after walking and didn't need naps anymore. I had read that walking made you feel better but I hadn't believed it. They were right after all. I felt the best while walking. I made it a point of not laying in bed after I got up: I sat on the chair, went for walks, visited Evie, anything but laying in bed. I was taking Vicodin for pain - wasn't sure if I really needed it but I was too chicken to not take it. I liked not being in pain. Not at all what I had thought it would be.
I still had not had a bowel movement. Because of the extent of the surgery, it is very difficult to push (using abdominal muscles). My stomach felt very full. I ate very little and drank some soda.
Today was my worst day. I did not feel good at all. I spent most of the day in bed, that's how bad I felt. I started taking stool softeners (from Evie) and that did the trick. I went to bed at about 6:30PM because I was very tired from being up most of last night. I was up at 1:00AM to go to the bathroom. Things were starting to move.
Evie's dressing was taken off. It had been pulling everything tight. Now she can feel pain! She was taken off IV, and blood pressure medication was stopped. Her blood pressure dropped during the afternoon. Was very lightheaded and nauseous. I heard her throw up a couple of times.
My blood pressure was going up. I could feel my eyes "popping out." When the IV ran out (11:00PM) I told the nurse I didn't want another one. I put out 2 liters (about 2 quarts) between 10:30PM and 2:30AM. Every time I laid down to go to sleep I felt I had to go. Righty was working overtime! I did many "laps" around the IV pole in my room because it was easier to just stay up, rather than getting in and out of bed.
Evie had a blood transfusion (2 pints). By the end of the second one you could see the difference in her. She's feeling good again.
Dr. Houser came in. I told her I was ready to go home. She said OK! She also said the nurse would be taking my staples off. I "questioned" her about that but she reassured me that I was stitched very securely inside and that the staples were only on the skin - nothing was going to spill out. A little later on Lisa came and took the staples off (17 of them). I didn't even feel the staples coming out. The incision, which we measured at 9 inches, is healing very well.
I signed the discharge papers at 1:30PM - I was a free man again! First thing I did was to get dressed, with a little help from my brother, and go for a walk outside the Renal unit.
I hung around until 4:30 when Evie was discharged. She had to wait for Dr. Welch (one of the nephrologists) to come in and take out the perm cath used for dialysis. They had left it in "just in case" there was a problem with "Lefty" and she needed to be dialyzed. Good riddance! Hope we never see one of those again!
We were home by 5:00PM. A total of 6 days each. Walked 1/4 mile on the treadmill. Had dinner (real food at last!). Mostly sat in the recliner. Felt good.
Had a fun time trying out our bed. Not having side rails I wasn't sure I'd be able to get out of bed by myself. I can't roll to either side so I didn't want to be stuck. I finally figured out how to get out of bed by myself without help. Evie didn't have that problem - she's able to move quite well.
04/25/99: Here are some pictures:
I'm taking Vicodin (for pain) at night so I can sleep. It helps some. Muscle control is coming back slowly. Left front of my stomach is numb (that's what hurts at night), as well as around the incision. I can feel pulling both at the incision and inside but I feel no pain at all, except when I lay down flat to go to sleep. I'm now walking 1.5 miles every day: 1/2 mile in the morning, midday and afternoon. Stamina is coming back slowly.
Had an ultrasound done. Later that afternoon the Transplant Coordinator call to tell us Evie had a large blood clot around the kidney (that explains why she needed the blood transfusion in the hospital) and not to worry because it would dissolve and drain out on its own. I'm worried.
After the nephrologist it was off to the Transplant Center where she was to see Dr. Hodge, the lead surgeon. He told us the same thing about the clot. He said that it could take several weeks for the clot to disappear completely and that he preferred to let it drain/dissolve on its own. Surgery to remove it was not recommended because healing would be slow and there was more risk of infection and clotting again.
This was my first time (that I was awake) meeting him. He did remember me - he was also the lead surgeon for my surgery. He wanted to look at my incision to see how it was healing. I asked him about the pain in my stomach and he said it was from pulling on muscles in order to keep everything accessible during surgery. He said in the old days the incision would have been about 6 inches longer (almost to the belly button) but now a days they keep the incision smaller and thus need to "move things around" in order to get access to what they need (in this case, to get near the bladder in order to remove as large a section as possible of the ureter). He also said it would take 4 to 6 weeks to "feel good" and 6 to 8 months for all the internal muscles/nerves to heal/re-generate completely.
Evie is also doing great. She tried driving on Friday and had no problems. Weight is coming back up slowly. She doesn't need to wear a mask anymore.
Received the "Kidney Transplant" tape I had ordered and watched it tonight. It's one of the episodes of the series "The Operation" which was/is shown by The Learning Channel. This particular episode deals with a living-related transplant, and shows both the retrieval of the kidney from the donor and the transplant into the recipient. It's only 45 minutes long so it is obviously condensed. I wish I had seen it before surgery.
For those interested, I ordered the tape from Films For The Humanities in Trenton, NJ. Their phone number is 1-800-257-5126. The tape is titled "Kidney Transplant", Item #BVL6256, and costs $39.95 plus $5.95 shipping and handling.
Evie is doing great. Clot is decreasing in size. She has little feeling in her right leg but that will come back in time. Weight is coming back up. Lots of energy. She's starting a part-time job at the kids' school on Monday.
The future looks bright ...
I am amazed at how well everything has turned out so far. Sometimes I think about what we went thru six months ago and it really is hard to believe. Evie is just doing wonderful - she's full of energy and full of life! Other than seeing her take her pills, you'd never know she was ever so sick, it just amazes me. We're doing things now that we would not have been able to do 6-7 months ago, little things like going out to dinner - no more dietary constraints, riding our bikes, going swimming and going on vacation. But for me, the most remarkable thing is how good she feels and how healthy she looks. Her diabetes will never go away, and sooner or later (later, much later, I hope) trouble will develop again. But for now, we are enjoying the good health.
She has really not experienced any severe side effects from the immunosuppresants. She is on very low doses of Cellcept and Prednizone, so maybe that helps. Her hair started getting very thin about 2 months after surgery. It has now, as of about the last month, started to grow/get thick again. That was the body's way of dealing with the shock of surgery and drugs: it gets rid of things it doesn't need in order to concentrate on the things it does need.
She was dealing very well with the hair loss, although I knew it really bothered her. Cold as it may sound, the choice was very clear: give up the hair for a healthy kidney. As it turned out, I'm very relieved and very happy the hair is coming back. That is really the only side effect. She hasn't even caught a cold yet!
As for me, I am also doing fine. I am very much back to normal. The only time I remember I had surgery is when I notice the scar on my left side. A small inconvenience for me that made a huge difference in my wife's life. If I could do it again, I wouldn't hesitate to do it!
I'll be back again in about six months with the one year update. Stay tuned ...
It has taken me a while to update the diary because, in all honesty, I forgot about it. I thought about doing it right after the one year anniversary (Feb. 6, 1999) but it just got moved to the bottom of the pile - too many other things to do.
The only major problem with Evie has been that the white blood count has been bouncing up and down. It got so low at one point that doctors told her to minimize all contact with people. She was out from work for a week. The have been adjusting Prograf and Cellcept, trying to stabilize the CBC results. She is now on 4mg Prograf (up from 3mg) and 500mg Cellcept (down from 2000mg) a day. They increased Prograf in order to compensate for decreasing Cellcept. CBC has come back up normal and remained normal, so far, for about the last month. The amazing thing, to me anyway, is that she hasn't even caught a cold yet!
Nothing new to report on me: everything normal, as if nothing had happened.
I have received several e-mails from persons that have read my diary. Although I've already thanked them, I'd like to thank them again. I don't know how they found the diary (I'm guessing some of the search engines found it - I don't have links to it from my web page), but I'm glad they did.
I'll probably make the first Y2K update on the two year anniversary (Feb. 6, 2000). See you then ...
Next a few words about pain ...
Different people have different pain thresholds. I believe mine is on
the high side - it really has to hurt before I complain about it.
Having said that,
pain wasn't all that bad, certainly not what I had thought it would be.
I was never "in pain." The most painful thing for me was the muscle pull
in my right leg, and that was probably just a fluke.
Yes, your insides hurt when you sneeze, when you bend, when you move too
quickly, when you cough, etc., etc., but you know that and learn to
plan ahead a little. In my case I felt sore sometimes and very sore other times
but never "in pain."
And finally ...
Several people told me how brave I was, or what a brave thing I was
doing or had done.
I did not do this out of bravery. On the contrary, I'm not brave
at all. To me "brave" people are those that risk their lives to save others.
Deciding to donate a kidney doesn't make me brave. My
life was never at risk (other than normal risks during surgery).
Had I felt I would be at risk I wouldn't have done it. I'm not brave.
My view of what I did is much more simplistic: My wife had no working kidney. I had 2 healthy ones. I only needed 1. I could give her 1. I gave her 1. Very simple. I did it because I love my wife and I love my children. I did not want to see my wife spend years in dialysis waiting for a kidney - two months of dialysis was enough for me (and her). I wanted her to have a quality of life that would not have been possible while on dialysis. I wanted my children to have mommy around all the time, not every other day. I wanted to do the transplant while my wife was relatively healthy and young, before dialysis took its toll on her body. Lastly, and to me this was very important, I wanted to buy some time in hopes that a cure for Diabetes and/or kidney decease is found, or better treatments come along.
The actual decision to be a donor was not a hard one for me. Looking back now I actually made the decision when I decided to be tested. As soon as we found out that I could be a donor I had a feeling that I would be the one. Deciding to be a living donor is a very personal, private and tough decision. It's a decision that should be made by you and only you, without outside influences of any kind. I consulted with doctors and the Transplant Center to get data to support my decision, I read a lot, I gave it a lot of thought. In the end I alone made the decision. This is a decision than can't be made by consensus.
Being a living donor worked for me. It's a wonderful feeling looking at my wife feeling so well and seeing her full of energy. I had the privilege of being part of a miracle - the miracle of life. Not many people will ever know what a great feeling it is to give life back to another human being. I'm very lucky to have had the opportunity to do that for my wife.
To me, being a donor was definitely worth it!
This page was last updated on 04/25/1999.
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