My Transplant!

The Transplant 12-4-98

My name is Judy. I am Dale’s wife and caregiver. I am going to write this part of Dale’s story, as he does not remember all of the things that he went through.

Dale had a clinic appointment with his transplant surgeon on Dec.4. I usually put our bags in the car when we travel more that 30 miles away from home. This day I forgot. Dale’s appointment was in Phoenix. That is about 45 miles from our home. We met with Dr. Nakazatto at 5:30. He told Dale that he wanted him to have another ultra-sound and to make an appointment in two months. He was at the top of the list and he should be called soon.

After the appointment, we went to visit my Aunt Mary. About 8:10 a pager went off. I thought it was my cousin’s pager. It ended up being Dale’s pager and it had the Tucson area code. I called the number on the pager. It was the Transplant Center at UMC in Tucson, AZ. They told me there was a possible donor for Dale and to hang tight. They would call us back to verify. About 20 minutes later we got a call back. They told us to come on down. Of course there was no time to go home to get our bags.

My Aunt Mary and my cousin wished us the best and sent us on our way. As I was getting ready to get on the freeway, I realized that they were getting ready to close that ramp. I excitedly told the guy that my husband just got beeped to go down to Tucson for a transplant. He looked at me like I was crazy, but he let me go anyway.

It was a stressful drive down. For one, I was driving a rental car as ours was in the shop for repairs. There were a lot of semis which always make me nervous. To top it off, the song "Under Pressure" by David Bowie came on the radio. We hadn’t heard that song in years. We both thought it quite ironic. Dale was more worried about getting sent home and wondering where we will eat then he was about being a prospective transplant recipient. After about an hour of driving we were both pretty quiet. I felt a peaceful feeling come over me. It was then that I knew that everything was going to be all right. The rest of the night just seemed to flow. Everything fell into place.

We arrived at University Medical Center in Tucson exactly 2 hours after we left Phoenix. As we walked on the fifth floor, we were greeted by Crystal. She was Dale’s prep nurse for the night. She explained what was involved in getting ready for transplant. After some tests, Dale had to shave his beard and mustache. I have never seen him without his mustache in the 24 years we have been together. All during this time Dale was in great spirits, telling jokes and making everyone laugh. He was even telling the jokes as they wheeled him into surgery at 1:30 am.

It was a long and scary wait, but exactly 12 hours after they wheeled him away from me they were wheeling him past me. "Mrs. Leeb- Dale’s doing great!" After they got him settled in ICU they came out and told me how the transplant went. They were pleased at the way the transplant went, but they reminded me that sometimes there are complications after. I had done enough research to know that Dale would have many hurdles to jump over and that every transplant patient is different. Little did I know how different Dale really is!

I got to see Dale 4 hours after he got out of surgery. He was responding to my questions. Dr. Nakazatto does not believe in pain medication after the transplant. He feels that he can tell how the new liver is working by how alert the patient is. At this time I do not feel that Dale was in a lot of pain, but I could tell he was a little agitated because he could not move or talk. He was hooked up to a ventilator, oxygen, catheter, and tubes and lines everywhere. They also had his arms tied down so he would not pull anything out.

Dale spent 2 ½ days in ICU. He was then transferred across the hall to 5 East. The second and third day after transplant was the hardest on him for pain. It was during this time they started training us on medications. We had to learn all the names, strength, and the purpose of taking the drug. They start quizzing right away because it can be overwhelming.

On the fifth day after transplant, Dr. N. came in and told Dale that he found 2 pea sized tumors on his old liver. They took an ultra-sound, which turned out fine. They would consult with an oncologist and continue to monitor it.

Dale was told that if everything was going well, he’d be able to leave the 7th day after transplant. On that 7th day I knew right away that there was something wrong with Dale. One of the nurses aides told me that Dale took off between 7 and 8 a.m. She found him outside the hospital where the smokers go with his plastic hospital bag. In it he had packed his medications, his notebook (Dale is a poet you know), and an extra plastic bag. He told her he was going to Canada. When I saw him he started talking about the Russians and bombs. He said we needed to get out of there. By this time I was really concerned. I went to tell his nurse what was going on. I was told that sometimes patients react like this due to lack of sleep, lack of sunlight, feeling of confinement, and /or medications. The next day he was back to normal and he was released from the hospital.

The next 3 weeks were spent adjusting to living in an apartment and dealing with all the medications Dale was on. His incision was healing nicely and things were going pretty smooth. Dale was even walking his 2 miles a day again.

About one month after the transplant, Dale started feeling lethargic. He would sit and stare for hours. He also had a headache. He went in for his regular blood work. Later that day, the transplant team called to let us know that Dale needed to go in the next day for a biopsy. His counts were very high. They said this could be rejection or diabetes. Because of high glucose levels, Dale had to go in for a shot of insulin. They thought this would take care of it. The next day, he woke up with another headache, temp. of 100.1, and feeling very sluggish. We were told to bring him into the Emergency Room. They hooked him up to an IV and took a lot of blood. They found out his blood sugar was high, white blood count high, and his kidney function was not good. They also received the biopsy results that showed mild acute rejection. They admitted Dale to 5 East again.

Because steroids and prednisone can cause diabetes, they treated Dale’s rejection with atgahm. They were also training him to deal with diabetes (which he never had before). To top all of this off, Dale acquired a new pain in his lower abdominal and anal area. They considered this pain neuropothy. They gave him a series of x-rays. He was in such excruciating pain that he would stand at his bed grasping the rails screaming out in pain. Now Dale is not a wimp. He usually handles pain like a trooper. He could not handle this pain. They finally gave him a shot of morphine which helped for about a ½ hour. Since that did not help they gave him some percocet. He finally relaxed and fell asleep. They started treating this with the medication neurontin. The team had only one other patient out of 130 plus that has had this type of problem.

After 5 days on atgahm, Dale was not responding. They had to resort to the most potent anti-rejection medication, OKT3. Dr. John calls it the scud missile of anti-rejection drugs. It has terrible side effects such as: shaking, chills, fever, vomiting etc. Dale got all of the above. His fever was so high one night they had to put him on ice while they were waiting for a cooling blanket. Thirteen days after being admitted into the hospital, the did another biopsy. This showed that there was no more rejection but there was the CMV virus. They upped his acyclovir dose to 4 times a day compared to 3 times a week.

When Dale was done with the OKT3 medication, they let him go back to our apartment. Even though he was out of rejection, he still didn’t seem well. We went in for his regular blood work and he tried really hard to take short walks. After a couple of days of Dale not improving (in fact he was getting worse, labored breathing, weak, nauseous, no appetite etc.) I let the team know. They told me this was typical of CMV. They had Dale come in for a chest x-ray and additional labs. They had to take a more direct route to handle the CMV. I had to bring him into the clinic for a gancyclovir drip for 7 days. After the first day, I had to wheel him up in a wheel chair. During this time his blood pressure dropped real low. They treated this with florinef. As the days went by, he slowly got his appetite and some strength back.

One month after Dale went back in the hospital the team called us to tell us that Dale’s counts were getting better. Even though he was still very weak, we were elated with the news.

Almost three months after the transplant, Dr. N. said we could go home. It was the best news we heard in a long time. We went home on our daughter’s 14th birthday. Feb. 18th

The first thing Dale did when he got home was pick up the hose and water his garden and trees. He had a minor set back in March when he started losing weight again (for a total of 52 pounds), pain in the liver area, no appetite, and nausea. Even though his weekly labs were good, no one could explain why he was feeling this way. I still feel that it was the CMV virus again, though we never proved it. Dale did have to go to UMC for a CAT scan to check things out. The CAT scan came back fine.

Eventually these symptoms went away and he started having severe pain in his fingers and feet. This could be a side effect of the FK506 anti-rejection medicine and/or the osteoporosis he was just diagnosed with. He is learning to deal with the pain while more tests are being done.

What has happened since my Transplant

Hello to all my friends and family;

As some of you know I had a T tube hanging out of my stomach since my transplant. It was a small tube with a cap on the end of it that went into my bile duct. It is put in all liver transplant patients in case the bile duct gets a blockage in it or stops working for some other reason so it can be repaired without having to perform surgery. It is generally left in for six to twelve months and then removed in a simple procedure.

I have not been recuperating as quickly as most transplant patients and have been just kind of dragging since the transplant, no energy, weight loss, and my muscles are very slow in returning.

My transplant surgeon and the transplant team wanted to leave the tube in for a full year but were concerned that my bile duct might be responsible for my slow return to normal so they decided to inject some dye into it and x-ray it to see if it was working right. He also wanted to do another biopsy on my liver to make sure it was still healthy.

The appointment was set for a week ago last Tuesday but something came up and they had to move it back a week. On last Tuesday 6-29-99 we left for Tucson at 4:00 A.M. for a 7:00 A.M. appointment. The test went well and only took a couple hours but we had to hang around till 1:00 P.M. for the results. We went out to breakfast and did some shopping at the many cool shops around the collage and returned for my 1:00 appointment.

My surgeon said everything appeared to be working fine and decided that since we were there he would remove the tube. I was not able to take a bath or swim because of the fear that water would leak into my stomach and being the hottest most humid part of our summer the thought of being able to swim again sounded pretty good.

Several months ago after my transplant I had asked what would happen if I caught the tube on something and it pulled out of the bile duct. They told me it would feel like someone was hitting me in the stomach as hard as they could with a baseball bat over and over again. For that reason I kept a dressing over it so it so I would not have to go through that unpleasant experience.

They had also told me that one in a hundred people had that happen to them anyway when it was removed and I would know it within 30 seconds or so after removal. In my never ending quest to prove that Murphy's law was still in effect I became # 100.

He pulled the tube and I felt a slight pain but good for about thirty seconds. Then the bat came and was replaced shortly with an elephant jumping up and down on my stomach. I lost my breakfast and broke into a cold sweat. They rushed me to the emergency room and knocked me out within about 15 minuets. He had to do reconstructive surgery on my bile duct and bile leaked into my stomach which turned into a mild case of peritonitis, not like the first time a few years ago when it almost killed me. They put a pick line in my neck and in my arm so they could get enough blood into me and antibiotics at the same time. I don't remember anything about the next 36 hours but when I did come around again I was in for a pleasant surprise. My transplant surgeon does not believe in using pain medication but he decided to let me have some this time. My whole transplant and recovery was done with no pain medication.

It sure makes life a lot more bearable!!!!

They were going to let me go home Friday afternoon but a side effect of pain medication is constipation and they would not release me until I had a bowel movement. also I had not had a solid meal yet and they wanted to make sure I could keep food down. It took me till 10:00 P.M. to accomplish these tasks and they kept me till noon Saturday. I am supposed to go back Tuesday to get the one stitch taken out of my neck but if that is the only reason they want to see me I am going to try to talk them into letting my local Dr. do it. I can't see driving 4 hours round trip to take out a stitch I could do myself.

One thing I have learned from my whole experience is that life can be a real challenge with no immune system. A couple weeks ago I got stung or bitten on the back of my hand by an ant or mosquito and my hand swelled up like a grapefruit and stayed that way for a few days. With no immune system your body can not fight of the smallest infection or poison.

Little things that I never gave thought to or laughed at have now become larger than life monsters waiting to try to do me harm, but without the transplant I would have been dead by now so every minute from now on is all extra time I have been given to enjoy my family, friends and my life.

As I close this chapter of "My Story" I am getting ready to enjoy this Independence day with a few friends and family. If your not doing anything stop by and we will burn some meat or just enjoy life in general!

As always, PEACE and thank you all just for being there.

Dale (Fleeb)

Dale France Leeb
Please send all comments to djleeb@uswest.net