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Virginia's Kidney and Liver Transplant Experience

Virginia suffered kidney and liver failure as a result of polycystic kidney disease. This genetic disease causes numerous cysts to grow in the kidney. Other organs, including the liver, can also be affected.

Virginia first had her kidneys removed at another local hospital in anticipation of a kidney transplant. A few days after that operation, Virginia became jaundiced due to bile duct blockage, and the doctors determined she needed a liver transplant as well as a kidney transplant. Virginia came to the hospital of the University of Chicago Medicine to wait for a donor liver and kidney.

I was taken by ambulance to the emergency room at the University of Chicago in early December. Eventually, I was put in a private room. Prior to transplant, I had to be quarantined for my own protection so that I wouldn’t catch any infections.

"The doctors and nurses on the transplant team are very warm, very down-to-earth people."

I waited less than two weeks for a donor liver and kidney. During that period, I was on dialysis, and being taken for tests, including lung function and liver tests. I became progressively worse during that time. I wasn’t keeping food down very well, and I went down to 98 pounds. I was still yellow from jaundice and deteriorating rapidly. I was very miserable going through dialysis, having all the staples from my previous surgery and the bile duct tube and collection bag.

Then at 1 a.m. on December 18th, a resident woke me and said they had found a liver and kidney for me. A team of three was flying downstate to look at the organs to make sure they were OK. When I heard this, I was very excited, but also sad for the person who had died and was donating her organs.

Time went very slowly for the next several hours. At 5:30 a.m. I still hadn’t heard back from the doctors. So, I called the nurse. The resident doctor returned to my room at 6:30 a.m. and said not to worry. The nurse washed my hair, and I called my dad to tell him the good news.

At 11 a.m. I heard over the PA: “Room 466 to OR.” That was my room! I said "Halleluiah" I never thought I would be saying "Halleluiah" for surgery. Then, I began packing up my clothes and other items.

I think I left my room around 11:10 a.m. They wheeled me out and took me to a holding area. I said to the nurse, "Now, everything is going to be OK. I’ll see you soon." I remember looking at this little Christmas wall decoration of a teddy bear with a cap on it. There were also other people in the holding area, and I remember thinking "Gee, all of these people are waiting for surgery. I wonder what type of operations they are getting."

It seemed like I was in the holding area for a long time because I was lying there doing nothing.

Right before they put the anesthesia mask on in the surgical room, I asked for a Kleenex to blow my nose. That’s the last thing I remember.

One of the nurses told me I was put on anesthesia at 11:45 a.m. The anesthesia stopped at 8:30 p.m. so the surgery lasted more than 8 hours.

"My advice to other people facing a transplant: Don’t give up and try to have a positive attitude."

The first thing I remember after surgery is waking up in intensive care. My dad told me that the surgeon had come to see him after the operation and said everything went well. My dad had hugged the surgeon, and the surgeon had hugged my dad. The doctors and nurses on the transplant team are very warm, very down-to-earth people. They don’t put themselves on a pedestal. They see you as the miracle. That’s what I like about them.

My surgery was successful. My liver weighed 19 pounds from all the cysts that had grown on it. A healthy liver for me should have weighed 2.5 lbs. The surgeons said my old liver hung over the container they used to deliver it to pathology.

The first few days after surgery, I was quite uncomfortable. I was on pain medicine yet didn’t have much pain from the surgical incisions. It was my back that hurt a lot. I wasn’t allowed to drink any water or eat anything at first. I was only allowed to suck on a sponge. I also had a catheter.

Finally, they took out the catheter and I was able to urinate. I said I would never complain again about going to the washroom. I was so grateful that I could go.

One day, they discovered blood in my stool. They did an endoscopy to see what was wrong, and they determined that I had a bleeding ulcer because of all my surgeries. They gave me blood transfusions and medication to help correct the problem.

I was in the ICU for three to five days. I was moved to a regular room by Christmas Eve. Slowly, things started to improve. I still needed four pillows for my back. I was drinking a nutritional supplement because I had trouble eating.

I was also very weak. I was afraid I couldn’t stand on my own feet. The physical therapists came to examine me. They took me in a wheelchair to the stairs. I remember looking at those stairs and feeling like a little kid looking up at a mountain. They had to put a strap on me, and I would walk up two or three stairs. That was monumental for me at the time.

A doctor came to see if I would need to go to a rehabilitation hospital. But they determined that a physical therapist could come to my house after I was discharged.

I had one rejection scare. The eighth day after my surgery, my blood lab numbers went up, and the doctors said that I would need a biopsy to see if I might be rejecting. That was scary. They said don’t worry about it because rejection is very common. But to me it was very scary. I called my dad and friend and asked them to pray. The next morning, the doctors came in and said my numbers were down again; so, I didn’t need the biopsy. (I was told that rejection episodes are highest during the ten days following surgery.)

Eventually, I began getting my appetite back. I had cravings for cashews and chocolates and would ask my father to bring them for me.

A few days before being discharged, the doctors took me off morphine. The post-transplant nurse also asked me to read a book about all my medications and the signs of rejection. I was still too weak to sit up, so I asked my dad to read the book to me.

The post-transplant nurse gave me a quiz on what I had read. She asked questions about the medications I was taking. Then, she gave me a written schedule that helped me see when to take all my pills.

Sixteen days after my double transplant I went home. For six weeks, in addition to the physical therapist, a home care nurse and aide visited me in order to draw blood, change dressings, and wash me.

It’s been more than eight years since I had my transplant, and I’m doing well. My advice to other people facing a transplant: Don’t give up and try to have a positive attitude. It also helps to join a support group for transplant patients. It helps to go to the support group and hear other peoples’ stories. It makes you realize you’re not alone. Nobody goes through this alone.

September 2006

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