A Transplant Journey- Recovering in the Hospital

Recovering in the hospital is an exhausting affair. Anyone who has ever had to stay knows that it’s not a place for rest. It wasn’t until Monday night that I had even a decent-ish night of sleep. Between vitals and medicines and the gas pain I built up because I hadn’t been moving much, sleep escaped me. In fact, late Sunday night/early Monday morning, I got so sick that I had to ask for nausea meds and a vomit bag. I prayed and prayed for relief because I could only imagine the pain my abdomen would go through if I had to vomit.

I had my first PT session Saturday afternoon. I was in the most horrible pain trying to get up the first time. I was in tears. Then I walked across the room and sat up in the chair for about an hour and a half. The sitting up was so hard. But after that I started getting up to go to the bathroom, and I found it easier and easier to get up and move. I had a couple of accidents over the course of my stay, and I was so embarrassed. So, when I was able to get up and have a bowel movement, I felt free. The more I moved, the better I felt about moving to solid food.

For my first two meals, I was on a liquid diet with a choice to have solid food for the second. I added some pudding as the gas was still stupid and I didn’t feel like solids. But Sunday morning I moved up to eggs and other less dense foods. I made the mistake of choking on my eggs. I hadn’t sat myself up high enough and ate too fast. Coughing was so painful. I was crying, trying to get the egg out of my throat. I stuck to soup and sandwiches, moving up to a denser meal like chicken on Tuesday. My mom brought me some broccoli cheddar soup from Panera Sunday night; it’s a great comfort food for me.

For me, the hardest part of the experience, other than the pain, was the catheter. Even though it was ballooned and couldn’t come out, it could be yanked and hurt like an MFer. This did happen once and then I was extra vigilant. Walking was rather uncomfortable, as you might imagine. It seemed forever until Monday morning came, and they removed it. They had to make sure the kidney was working and had been monitoring fluids to a certain threshold. We would still monitor when I used the toilet. Almost immediately after they removed it, I had to pee on my own. The nurses were impressed. That night I was walking and getting up well enough that I could go to the bathroom and walk around to relieve gas on my own. This made my independent streak feel good: no more calling for aid to go pee!

My team was serious about making sure I felt my best and had everything I needed. I had told everyone that I was due for my sub-q Immunoglobulin replacement therapy. They took this seriously, and we did a comparable amount of IVIG with fluids, Benadryl, and a steroid. I had forgotten exactly what IVIG made me feel like. I got really hot that day between the treatment and the steroid, and my headache was worse. In fact, I hadn’t truly appreciated how much less the side effects are on sub-q. The doctor said my sub-q would be fine in the future. Though my nurse and I were concerned about how sub-q would do while my abdomen is healing, we really didn’t like the idea of putting so much fluid in the area. I have reached out to my immunologist to see how he feels about me going on IVIG for a few months.

On Monday, they figured I would be discharged the next day, and they started the process of education and preparation of my new and old drugs. I spoke with a nutritionist who talked about my diet. I was delighted to learn I could have all my fruits again since high potassium is not an issue. Although I can no longer have sushi, blue or soft cheese, or certain herbal substances. The blue and soft cheese I have already tried to cut out because of my Primary Immune Deficiency but the sushi hurts. I love sushi. We talked about a more balanced, less sodium-centered diet. Then I talked with several pharmacists about my anti-rejection meds as well as a doctor about wound care and a kidney transplant coordinator about my schedule once I moved to the hotel. I got lots of paperwork.

I felt pretty good, just hurting, when my doctors came by Tuesday morning. I was sitting up on the “sofa” in the room. The doctors were glad about that. My numbers were good, I was peeing and pooping. I was ready to go. I had my first hearty meal, my family got me packed up, and we headed to the Hilton at UAB. I was tired and hurting, but so glad to be in a real bed. Time for the next part of my journey to begin.

Audrey

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