Rehab Floor, Coming Home, and More Rehab
After a month on the transplant floor, I was sent to the rehab floor for two weeks. I had lost too much muscle and I needed a more intensive physical therapy. My family would not be allowed to stay overnight in my room as they had done on the transplant floor. This made me extremely nervous! They were free to visit me frequently, and on occasion, would even accompany me to therapy. I would have three hours of therapy a day. This would consist of group therapy, occupational therapy, and physical therapy. Therapy was very hard. I still had very little muscle. It seemed like every time they wheeled me to therapy, I’d suddenly get hungry but it was too late to eat. I was allowed to go home when I felt confident enough to get up the two flights of stairs at my house. By the second week, I felt confident enough.
Coming home was bittersweet. I was so happy to be in the comfort of my own home but now I was away from the safety net that was the hospital. I came home with a cane. I needed several breaks before I made it into my house, but I made it. The stairs were challenging but I was able to pull myself using the railing as I ascended the two flights. My family helped me fill my pills, set up my nebulizers, and do IVs. Being a CMV mismatch, meaning my lungs came with CMV but I previously never had it, I needed a 3-month course of Ganciclovir IV. The infusion was to be done 3 times a day. This protocol helps to keep CMV dormant. I had to nebulize an antifungal and an antibiotic as well. I hadn’t recovered all of my muscle, and if I sat on the ground, I would need help getting back up. My hair was starting to fall out due to the trauma I had endured. My face was rounder than ever from all the steroids. These two things alone really made me unhappy with my appearance. I was still trying to process and wrap my head around everything that had happened. It was challenging to fill my days and I looked forward to bedtime. The next five years would prove challenging.
It was recommended to me that I do pulmonary rehabilitation to further get my muscles in shape. Three times a week, for an hour or more, I would go to a local hospital and do pulmonary rehab as an outpatient. I would do this for the duration of 3 months. There I would use the exercise bike, the treadmill, a paddling machine for my arms, and a few small weights. My vitals were consistently monitored to make sure my body could handle the exercise I was doing. I really enjoyed the woman who oversaw my care there. She had been one of the therapists that came to do my CPT before my double lung transplant. She was with me the day I had a bleed and went to the hospital. I would go on to do pulmonary rehab many times over the following years. I would ask my doctors for a script for pulmonary rehab after major hospital stays where I would lose a lot of muscle and feel really deconditioned. More recently, it would not be covered under insurance because my pulmonary function tests were too high.
(taking another break with my niece, after getting up the stairs)
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