Back into the “Real World”

Being such a fragile patient so recently discharged, my pulmonary team, the surgeons, and my coordinator decided that I shouldn’t leave the Madison area any time soon. On March 13^th, I was sent out into the “real” world to live at a hotel. Since I was still unable to eat normal food or drink liquids because of my vocal cord paralysis, I needed to stay in a hotel room with a kitchenette so I could prepare my own food and drink. We were fortunate enough to find a clean comfortable room in a good part of town, where I lived until I had to be re-hospitalized on April 6^th. It had only been about a week since the final two chest tubes had been removed, and I began having a great deal of difficulty with fluid retention in my lungs. I was increasingly short of breath, and my lungs had a small amount of air around them. These circumstances were obviously NOT conducive to the immediately spectacular outcomes to which I had aspired.

So on the 6^th, I went back to UWH, where my fluid levels were managed until I was back on track to recovery. The doctors also had to tweak some of my medications in order to boost my white blood count, and to control my blood thinners. It’s common to need to switch or re-dose transplant medications, and it’s always a balancing act between how the body reacts and how the meds affect it.

Until April 14^th, I stayed in the hospital in order to navigate the bumps in the road that needed to be addressed; afterwards I returned to the hotel in which we’d been living until I was FINALLY deemed safe to return “home” home to Iron River (called such since so many other places have unfortunately become like other homes to our family) on April 17^th. This was not to last, much to my dismay; by April 24^th I was having difficulty breathing again and my oxygen saturation was dipping rapidly. I rushed to Iron River’s local hospital, and was promptly set up for a helicopter air ambulance ride. When I arrived at the UW Hospital, I was put back on the ventilator in the Trauma & Life Support Center (TLC) for the FOURTH time. Given enough time and some changes in medications, my lungs began to cooperate again, though, so that I was able to be moved to the “normal” part of the hospital where I had stayed in the initial days of my transplant (the B4/5 unit).

We thought I was out of the woods, but we were incredibly mistaken. Apparently, at some point after Mother’s Day, I took a real turn for the worst. I began coughing up blood and needed to be moved BACK to TLC and put on the ventilator for a 5^th time (the pattern gets pretty monotonous here). This time, however, my body was laid face-down in a prone position in an attempt to take some of the pressure off of my exhausted lungs. I was kept this way from May 15^th through the 17^th while my family and doctors prayed that I would make it through another bout of illness.

I recovered eventually, and was moved back to the general care of B4/5 for a few days. After I was released THIS time, I moved into a wonderful place called the “Restoring Hope Transplant House”. Almost like a bed-and-breakfast for those who are involved in the transplant process, the house was a comforting place to regain some normalcy in my new life. It would be much too difficult to describe how incredible this house was/is, so I will simply note that I caught glimpses of the great life to come while living there. When I was allowed to leave Madison again and make a go of it in Iron River (June 16^th) for the second time, I really missed those who run the house because they were my family now.

In order to spare some of the tedium of the revolving door narrative of my time in and out of the hospital, I’ll simply note that I’ve only been home to Iron River on three separate occasions since my transplant was completed in February- while I’ve been in the hospital SIX times, if I’ve counted correctly. Each time I’m hospitalized, my doctors edge a little closer to understanding what is going wrong just when I believe I’m improving. However, it seems that before I can fully recuperate (or even partially regain some significant measure of health) I am knocked down again by some unforeseen complication. Such has become the way I live, but only for now. Anyone who is familiar with bilateral lung transplants (especially for those with Cystic Fibrosis) tells me that the first year is hell, but after that things do improve and life is truly miraculous. I cling to that promise every moment that I’m awake.