Sometime in January I had a transplant clinic appointment. I can’t exactly remember the date now, but I remember the appointment very well. It was the beginning of what could have been the end.
I did the usual tests – spirometry, a six-minute walk etc. I was now not just on eight to 10 liters of oxygen. I needed 10 liters of oxygen pretty much all the time; even to walk the maybe 15 to 20 feet to my bathroom. To go for a slow walk required 15 liters.
The funny thing about increasing oxygen, especially when it happens over years as it did for me, is that you adjust to it. It just becomes your normal. You might get annoyed by it, but somehow it becomes this thing in your life that just is there. So, although I was clearly very sick at this stage, I didn’t feel sick. I felt tired a lot, but not sick. I didn’t feel pain (thankfully). I didn’t feel weak (even though I needed a lot of help with household activities so clearly I was). I just adjusted. I coped with the waiting for a new lung by trying very hard not to think too much about it. The best therapy was playing with Finley, my dog, or working on things for the HPS Network. It all gave life this sort of normalcy in the midst of something that was clearly not normal.
So, I was taken back when the doctor told me I should start thinking about coming into the hospital to wait for my transplant. I knew this often happens, but I had dreaded it. How would I continue to cope sitting in a hospital room I knew I might never leave? Although at this stage I was pretty much stuck at home because my massive oxygen needs made it hard to go many places and not worry about running out of air, I felt I was okay at home. Surely we weren’t there yet?
The doctor and transplant coordinator explained that there was an upside to being in the hospital – it would give my lung allocation score a huge jump. The chances would be better that I’d get another call. I felt like they were trying to make a bad situation sound better. Besides worrying about how I would cope with things in the hospital, I was worried about being able to walk around and exercise. I worked so hard at pulmonary rehab and I didn’t want to lose ground when, if I were at home, I knew I’d be able to exercise and move around. (When you are an inpatient, they don’t let you go to the normal pulmonary rehab classes at the gym. A therapist has to come and see you. So, by definition, the sessions are not as long nor do you have access to all the gym equipment.) I knew I could lose ground quickly and was worried that this would, in the end, not serve me well. I also worried about being in the hospital in the midst of flu season. I had put myself on a kind of voluntary germ lock down, only going to places I had to go and wearing a mask as much as I could. How did it make any sense to go to germ central – a hospital – any sooner than absolutely necessary?
I went home and thought it all over. I didn’t do anything for maybe a week. I just sort of let the idea soak in. Finally, I concluded, the decision was a matter of strategy. Everyone would like to think that the transplant process is one of complete fairness and protocols, but for me, it has been a matter of strategic planning for years. Planning had given me an edge. If I went into the hospital, my score would go up. I had not had another offer since Thanksgiving, and clearly things were getting worse. Perhaps the best strategy was to bite the bullet and go in, even if I felt I wasn’t really ready.
The next few weeks were some of the hardest of the wait. On the plus side, it gave me a chance to prepare to go into the hospital, but on the down side, it gave me a chance to prepare to walk through those mechanical swooshing doors knowing the odds were better I would never walk back out.
My sister-in-law helped me get an attorney to put my “affairs in order.” Not much to do now. I literally own pretty much nothing. After 10 years of being on disability, there is absolutely nothing left. Still, everyone needs things like medical powers of attorney etc. I wrote careful instructions for my brother, who would most likely be in charge of managing my affairs should I be too sick, or too dead, to do so. I wrote out instructions for taking care of Finley that were way more extensive than any of my financial or legal documents. I’m his mama, and I wanted to be sure whoever was caring for him (there were several ways that might go down) knew all of his little quirks, likes and dislikes, favorite toys etc.
I gathered up HPS work I needed to do and knitting I wanted to have with me.
There were days I looked around my living room and everything seemed so still and normal. The neighborhood noises, the way the light came in through the windows or the way Finley brought me toys when I stopped working – it was all just so crazy normal. Yet there was this count down occurring for that day I’d check myself into the hospital to wait. It was something like being in a crashing airplane plummeting toward the Earth, yet no one seemed to notice.
I had a lot of dark, but to my mind practical, thoughts. Sharing them wasn’t something I felt like I could do much of, however. I felt people would say things like, “Don’t be negative.” or “That isn’t going to happen” or “Have some faith.” I knew if I heard those things I might really lose it.
When my friend Elsie went through the same thing, I remember she had such a strong need to be practical, to be sure all the details were taken care of, but it was hard for the people around her. I’ve seen this a lot with various HPS friends. Not acknowledging what the sick person waiting for a transplant is going through isn’t really helpful. It might feel easier, but it isn’t helpful. We, as the patients, know there aren’t really always answers. Yet, there may be things we need to do or say so that we can relax and cope and play this mental game of chicken until that precious organ arrives.
A week before I was to be admitted, my mother came to help out. She wasn’t thrilled about my luggage situation. I was taking a LOT of stuff to the hospital. My friend Donna Appell had given me some excellent advice. She suggested thinking of being in the hospital as just a change in geography. When I was admitted, I should do what I could to make my hospital room my own. I should establish a routine for the day, just like I was doing at home to cope. So, that is what I did. I packed to turn my hospital room into my office and art studio. The thing I dreaded most was being stuck in there unable to do anything but think of my ever quickening demise. If it took packing three suitcases full of a bunch of stuff it turned out I’d never need to make it possible for me to walk into that hospital, then that is what it would take. Tough luck - HPS Washington DC office was moving to Inova Fairfax Hospital and that was the way it was going to be.
During that last week I had a couple of close calls that brought home my decision was the right one, even if it were a hard one. There were a few times my oxygen dipped so low when I was coughing, that I had to put a high flow cannula in my nose from an oxygen tank at 15 liters, and a mask on my face from the concentrator at 10 liters, just to get my oxygen saturation number to come back up again. It was scary and getting a little dangerous. Several times I wondered if I shouldn’t wait for the next clinic appointment to be admitted. Perhaps I should call the coordinator and go ahead and go?
The day finally arrived for our appointment and admission. The appointment wasn’t until the afternoon, so I’d left several last-minute things to do that morning. My coordinator called, however, and asked if it would be possible for us to come in that morning. I wanted to stomp my foot and say no – this day is hard enough for me already and I’m working with a plan here. Yet, I’m just not that kind of girl. I said we’d be there as soon as we could pull together these last-minute items. It was a blessing that she rushed us. I didn’t have too much of a chance to think about everything. I would have probably been ready by noon and spent the next two hours holding Finley and crying. Now, I didn’t have time. We rushed out the door. I remember looking back at Finley as I shut the front door to lock it. He was looking up at me the way he does every time I leave. Suitcases had come out, so I know he knew something more than the routine was up. But, he looked up at me with his beautiful eyes and all I could think of was how it might be the last time I would ever see him. You can’t explain to a dog what is happening. I was worried he’d think I just abandoned him if I never came home.
The taxi was waiting. The suitcases were being loaded. I couldn’t fall apart. I didn’t want to make it harder on everyone else. It was time to leave.