Skip to main content

I want it, and I want it now

Patience may be a virtue, but it is certainly not a skill of mine. I am just about at my five-month lungaversary. They are constantly telling me that everyone’s recovery is different. You can’t compare your recovery to someone else’s. Intellectually, I get that. Really, I do. Emotionally, however, I’m like a toddler. I want it, and I want it now. And why shouldn’t I?

This transplant has been hard work. I’m blessed that I got a lung at all. So many of my good friends did everything right, waited and waited, and the lung never came in time. While I’ve beaten the statistics consistently throughout my life, I am well aware of all the post-transplant statistics. I am well aware of all the complications that can happen. I’ve been given a chance. I’ve been given more time. I don’t want to spend it waiting. I’ve got a lot to do with this new lung.

Thankfully, (knocking on wood) the new lung is working pretty good right now. It isn’t up to full capacity by any stretch, but my spirometry is holding steady, and even trending upwards at a slow crawl. I’ll take that! At least it is moving in the right direction. I haven’t needed oxygen, and the times where I might be on the bubble needing oxygen are fewer and fewer.

My legs, however, remain a problem. I think they are improving, but it is hard to tell. One day I can walk a mile, and the next it’s a struggle to make it around the block or stand at the sink doing dishes for longer than 10 minutes. I don’t quite get why it can vary so much from day to day.

No one has to sell me on the importance of exercise. I’m sold on the concept. I was never a big fan before, admittedly, but my two years in pulmonary rehab convinced me it is the key, not only to a decent quality of life pre-transplant, but to recovery post-transplant. It seems, however, that my legs never got the memo.

I’m feeling frustrated. Yes, I know, everyone’s recovery is different, but at this point, I feel like I should be able to do more than I can in a more consistent way.

Sometimes I need a reminder about how far I’ve come, even if it isn’t far enough. This morning I was looking for a document in my e-mail from my transplant coordinator. As I searched through the e-mails, there was this record of back and forth about all the problems that have come up along the way. I have to remember I’ve only been out of germ jail for about a month. It wasn’t quite two months ago I was fighting falling white blood cell counts. Even if I can’t walk as well as I should, there has been progress.

Even so, let me be cranky about my lack of progress. Let me complain and moan and be frustrated. It isn’t that I like feeling this way, but be glad that I do. It’s the frustration and the high, maybe unreasonable, expectations that keep me pushing. Be glad I’m not happy to continue to cruise around in my wheelchair (as fun as it is for someone who has never been able to drive.)

Last night as I was lying in bed feeling so frustrated, I was doing leg lifts and talking to my legs. The language I was using to them isn’t family friendly. I was just trying to find a way, something I could do, to make those muscles work. I’m still waiting to hear back from rehab. I can’t wait to hear back from them to work on this problem though. So, I complain, and grumble, and feel frustrated and cranky – and so I move.


Popular posts from this blog

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Just waiting: A continuation of my transplant story…

Photo: This is me the week before the transplant. The one with the roses was taken on Valentine's Day. My sister-in-law gave the roses Ryan had brought her to me.

To be honest, I don’t remember much about the time I spent in the hospital before my transplant. I’m not sure if that’s because it was pretty boring and routine, so there’s just not much to say – or if it is some kind of self-preservation maneuver my brain has done to shield me somehow.

After the big rush to get to the clinic early, we spent several hours in the waiting room with my luggage as if we were waiting for an airplane at the airport. It turns out the big rush was due to a hospital policy that the clinic couldn’t request a bed for me until I was actually there. The hotel Inova Fairfax Medical Center was packed to the gills, and they wanted my name on the waiting list. It was late afternoon before a bed became available. Looking back, I’m amazed at how calm we were sitting there. Perhaps we were compartmentalizing…

Family hunting

I’ve always had an interest in genealogy. I haven’t done anything about it really. Never had the time I guess. Perhaps it’s because I’ve always been a fan of studying history. Finding ancestors somehow feels like a personal connection to the past, as if the DNA populating my cells has some sort of time travel awareness of what has gone before. Of course that’s crazy.

When I was diagnosed with Hermansky-Pudlak Syndrome my interest in my roots, especially my Puerto Rican roots, intensified. Maybe it was the realness of mortality or the connection between my newfound fascination with genetics and how it connected me to my family history.

For years I’ve thought about whomever in my family tree might have had HPS. They would have lived so long ago that they wouldn’t have known what HPS was. It wasn’t really identified as such until 1959. My grandma Cockerill, whose father was from Puerto Rico, talked about relatives in Puerto Rico she heard about as a child that had died of tuberculosis. C…