Well, my Mom said that my blog is “a little too happy” these days for what I’ve actually been going through. The fact is, I’ve really been focusing on the good because a) it’s been a really pretty autumn on horseback and b) the good seems more sharply in focus now that I’ve hit a bump in the road. That bump comes in the form of yet another lung infection having damaged the donor lungs, this time resulting in more loss of lung function. We remain hopeful that there will be moderate gains, but we do consider this drop to be somewhat permanent (if we are to be realistic). I did have pneumonia, it did cause scarring, which caused inflammation, and may have set off rejection, which was stopped by an i.v. steroid intervention. I can still ride, I can still sing. I cannot ride as aerobically at the moment, and I’m less inclined to dance around on stage presently, but I can STILL DO the things I like to do!
Apart from being unsettling, it has been a frustrating eight weeks. Since the moment I first started to feel a decline I have been so proactive about seeking care. I am very angry about what I feel to be neglectful attention on the part of the post lung tx coordinators. Yes, they saw to me, but I had to nag them every step of the way, had to fight for appointments, nag them when results went astray or samples seemed to get lost. Phone calls, desperate ones from me, would go unanswered. A different doctor every week made continuity of care difficult (they are all connected but each have their own slant on the situation, which was confusing. I didn’t know whether to hope or to grieve from one week to the next) I even made a surprise appearance (unscheduled) at clinic because I was acutely feeling worse and they were simply not answering my phone system messages. The Docs and breathing lab staff I feel are always thoughtful, and I’ve really gotten to see and feel their caring. Otherwise, I’ve been quite angry. The post-care system is a victim of its own successes and that means too few coordinators for too many patients. I know mine works hard, sometimes calling after hours, but it often was a let down. So I’ve been rather pre-occupied with the situation, always fighting for answers, and therefore, my escapism at the farm has been all the more wonderful!
Because the steroid bolus really dropped my immune system down, I elected to pro-actively keep myself from going INTO the dusty stable for a time. Not even in a mask, since frankly I was finding it difficult to walk indoors in a mask mid-way through treatment anyhow. Wonderful friends and family have been grooming the horses and saddling them for me. I’ve been hanging out in the stable yard, and then just climbing up and riding off in the fresh air. This is especially hard for me because a) I really love all the bonding/grooming time with a horse, and b) I HATE to lose even a little of my independence. But this will only be temporary. I’m feeling a lot stronger after having ridden every day last week. I can again run up a couple flights of stairs, all huge gains from where I was there for a few weeks. And so, you see, the good days are good, and while I do have bad days, the good ones feel so sweet! I’m still scheduled to go on my mini singing tour of Quebec in November, and I’m looking forward to singing loud and proud. To show you how the good days are, I made a couple of video with our new helmet camera from my vantage point on horseback riding with Tom. For those of you who think “aw, the horse just does all the work,” Well, WRONG! You think it is easy to hold on to a galloping horse?! I hope you’ll like the videos and find it a hopeful reminder that all is not lost! I do! I