Monday, September 14, 2009


I wish I could say we were doing better. I'm stressed out and a mess. Not helping anything. Will is short-of-breath with any activity and sometimes at rest. I don't know what his lung functions are. His saturation in the upper 80s and low 90s. Lower at home than in the hospital -- and I don't know if that is progression, or the home monitor is wacky, or it's just variable or what. He's tired; wiped out feeling.

At the same time, he is incredibly steady through all this -- not freaking out in any way that he communicates to me. When asked says: I'm sure it's temporary. And he feels some better in the evening. Right now walking around eating left over pizza; dealing with the dog.

The thing is, rejection-related damage is not temporary. It's permanent.* The question is how much of what he is experiencing is that and how much is congestion or whatever that will improve with treatment. He's still on iv antibiotics for the line infection. He is scheduled to be seen on the 28th, but I would be so much happier if he could be seen on the 21st since, to begin with, we don't even know if the steroids worked to halt the BOS process. There are other treatments** he could talk with his doctors about -- all pretty strong. None very well known or proven. The most successful one as far as I can tell is a chemotherapy drug. I feel my antsy need to act, to do something, even when there's nothing to do. As if I could do anything to change any outcome. Research. Call the clinic and make sure the follow up is actually scheduled. Fret. Cry.

September was scheduled and known in advance to be a killer month at work for me. Clients want a year-long project finished two months early and we don't really have a choice. Even without out that pressure, there's only so much (not much) I can push out, send on to others, or not do. It's a small company. I own part of it. I have to keep these clients happy and earn new ones: that's how we stay in business and keep the people who work for us, well, working. It's a terrible job for our situation really except that it pays pretty well, is secure (all things considered), and has good health insurance. It holds some promise for a prosperous future, which, honestly, doesn't really seem that important right now. I have a trip next week that I'm terrified to go on and there really is no one else to do it. I miss my old government job, when you could just take a month off if you had too at the drop of a hat (I did when my father died unexpectedly), and while it wasn't considered a great thing to do, nothing bad really would happen to you. Your job wouldn't evaporate while you were gone the way clients can. And no one else would be out of work because you needed the time.

My old house, which we rent out, has renters moving out and some problem with the floor which requires a bunch of worry and attention even though Grandpa DM is handling most all of it in terms of finding the workers, and figuring out the specifics of the problem. It's going to cost a bunch of money that we don't have.

The worst part is I really have no idea if my worrying is out of proportion to the situation or not. I know only this: BOS is what most lung transplant patients who go past 5 years eventually die from. The transplants just don't last forever is the bottom line. Everyone knows this and accepts it in their minds. . .but my heart has been slow to follow. BOS can stabilize and plateau and be fine for a while and then act up again. We were in a plateau for about the past 3.5 years. Now it's acting up. We hope for another plateau, but I have no idea if we're going to hit one, or what it will look like, or how long it will last.

That's really not the worst part. The worst part is thinking of dear Will having to go through all this decline again. Having to think about the specifics of that, for real, as a result of where we are now. As if once wasn't enough. As if the fair price for 8 - ? years is this. Honestly, I cannot think about it without totally shutting down. I can't even begin to write about Liam.

*Some studies say that high does of azithromycin, over time, might recover some function. Will's on that, and has been, except that when I insisted he go to the hospital back in mid-August the not-his-regular-doctor reduced his does. That's, apparently, when all this started; something I didn't find out until today. He's back on his regular, high dose now and has been for about a week. I will lose sleep over this for the rest of my life. Other antibiotics in the same class also are being studied, with some promise.

**This is a partial reference; a section of a google book. I have to try to find the underlying studies. . .. So many of the articles and studies aren't easily available; or you have to pay for them. I think Will's doctor would give them to us, but I have to remember to write them all down and ask. It is really hard to make myself shoehorn in all this research when the last thing I feel like doing is looking up and reading terrifying things on the Internets.


Lisa said...

I'm so sorry Elizabeth. I don't know what to say to help, and really know that there isn't anything. But I do now that you are an amazing woman. You are probably juggling much better than you imagine. The juggling is hard, very hard. So please, try to cut yourself some slack. I hope that the doctors can give you some answers and that Will starts to feel better soon. I am hoping for a very long plateau for you. Please let me know if there is anything that we can do!



IVF 40+ said...

Hi Elizabeth. So sorry you are so stressed. Without the talent or knowledge to do anything I can only offer you my love and support.
Thinking of you

Kristen Gehrke said...

Elizabeth, you don't know me, but I've been following your blog for some time now. You are always in my prayers. Be strong....

Pundelina said...

Oh I hope the BOS plateaus again. I'll keep your family in my prayers. So hard.