Monday, November 16, 2009


Today is my birthday. Everyone who saw me today, or knows me on Facebook, has been WELL aware of this fact for at least a week. I generally make a big deal about ME on my BIRTHDAY. I am 39. For real.

But this year, I gotta say, I am pretty damned happy to be here. Not just here on Big Red with the cat and dumb sitcoms, eating my birthday cookies (and a sandwich) but here. In the big gestalt here kind of way. (Yes, I just did Google "gestalt" and I think it is the word I want.)

Confession: my time horizon has always ended at about age 45. At least, it has since some time during my early illness and diagnosis, when I overheard -- or maybe I was just the "third person" person in the room -- one of my doctors talking about that being the age at which I would be finished with this life. And that became my date.

Of course, this was before liver transplants were done commonly. There were few choices for immuno-suppressive drugs, and not a lot was known about AIH. And that became my baseline.

For some reason I never bothered to update my world view and change those assumptions. Thus my "do before 40 list" and my "bucket list" became synonymous and, sadly, I have done a really poor job thus far of preparing for retirement. I still have a hard time conceiving of being retired... of living that long.

And yet here I am at 39. Still haven't accomplished my do-before-40s (it's a SHORT list) and have started a new bucket list for the years beyond. And I'm happy about that. Plus I got the bonus today of ending one med (the valcyte) and one bloodtest since apparently the CMV is done with me for this time around.

That I have had a fabulous weekend is evidenced by the fact that every piece of silverware I have is in the dishwasher, and that there are bits of ribbon and packing peanuts throughout the living room (cat apparently had a long day). The fact that I have had a fabulous year is borne out by the blisters on my toes, the books on my shelves, the people I love and have seen or talked to over the last week, another file off my desk, and the smile I find at some point during every day.

The fortieth year of my life is going to be grand!!!

Tuesday, August 18, 2009

Misadventures Part IV

The whole not-breathing thing lasted till the following Wednesday. The dt's from all the meds lasted through Sunday. I didn't work Monday but was able to be up and about the next day. I was pretty damned miserable, since I wanted to be active but couldn't really breathe, so no walking.

I managed a follow-up ultrasound that week, and a clinic visit with Dr. V the week after. He was very apologetic, telling me that if he had had any idea that I would be in so much pain he would have prepared me better. I told him that it was okay; we all had bad days and I was sure he hadn't planned such a rough procedure.

What made the difference for me was that, the Sunday after I came home from the hospital, I received a phone call from Dr. V. A dr has never ever called me at home. He was just checking in, wanted to know how I was feeling, wanted to tell me what the test showed, and when he wanted to see me next. I was nonplussed, and very impressed. I do expect directness from my drs, and kindness is a bonus, but this was way cool.

Sunday, August 16, 2009

Behind Door #2...

Approximately 75-80% of American adults have CMV. That's cytomegalovirus, and it's pretty certain that it's a relative of herpes, epstein-barr, and mononucleosis. It lives in the body, happily cooking along and not really showing up in healthy people.

About 20-25% of American adults do not have CMV. That means their immune systems have never worked up the antibodies to fight the virus.

CMV is an opportunistic virus, meaning it shows up when your immune system is depressed for some reason or other, and when the virus is activated, it can cause nasty illnesses -- and, in a pregnant woman, birth defects for her child. It can arrive as the flu - aches, fevers, sore throat. It can cause gastrointestinal distress. It can cause retinitis (and eventual blindness). It can attack the liver, the joints, and I bet it can even get your teeth. It's not generally passed on through casual contact... and it dies very quickly outside the body.

Anyhow, given the percentage of folks who are already positive, versus the percent who are negative, when transplants take place there's a 20 +/- % overlap of positive donors and negative recipients. They give hefty antivirals right after transplant to keep the virus at bay. After that, approximately 20% of the 20% go on to develop CMV.

Guess who hit that jackpot?

I started feeling crummy about two weeks ago, right as my family were all arriving in town for Sarah and Brett's wedding. My arms and legs really hurt, and I was t.i.r.e.d. By last Sunday I couldn't drag myself off Big Red, and slept almost all day. I also had a fever and a sore throat. By Monday I started to feel tight in my chest, and I broke down and called Nurse M.

6:00 Tuesday found me in my favorite University hospital giving all sorts of bodily fluids to the cause. Dr. H saw me and after 30 seconds said "I'll bet you $100 you have CMV." Yeah, like I was going to take that bet. :-) I knew I'd be back in on Thursday for more venous spelunking (soon will have another "recent misadventures" post) so figured I'd get meds then.

Woke up from my procedure Thursday morning to my darling Interventional Radiology docs saying "you are being admitted but this is totally not our fault -- we would let you go home today..." And I just laughed. I found myself in the same room I was in when I left the hosp in April, with the same nurses. Ahhhhh, home.

I got Thursday afternoon "off" and Friday was poked and prodded in various ignominious ways, and received a "PICC" line, which is basically an at-home iv that runs from inside my elbow, up around my shoulder, and stops just short of my heart. This is a quick and efficient way to get meds throughout the body ... with the effectiveness of oral medications on CMV still under scrutiny, fluid is the way to go.

Saturday consisted of lessons from the home health nurse, more visits from the infectious disease docs, and coming home. It will probably be the end of the week before I start to feel better, at least I hope I do by then. I am still sleeping all the time. As of this moment I've been awake for an hour and three-quarters and am longing for sleep. But I'm sure it will work.