MELD, Musings, and Comments
I found out Tuesday that my MELD score remains 18. My doctor has upped my coumadin dosage again, in another attempt to bring my score a bit up. I spoke to the transplant coordinator at the Big City Hospital to get my score, and during the conversation she indicated that she felt it was important to get my score up as quickly as possible. I’m starting to think I have to talk with Dr. Liver more seriously about possible/probably prognoses for this.
I’ve noticed that no one, not my doctor, not the Socialist, not my sisters, not my friends, feels comfortable talking about anything other than a total recovery. It’s strange, but I think I’m more comfortable acknowledging that there is a chance that this might not work out than those on the sidelines. I don’t know if they just don’t want to talk about it with me, or if they don’t want to discuss it at all. Regardless of the reason, it makes it difficult to do some of what I consider to be necessary planning. I need someone to hold a copy of my will for me. I need to make clear what my wishes are regarding a funeral. I need to find out if there are certain items in my possession that need to be passed on to a specific person. There are lists of people I’d like contacted, and a few journals/publications I’d like to carry a notice. I’m not expecting any of this to be necessary, but I still like to keep my bases covered.
I then remember with a guilty conscious how my father tried to talk to me about his impending death a few weeks before he succumbed to lung cancer metastases to the brain. I was just as self-conscious, embarrassed, and reluctant to talk to him as the people around me are to talk to me now. I almost felt it was disloyal to him to not believe so fully in his ability to recover that I’d be willing to discuss what happened if he didn’t. It’s been nearly fifteen years, but I wish I could go back and handle that differently. I should have taken my cues from him, and discussed it if he wanted to. It would have been more than a kindness or a courtesy; it would have been a real service to him. Some missed chances are unrecoverable though. Now I understand.
Liver Waiting list: 409
Liver Status (Inactive): 41
Liver MELD / PELD <10: 243
Liver MELD / PELD 11-18: 113
Liver MELD / PELD 19-24: 9
Liver MELD / PELD 25+: 3
I’ve become obsessed with checking in at the UNOS site. I don’t know why, since the numbers don’t change daily. I think it has to do with my own personal comfort level. The more discomfort I’m in, the more frequently I check, as if verifying the numbers could make time move faster. There remains a minimum of twelve people ahead of me. I don’t know how many others are scored an “18”, nor how long they’ve been on the list, but it probably isn’t unreasonable to think the about twenty of the 11-18 bunch are an 18. I’ve been officially listed since October, so most of these will have been waiting longer than I, putting them ahead of me on the list. So, at a guess, that’s 32-ish livers that go elsewhere before I’m number one in the queue. Of course, since the queue constantly changes as everyone else’s MELD scores change, all this musing is meaningless anyhow. Tomorrow will bring different numbers with different musings.
This morning I woke up to four degrees Fahrenheit (that’s -15.5 Celsius to you non-American types). Sorry, but four degrees isn’t a temperature; it’s an obscenity. Four degrees with gusting wind makes you want to curl up in front of a space heater with your favorite kitty, sipping a hot chocolate. Four degrees demands an open hearth fireplace, a hot toddy, and flannel pj’s with a nice polar bear print. Four degrees is pamper-yourself-and-go-into-hibernation weather. It is not get-into-the-car-and-drive-yourself-to-work weather. That fact did not stop me from getting into the car, gripping the sub-Arctic steering wheel, and driving myself to work.
I continue to have periods where I have reservations about getting my hair professionally colored on Saturday. I remember my first reaction to putting a rinse in my hair (you who have been following the Salampsest saga for a while will remember the “Oh my God, I’m I red-head” entry from way back when). Then I look at myself in the mirror and realize it isn’t such a bad idea after all. My hair has become frizzy, crispy and prone to irascible fits. If this works, the ego boost will be worth every cent I sink into this little escapade. If it doesn’t … well, I’m already pretty badly off anyhow. I can’t possible come off looking worse than I do now, unless my hair falls out completely. As someone said about me in a public comment to another diary a long time ago, I have a “radio face” (as in “unfit for television”). While that might be a slight exaggeration, it won’t hurt to try and improve things a bit.
I was surprised that the Socialist wasn’t more pleased with my getting Christmas week off, but I guess that’s so far in the future it’s hard to take seriously at the moment. There are a lot of things that could happen this year that could end up canceling our Christmas plans. I guess I shouldn’t start counting unhatched chickens just yet.
Comments received related to my last entry:
From: Froggy Tue, 21 Jan 2003
Hi! I just read your latest deardiary entry and thought I would try emailing a comment…am not sure this will work but here goes….
I am thinking maybe you have inspired me to do something with my hair??? Would feel so good having a new hairdo. I hope your new color turns out great.
Also, I am glad you will finally have a Christmas off. *smile*
froggy
From: TraumaMama Date: Tue, 21 Jan 2003
We are getting some great oranges too! Nice, big, full of flavor and
cheap!
Bummer on the comment deal, but this works.
Shame on whoever is not playing fair.
From: Lil Date: Wed, 22 Jan 2003
LMAO!
Think it will help?
Don’t let them make a poodle out of you.
Seriously, keep us posted on your new look. It’s fun to change now and then. You can always go back to haphazard if the new look isn’t you.
The clothe$ have got to be the biggest drawback. Replacing all your underwear cannot be cheap.
Don’t worry, Lil. There’s no chance I’ll be poodle-ized. I don’t doctor them, and I won’t join them. As for the clothes … you are so right. Especially since I have no real basis of figuring out what size of unmentionables I need. I have enough different sizes to fit every version of the burgeoning bloat now.