Sunday, September 05, 2010
First of all, thank you, thank you! for all your kind words and support. I'm amazed at the strength I can draw from knowing you guys are out there - I really had no idea of the power of community.
As it turned out, they didn't send him home the other day. They kept him over night one more night, and he was transferred to the transplant center - by ambulance, and I met them there with my own vehicle - early Friday evening. Since it's the weekend, they're not doing much besides getting him stable and in the best condition they can, and doing some preliminary testing. The main screening, typing, and evaluating will be done Monday or Tuesday when the regular staff is in.
After a brief kerfluffle over room availability - it's college weekend - I'm staying in a nice hotel/motel/inn/conference center about six miles away, getting the hospital visitor rate ($40/day) with all kinds of discounts and a shuttle service. Being the good Scotsman that I am (I crossed out "skinflint"), I brought a loaf of bread, a jar of peanut butter, some Swiss cheese, a container of mayo and a bunch of tomatoes and apples from home, so I don't need to buy food. Hey, why spend when you don't have to?
That's pretty much all I know at the moment. I got 12 - *twelve*! - hours sleep last night - that's more than I've had in the last week combined, so I feel a lot better. Now it's time to go back to the hospital. All I really do is sit in the chair (I also brought a bag of library books) and make sympathetic noises, but I think it does both of us good. And I have a 22 year old daughter at home holding down the fort, so no worries there. We'll see what happens next.
Thursday, September 02, 2010
On Monday, husband was reasonably well when I left to go shopping at noon. Got home four hours later and he was very confused and shaky. We decided to take him to hospital, but he opted for an ambulance instead. (We got two ambulances, almost a third, five cars, two pick-up trucks and a motorcycle - must have been a slow night at the ol' Emergency Center.)
After spending six hours in the emergency ward, he was admitted. He was pretty much of a mess - high blood ammonia, dehydration (apparently all the fluid that should have been in his bloodstream is currently residing in his legs and abdomen) and general liver failure. It's a little country hospital, though, much better at dealing with broken arms than failing livers, and after an absolutely amazing amount of paperwork and telephoning, he's being transferred to a transplant center in Rochester. He's still at the community hospital but will be transported there in an ambulance (the local ambulance corps has never made such a long transfer before - they're all excited. "Road trip!") as soon as a bed opens up.
So I have to be ready to leave at five minutes notice, and this can happen at any time, 24 hours a day. Your basic "hurry up and wait". Luckily, I have a daughter here to keep the home fires burning while I get this transplant deal underway. Both daughters are still willing to give him part of their livers (mine's got a few miles on it, but I'd give him some - hell, right about now a month in bed in exchange for a major organ sounds like a pretty sweet deal) but we won't know until the transplant people do their type-and-screen thing whether that's possible.
Since they're doing this evaluation on an in-patient basis, it looks like no matter what, he won't be home for a while. This is, oddly, a bit of a relief. I hadn't noticed how much of a strain it was to be on constant guard of his taking a turn for the worse and to be making care decisions that, honestly, I had no business making.
But at any rate, I likely won't be around SP much - very little extra time at the moment (although the hospital does have bootleg-able WIFI.)
I'm not especially worried, or at least not yet. It's a relief to have him be someone else's responsibility, have them responsible for decisions, have them administer care, and now we're actually underway on some treatment. He could most certainly still die at any time - he's a very, very sick man - but he'll be in one of the best transplant centers in the US any minute now, and I couldn't ask for more than that. And Rochester is only two hours from here, so I can go back and forth regularly.
I'll report back as things progress. Please keep us in your prayers.
That was at 9:00 a.m. Now, a mere hour and a half later, all that is in question. Apparently there is still no bed in Rochester, and since he seems to have stabilized and, after four days, is at a statistically higher risk of catching something in the hospital, they now want to send him home. And of course, if they send him home, Rochester won't do the type and screen as an inpatient - they'll do it on an outpatient basis, which means car rides with him in the passenger seat, vomiting in the car (traditionally into the glovebox ) hotels that I can't find or afford, and a few million other things I'm not one bit ready to cope with.
But first they send him home again. Where I go back to checking on him every hour, being the nurse, dietician, drug czar, warden, overseer, housekeeper and general in-charge-of-everything life and death person (in addition to my usual duties as veterinarian and kennel lord, all-around handyman, legal secretary, landlord, and field medic for all things animate and inanimate. (Not to mention my actual, official job that I do for income.)
And he'll do as he pleases, and we'll be back in here in a week or two. Only next time I'm liable to be in the next bed.
This sounds horribly whiny and selfish, doesn't it? So add guilt and shame to the list, because why wouldn't I want my sweetheart home again with me?
Friday, August 27, 2010
I'm adjusting. Husband on the liver transplant list is becoming the new "normal", and I've talked daughter #1 into working only three days a week so she can give me a hand around the house and farm - there's too much work for one person, and if I have to pay someone, it may as well be my daughter as some local yahoo (forgive me.)
So today I spent a l-o-n-g day of serious cleaning - I totally love that mop thingee that you plug in and it emits steam!! - and I made some real progress. Even cleaned the kitchen enough to make some potato-leek soup with our own veggies.
At the end of today, I downloaded my BodyMedia armband data and entered it in the appropriate SP places - I haven't done that in a week, and it feels good to be back to paying attention. Even if I don't change my activity or diet, just entering the data keeps me aware of my goals.
I spent an hour (actually, closer to two hours) catching up with Spark Buddies' doings and team activities, and came up with a couple new ideas to jumpstart my program without making all that many changes. Sadly, I've determined that my foot just isn't ready to cooperate with the C25K quite yet, but I haven't given up that goal - just postponed it until I do a bit more healing.
I've always dealt with adversity by making A Plan - any plan, even a silly, unrealistic one, is enough to give me some comfort and change my focus. Also, I know that I feel best when I have a project that I can dig into, preferably literally - heavy physical labor, indoors or out, balances my tendency to live too much in my head. Also, that delicious tiredness at the end of the day ... even the occasional sore muscle ... there's no substitute for honest labor.
So I've make a couple plans, for myself and my weight goals, for my house, my business, my farm, my husband - you name it, I've got it laid out, and I feel much better for it. I've shaped my eyebrows and flossed my teeth. I've got my armband, my week's worth of menus, and my shopping list, and my day-planner with Time For Myself written in in ink! Yep, I'm ready to resume living my life!
Thursday, August 26, 2010
Satchel Paige is one of my heroes, and I don't even like baseball.
Among his many wise (and wise-ass) remarks was, "Just keep runnin'. Don't look back. Something might be gainin' on ya."
So today, while I try to wrap my mind around what' going on in my life in general, I asked my dearest friend Katrina www.secondsights.com/ to do a reading for me. In part, it read:
Outcome is The Star - Set a goal and work toward it, letting nothing distract you from the outcome. Don't worry about how you're going to get from here to there. Set the goal and start walking. If you are going from Virginia to California, all you really have to know is that California is West and keep walking West. You'll get there. It's nice to know about the terrain and climate of the states in between, but really, the main idea is to just keep walking in the direction of where you know the goal lies, even if you don't know anything about the journey in between. By all means, walk. You don't have time to sit still.
So maybe I ought to get on this weight-loss-and-health-gain thing. I admit I've been doggin' it for a long damn time, paying lip service to The Cause and wearing the BodyMedia arm band and logging the data, but not really putting my heart into it (literally or figuratively.)
Tonight, honestly, it just seems like one more thing I have to put on the To Do list. But there's always tomorrow. And tomorrow is another day. (That's not Satchel, that's Scarlett O'Hara - but she had the right idea there.)
And now, before I inadvertently invoke any other quote-worthy folks, I'm calling it a day.
Wednesday, August 25, 2010
Some of my SparkFriends know a little of my backstory with my husband and his health challenges, most don't. If you're interested, here's the short version:
John was in a car accident a bunch of years ago - punctured his spleen, lost more than half his blood volume and had to have multiple transfusions. Unfortunately, he did this on the "wrong" side of town, where St. I-forget-who Hospital used to buy blood by the pint from whoever was willing to sell it - usually not the best, healthiest folks. Anyway, he got a transfusion that was tainted (at least this is the best guess we can make) and, twenty years later, was diagnosed with Hepatitis C.
Still, he stayed healthy (and meanwhile developed back problems so complicated that his Xrays are featured in a couple of textbooks now) for another decade or so. He was offered the Interferon/Ribaviron treatment, but for many reasons (mostly a very low long term success rate for his genotype, after a long and very painful treatment) did not take it. Last summer he started getting some edema in his legs, and it's been steadily downhill from there.
I'll spare you the details, but he got connected to an internationally respected doctor at Mt. Sinai in NYC. We saw him in March, and he was fairly positive - gave John a different main diagnosis (cirrhosis, yes, but caused largely by Non-Alcoholic Fatty Liver Disease, rather than Hepatitis C - which he still has, of course), a different treatment protocol, and a different - positive - prognosis.
John's been having more and more problems, largely with the edema in the legs and ascites (fluid build-up in the abdomen), but also some hepatic encephalopathy (cognitive problems due to liver disease) and feeeling worse and worse. It's slow, but progressive. So we went back to NYC and saw the doctor again. This time he looked at him, prodded a little and suggested he be evaluated for a liver transplant immediately (in Rochester, though - closer to home and with a better chance of finding a donor.)
So that's where we are now. I haven't given up - not by a long shot - on either my husband or myself, but I may not be around much, and if I am, it may be sort of hit-and-miss. I have a huge amount of house and farm stuff to deal with (especially with hay to get in and winter to prepare for) and now have to be especially supportive of my husband, and ready to do whatever he needs done. A positive side of having to take better care of his needs is that his diet is moderately high protein (100 gms/day), lower carb (and only "quality" carbs) with little sugar and just about no salt - exactly what I need to lose weight.
I'm willing to shelve most of my artistic pursuits for the time being, like writing my book(s) but I can't devote myself 100% to the care of someone else. I almost wish I could, but I'm just not made that way. I need some alone time to read or walk or draw or just sit. Doing morning, noon and night for someone else will make me crazy, and then I can't help either of us. So Im trying to find that balance. And to manage ... eh, difficult to explain, but I get so upset with him sometimes, so angry, but then I realize how ill he is, and feel so terribly guilty and sad, and that doesn't help either.
I'm so very tired of tightropes and eggshells, but that seems to be what's underfoot at the moment. Wish me luck, kids.
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