Monday, September 20, 2010
The "inoperable tumor" that made him a non-candidate for a liver transplant appeared virtually out of nowhere. In fact, it appeared following a request for an MRi on a Friday that wasn't fulfilled until the following Tuesday. Reason? Radiology had it listed as already having been done that Saturday morning.
I'm the last person to be a Conspiracy Theorist or anything, but I do know that people make errors. So I sent this whole package of information off to my favorite doctor, the one at Mt Sinai, and he said, essentially, "Hmph. Give me a minute" Five minutes later I got an email from another guy at Mt Sinai who is apparently the top liver cancer doctor in the US, bar none, and he offered to review the case for me if I could get him the CDs with the CT scan with contrast. Rather than send the most current ones (that I have doubts about) I sent the ones from two weeks ago, at our original hospital. He should have them tomorrow and by this time tomorrow night, we should know a)if my husband has liver cancer and b)if there's anything to be done about it.
Is this a bereft woman grasping at straws? Maybe, sure. My husband is my soul mate, and we've had thirty years together. I love him well beyond reason. Yes, I will survive without him if I must, and I"ll do a fine job of it, but I'll be damned if I'm going to lose him to a clerical error.
Tune in tomorrow.....
Friday, September 17, 2010
SO, it seems that after all this poking, prodding, perforating and peering into every square inch of the poor man, my husband is not a candidate for transplant after all. We've been in one hospital or another for two weeks now, and finally they're sending him home. He could live a couple months, a couple weeks, a couple hours. Whatever. We're going home.
I have no idea when or even if I"ll be able to face the loving community here. I hope I can bring myself to be back - if I do, it'll probably be under a different name. I don't know anything right now except that I'm grateful for all you guys have given me. And I don't have any intention of using this as an excuse to either drink myself into oblivion or eat my way into a new size range (unless its smaller.) I do know I have to take care of myself, and I intend to do that. As soon as I figure out how.
Many, many blessings.
Thursday, September 09, 2010
John is in the solid organ transplant (did you know that kidneys and livers are considered "solid", but hearts aren't? Neither did I.) unit at the hospital. He's been visited by representatives of many departments - social work, psychiatry, financial counselors, nutritionists (special nutritionists for liver transplant folks, not just a regular dietician), and anyone else you can think of - and had every imaginable test, had every body part peered into and prodded. He's had fluids taken out, and fluids put in. And we still don't have any definitive answers.
I guess that's not quite fair. The way it works is that all these folks record all of their impressions and those, along with the various test results, are discussed on Friday when The Transplant Committee meets. They will decide whether or not he should be officially listed for a transplant (he almost certainly will be.) Liver transplant candidates are given something called a MELD score (Model for End-stage Liver Disease) ranging from 6 (less ill) to 40 (gravely ill), obtained from a particular combination of lab results - his is a 29, middlin' tending towards bad. The MELD score is what determines how near the top of the transplant list a particular patient is, and to some degree, what sort of transplants may be considered.
But all that comes later. First he has to be officially listed - until that happens, there can be no discussion of possible outcomes. So he gets tested, and I get an education in the mysterious ways of Medicare and its "doughnut holes", Supplemental insurance plans A through F, Medicare Part D, high protein/high calorie diets (which has unfortunate implications for my own diet progress) and a host of other things I was perfectly happy not knowing about.
I've been holed up in a local Inn and Conference Center. Yesterday I asked them to find me a mini-refrig and a microwave, and today I went out and stocked up on microwaveable food, so now it's got all the comforts of home - more, even, since at home no one comes in and makes my bed. I loaded up on library books before I came out here, so I can entertain myself - and now I've caught up with the Kardashians and their trials and tribulations, too.
I keep wanting to make lists and plans and all that sort of thing - organize both my life and my future as best I can - but I've found that after sitting in the hospital for eight hours a day, plus or minus, I'm pretty much brain dead. (We won't talk about taking a full-size pick-up truck with an 8' bed through the circular parking garage - I'm seriously considering an epitaph that goes something like: she was flawed, yes, but my God that woman could park!)
Thank you so much for all your kind words, suggestions and support. I am continually surprised at what a loving, supportive community this is, and am eternally grateful.
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?
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