Hospital

 I've been back in the hospital since the 19th. Brought in with pneumonia. That seems to have cleared, but I still can't stand or walk without extensive help, and my blood pressure plummets when I sit or stand. So not going home yet. Instead, they're planning to send me to rehab for ten or twelve days to get stronger and regain bladder and bowel control and maybe deal with my broken arm. Oh that.

Let's face it. I'm a mess. Cancer has not been kind to me. But the decision is to stop chemo and go to hormone treatment that I bring from home to rehab. Cancer has spread throughout my spine and to leg and hip bones. But it could be worse.

Time for an Update

 

I'm getting better! I think I'll go for a walk!

Welp, It's a little hard to describe what my recovery has been like. I am doing better. I can walk, usually without the assistance of a cane or a walker, but I'm pretty unsteady on my feet and weak on my right side. I've been doing physical therapy exercises, but it will be weeks/months before I get my strength back. Oh well!

Meanwhile, I'm having dental work done that will go into next year -- and cost me more out of pocket than hospitalization. This is kind of criminal of our health care System and I know it affects a lot of people and causes a lot of misery. We have dental insurance, too. As do many people. But the out of pocket costs for dental care with insurance can often be astronomical.

I checked the bill for the rehab hospital stay (10 days) and was surprised. It was over $92,000. All of it was paid by insurance. Wow. The initial hospitalization (13 days) was about $52,000 of which I owe about $1,500. Not too bad. There will be some follow up bills, maybe another $1,000 for ambulances and so on. But the dental work -- with what is considered "good" insurance -- will cost me almost $8,000 out of pocket. I can just about handle that, but what of people who can't? It's crazy.

Overall, I think I'm lucky in many ways and a fool in many ways. I neglect my health and dental care all the time, and yet so far I've been able to get through -- with a lot of help, including that of my wife for whom there is no comparison. It's a learning experience, an opportunity, here in my dottage, to still come to realization, "enlightenment" and greater compassion for those not so lucky -- or foolish as the case may be. 

Yes, I am getting better. But oh my goodness, this has been the toughest one yet. 

The Hospital 3

 So let's explore a little bit, okay? A tale to tell...

I started noticing back problems around the first week of July and went to the ER the first time on July 18 where I was treated primarily for constipation as I hadn't (at that time) had a bowel movement for 11 days. Too much information? Well, hang on, there's more. I listed lower back pain as part of the problem that brought me to the ER and I got an injection of some pain killer (torodol I think) that took care of it right away. But there was no effort to find out what was causing the back pain. Went home, cleared my bowel, got and got over Covid, continued to have back pain, went on about my business as best I could.

Come August, the pain was getting much worse and lasting much longer. I was self medicating with Tylenol and Motrin, each of which sort of worked some of the time and together proved to be a potent combination that pretty much utterly failed. I was on the phone periodically with advice nurses that didn't know what to do, and eventually called up for an appointment with my PCP which was essentially futile as his schedule was booked for weeks. I asked for someone sooner, and got someone via video visit much to my surprise, someone who prescribed what he said were the strongest non-narcotic pain killers he could. Well, much like Tylenol and Motrin, they sometimes worked but often didn't and I recognized that my condition was deteriorating rapidly. What to do?

Video doc said "go to the ER, stat." I hesitated, one because of cost, two because I was once again constipated -- this time for weeks -- and what if they only looked at that? Again?

Go anyway. So after waiting three more days, I called an ambulance as I couldn't sit in a car and I couldn't drive. Went to the nearest ER some 40 miles away where I've had bad experiences in the past. 

I was taken right to an exam room and seen by an NP (I think) within maybe 45 minutes. For some reason, he suspected something given the pain I was having and the duration of my condition (then for a month and a half and getting worse the whole time.) He sent me for an MRI and maybe an hour after the procedure, he came back with a diagnosis: osteomyelitis and discitis needing immediate hospitalization and treatment. There were more tests run in the ER, and then toward evening I was trundled by ambulance to the main hospital downtown (five miles or so) and put in a room on the 4th floor that resembled a nice hotel's "jr suite." It was large, private, quiet, had a comfortable seating area, a large bathroom, but sadly no view as the window looked onto an inner court that I couldn't see.

I was for all intents and purposes completely bedridden. I was given pain killers, laxatives, antibiotics, and who knows what other medications; I was taken for bone biopsies, xrays and other tests, and just before I was discharged from that hospital (after 13 or 14 days) a picc line was installed to make the IV medication at my new hospital easier to administer.

I was being transferred to a rehabilitation hospital nearby where I would continue to undergo treatment for osteomyelitis and discitis but also be subject to physical therapy and occupational therapy so I would be able to get around well enough to go home, likely in 10 days.

A non-emergency transport got me the few hundred yards to the rehab facility where I was put in a double room, not as nice, not as large and with less view than at the first hospital, but adequate for the needs of the moment. For the first few days, I didn't have a room mate.

Right away, the rigors of therapy began. They called it "evaluation."

I was very weak but very willing, and soon enough was at least partially ambulatory, though only with a walker. I was taken for exercise almost every day, usually twice a day, and gradually became able to get around though not without struggle and not without pain. In fact, despite the opiod pain medications, the pain was sometimes so bad I had to stop. The other issue was that my blood pressure would fall dangerously low during or just following exercise. It was a mystery and remains one, though medications and dehydration were/are the suspected culprits.

Many liters of normal saline were administered. I was admonished to drink more water. Still my BP would fluctuate wildly and sometimes reach dangerously low levels. Then it stabilized lower than my normal but not severely so. As long as it was relatively stable, it was considered good enough.

As it got closer to my discharge date, my progress seemed insufficient to release me. I could sit up, stand, walk, move my limbs with and without weights, could do simple tasks like getting in and out of a car, I could wash myself, dress myself, and so on, but I lacked stamina, and I frequently needed assistance. And if I went home, there was a question of how I would receive IV antibiotic treatments as it was suspected that we couldn't get a home health aide to come out to our place in the country.

Sure enough, that proved to be the case. For several days it wasn't clear whether I would be able to go home or would have to go to a skilled nursing facility. I continued working toward going home though, and had faith that the antibiotic problem would be resolved. It was. Ms. Ché would be trained to do it at home. 

Through all of this, I was boosted, cared for, helped, encouraged, "tortured," and inspired by an amazing staff wherever I was being treated, at both hospitals and the ER as well as another facility where I will have to go once a week to pick up IV supplies, have blood tests run, meet with the doctor, and be evaluated for progress.

I can't thank them enough. 

I'm still not well. Far from it. But bit by bit... getting there. Now to find something to eat...!

The Hospital 2

Just got home from three weeks+ in two hospitals being treated for osteomyelitis and discitis. I know there is a lot of chatter on the internet that heath care in the United States, especially since the advent of Covid 19, is a tragic joke. For some people, I know it is. I have seen or experienced some of the worst aspects of the industry -- shameful, tragic, and I'd go so far as to suggest evil. Something you can hardly imagine if you weren't witness.

And yet... welp, here I am after three weeks plus in two different hospitals being treated for serious bone infection and disc ruin in my lower spine, pain running wild, bedridden so long I could barely stand or walk when I was transferred to rehab, and truly I cannot thank the doctors and staffs at the ER and both hospitals enough for their kind and generous care, their quick admission to astonishingly nice room at the first hospital (quiet, too 😴) and extraordinary care at the second rehab hospital that got me back on my feet and able to get around, pain controlled, and set up to go home where antibiotic treatment continues with the lovely and talented Ms. Ché will be doing IV push daily. There's a lot more to the story, but I'm still processing it all. This experience is a counter to almost every single hospital experience I've had as a patient or advocate my whole life long. And counter, too, to so many horrid experiences we hear about so often. How? 

Astonishing.

The Hospital

I've been hospitalized since August 28 with a serious bone infection affecting my spine and hips. I've been essentially bedridden the entire time, although I can get up and out of bed for short periods with help. It's not so much getting up and about that's the problem as that my blood pressure plunges when I get up or do any exercise. Sometimes it's so low I practically pass out and would if I weren't able to lie down in bed promptly -- which so far, I've always been able to do.

I spent about a month at home attempting to wrangle with whatever was going on, but my condition kept worsening and it couldn't be accurately diagnosed without proper tests which could only be done at the hospital or ER. So finally I called an ambulance and made the 40 mile journey to the nearest ER where alarms started ringing right away. Something was wrong, bad wrong, and after the test results started coming in, they thought they knew what it was. An infection, possibly cancer, that would require extended treatment.

So, here I am, waiting for more tests scheduled for tomorrow, and eager to get out and be whole again. 

What a drag it is getting old.

Note on a Friend

A friend here in New Mexico has been enduring a health crisis for months now. She's been in the hospital with a blood clot that was discovered last Friday during pre-op for a hip replacement. Needless to say, her hip replacement is on hold.

She's on Medicare and has been through the usual series of frustrations, delays, incompetence and lack of communications that have long characterized American health care, and at this point, she's just beat. She's been barely able to walk since Thanksgiving when she was hospitalized the first time with these issues. Complicating the situation with her disintegrated hip joint is sciatica in her other leg, making it almost impossible for her to sit for more than a few minutes, let alone to lie down. She wasn't treated for that until she absolutely demanded that something be done. She's been in pain and misery almost constantly.

She was looking forward to hip replacement as she at least would be able to walk again, but because of the blood clot in her leg, they couldn't do it. She'll need to be on blood thinners for at least a couple of months, then off of them for at least a month before they can do any surgery, and it may well be longer -- much longer. She said that at least in the hospital she could sleep better than she could at home.

It's a sad and aggravating situation -- for our friend most of all, but for her family and friends as well. She's not alone, thank goodness, as she has family in town and friends throughout the area, but she's lived alone and has been independent for most of her adult life, and being dependent on others as she has to be now is driving her nuts. That and the pain and the frustration and being unable to walk more than a few steps at a time.

We're helping out as we can. It isn't all that much, but it's something. We've been through this kind of thing our own selves and taking care of another, so it's not all that unfamiliar. You go into a kind of auto-response of "Oh, this is what you do, this is how you get through it, etc." It's surprising how easy it is to slip back into that routine. Or maybe it's hard-wired.

At any rate, it's taking a good deal of our time, so posting may be light for a while.

Another cliff looms...

OT: The Hospital -- parte dos

So she came home on Thursday evening, weaker than anything, with an N/G feeding tube down her nose and a Foley catheter to boot. She'd had a "cardiac incident" the night before that required heroic intervention -- oh, just call it a heart attck, but they didn't want to do that given that her discharge was already set up and scheduled, so "incident" it was, and what they did worked. Not a problem.

We carried her into the house on a sheet; she was too weak to stand, let alone walk. She'd been in the hospital two weeks, during which time she was never allowed to even sit up, let alone get out of bed. She wasn't allowed to eat or drink (the infamous "NPO") and for five days, she had no nutrition at all. Finally, they started feeding her through the tube, said she had to have a PEG in her stomach to feed her -- she couldn't swallow, you know. She'd been tested.

Ahem.

When it was pointed out that she'd been eating and drinking normally at home before she was hospitalized, and that she'd been eating and drinking normally the first two days in the hospital (before the angiogram and the stents), they were sore amazed. "It cannot be," they insisted. "She's so thin. She's obviously not been eating or drinking for months."

Sigh. So they tested her again. She didn't swallow the ice fast enough. FAIL! The pudding went down fine. FAIL! But the juice... she choked -- actually coughed briefly as it was going down. EPIC FAIL! "She can't swallow, it's proved now, shut up. We know what we are doing."

No. Actually, you don't. She hadn't had anything in her mouth for days. It really takes some gall to claim she's not doing it right when she has to remember what "it" is. Damn. She's 88 years old. You try to remember everything when you're 88.

But "gall" and hospitals are close acquaintences I've been told. And fifteen/twenty years ago she had her gall bladder out when they did the appendectomy. Made perfect sense.

Thin? Well, they weighed her in her hospital bed, 53.5kg, pretty darned normal for a woman of her age and size. Obviously starving to death, right? In fact she'd lost about 20 lbs of fluid build up caused by congestive heart failure (which is the source of most of her current health problems.) Her limbs are atrophied due to lack of exercise, cussedness and old age, but she's got plenty of meat on her torso. Somehow they missed that.

So she came home, too weak to even hold her head up, and we got her in bed, as comfortable as possible, and she said, "I'm home?" We said, "Yep, you sure are!" And the biggest smile you ever saw came across her face, just pure joy, and we figured she'd be... OK.

She had a doctor's appointment at the doctor's office (her primary physician rather than the hospital resident) the next day, and we went through the same routine to get her to the car and out to the clinic. Her doctor, who's been treating her for more than twenty years, took a brief assessment, looked at the voluminous paperwork in front of her, and asked: "Has she had anything to eat or drink since she's been home?" We said, "Some sips of juice. No problem." The doctor asked her, "Do you want to keep that tube in your nose?" She said, "No, it hurts." "OK," said the doctor, "it's coming out. It's gonna be uncomfortable, but I'm taking it out." Pull-pull-pull, out it comes. Doctor asked her, "Do you want a tube in your stomach for feeding you?" She said, "Do I have to?" Doctor said, "You don't have to do anything you don't want to." She said, "Then no, no tubes at all."

OK. It's set then.

We all discussed what's going to happen now. No more hospitalization unless she breaks her hip or something. Hospice care at home, she eats and drinks as well as she can, no more heroic interventions if she gets a heart attack, stroke, or pneumonia. She gets well or she doesn't as the case may be, she takes her meds, the nurses come to her, the doctor makes house calls, and we take it a day at a time.

She got 100% better right that minute. "Thank you!" she said. "I love my doctor!" Well. We all cried. It was just amazing.

We went back home. She was still very weak, but she obviously had more spirit and energy than before, big, big smile the whole way.

Nurses came, we explained the new routine, she was happy, they checked her out, treating her for this and that, change to hospice care, no tube feeding.

She's been home since the 16th, eating and drinking like a "human being" like she says, taking her meds, she even stood up, with help, yesterday. "I'm determined to walk again," she said. Yes.

The transformation from the hospital -- where she was getting progressively worse and they wanted to keep her for another 3-5 weeks -- to home, where she is progressively getting better every day, and she is so much happier, is startling.

So.

That's the story.

OT: The Hospital

A close and elderly relative has been taken to the hospital where she hasn't been doing all that well for the past week. The schedule at Casa Ché is such that my posting at Ché(WhatYouCallYour) Pasa may have to be light to nonexistent for the duration.

Just a note on hospital care in America. Those who have access to regular care -- as opposed to emergency room only care -- like those on Medicare, are sometimes lucky. The problem is that too many hospital procedures, and too many hospital personnel are keyed to "codes" which too often have little or nothing to do with and are incapable of properly caring for people.

We've had periods of utter nightmare this past week dealing with "codes" rather than care. And we've seen the consequence of "care to the code" and not to the person.

Sigh.