Anniversary -- Escaping institutionalization

This Tuesday, March 6, was the one-year anniversary of my returning home from my four-month hospital stay. What makes the date so important is that my insurance company tried very hard to have me sent to a nursing home after I'd been at the rehab hospital for two months. I was progressing with occupational and physical rehab, I was attempting to wean off the vent, and I was learning how to speak with the trach and ventilator. I was gaining weight -- up to 92 pounds from my low of 75 when I entered the ICU in November 2005.

Had the insurance company gotten it's way, I would have gone to the one nursing home in the entire Twin Cities they considered "in network" and accepting of vent-dependent clients. And I firmly believe that would have led to my death -- quite possibly in this past year.

From the beginning of my medical crisis, my parents and I had talked about how we would try our best to adapt to my changing needs -- the increased need for skilled assistance, the steep learning curve for the vent, trach and feeding tube, the medical bills threatening their financial security as well as mine. The insurance company assigned me a case worker. The hospital social workers helped us begin to navigate the system for state and federal aid. I signed over the title of my van to my folks, an act that terrified me because of how necessary and tenuous being asset-less appeared to my survival. (It's back in my name now, but at the time it was suggested as necessary.)

While I was busy at the rehab center with the minutiae of movement and breath, my parents were working to secure a home health agency and nursing care with state funding approval. Then, one morning, my Mom got a call from that insurance company case worker.

"I've got good news!" she said. "We're moving Kay to a nursing home that's closer to you so you won't have to drive so far to see her! The home is sending someone to assess Kay today!"

This is a person who knew we were working hard to get nursing coverage for me at home. And I don't know how long the insurance company had been planning to drop this bomb, but because I didn't have a telephone in my room (or, really, the ability to speak into it), she was basically telling my Mom the bomb was about to be dropped on me. My parents say they raced to the hospital -- a 90-minute drive -- to keep it from looking like they had decided to ambush and abandon me.

When I was in ICU at first, I was intubated with the breathing tube in my mouth and down my throat. For various reasons, including the Thanksgiving holiday and some scheduling around it, I was intubated for about three weeks and conscious for all but the first couple days before surgery to install the trach at my neck. Intubation by mouth is very painful on the jaw and tender throat. And frightening. During that time -- November 2005 -- I shifted emotionally from wishing I could die and stop the misery, being overwhelmed by the small kindnesses of people and the company of friends and family, and compulsively wondering if this was leading to the end. I was sure it was not, despite my on-and-off despair. I've had pneumonias that felt very deadly and like I might be rattling my way toward death, but this felt like a living transition that I would survive.

And yet, three months later, after the hardest-working, most character-building time of my life, when my parents rushed to my room at the rehab hospital to tell me the insurance company was planning on sending me to a nursing home, my absolute first private thought was, "So this is going to kill me after all."

That's not just drama. I've made a study of how institutionalization leads to the abuse and death of disabled (and elderly) folks -- especially those using ventilators. Like we feminists follow the state of reproductive choice, I have followed the freedoms and lack of them for disabled people in institutions. Abuse and death in institutions has been a theme, along with the basic immorality of warehousing people, in small activist publications like Mouth and Ragged Edge for decades.

As details about this particular facility I was slated to enter became known, it became clear to everyone I talked to at the rehab hospital that being there would likely endanger my health and most definitely halt and reverse specifics of the work I'd done in physical therapy.

As it happened, the one person at that nursing home responsible for assessing incoming inmates was away on a holiday in the tropics and did not visit me that day the insurance company woman said he would. My parents were able to break the news to me, and there would be a weekend reprieve. We learned more about the home in that time -- this home that none of the doctors, nurses, therapists, or RTs that I quizzed at the rehab hospital had any familiarity with. They couldn't recall sending any other patient there, though that was possibly due to a name change, I don't know.

Here are some things I learned about this nursing home I narrowly escaped being sent to, from my parents' on-site tour and my doctors' communication with the facility:

There was a vent wing with about a dozen people there using ventilators to breathe. When my parents visited in mid-afternoon, all these people that they saw through open doors were stuck in their beds.

I was slated for the last room at the end of the hall, as far as you can get from supervision and assistance.

There was no internet access anywhere available to inmates. And no TVs in the rooms. Patients were expected to provide their own if they wanted something to do while immobile in their beds. I suppose this is true of most nursing homes? I don't know.

There was a dining room, but when my Mom asked the home rep if I would be eating in it, she was told it was doubtful. Because of the vent, the woman said, unless I had someone of my own to assist me, I would be staying in my room for meals, and likely for everything else.

Much of the population was warehoused homeless people, probably mentally ill as well as formerly indigent, whom no other place would accept. My parents deduced that a young woman (okay, middle-aged) who cannot walk and is stuck in bed on a ventilator at the end of a long hallway without the power of speech might be vulnerable to physical attacks from mobile, minimally-supervised people with mental issues of their own.

There were RTs (respiratory therapists) on staff but all of them were off-duty every day from 3 p.m. until the next morning. (With my body adjusting to the trach and vent at that time, I was experiencing frequent "mucus plugs" that completely blocked off my airway and required immediate suction relief -- all of these events occurred for me at rehab during evening and night times. More than a dozen times I experienced these plugs, which often hit without notice. Once, I blacked out completely while the RT worked to clear my airway -- and this occurred with a night-duty RT who came immediately to my vent alarm from a desk just a few yards from my bed.*)

The ventilator I would be required to use would not allow for any weaning and would not be portable on my scooter.

I might not be allowed to use my own scooter, which in any case, would be of limited utility without a portable vent.

There was no physical therapy available to help me maintain or increase my strength, which I'd been working on daily to rebuild.

This was the only "in network" option my insurance company was giving me. Without home nursing assistance yet in place, the rehab hospital would not allow me to go home, but the insurance company expected this place would be suitable. My parents were so afraid for my safety and health that they were planning to take turns sleeping in the nursing home room with me, fighting whatever policies might prevent even that. The home care agency we were working with was racing to hire nurses, but expected it would take three weeks to a month.

It did take a month to get the nurses for home care -- and even then, only partial coverage. In the meantime my respiratory health took a little dip, likely because I was crying quite a bit from all this. Concerned, the rehab hospital doctors would not release me to the nursing home, the assessment dude never showed up, and one day, quite suddenly, the insurance company called the social worker and completely relented with the institutionalization plan. I'm sure this is because I had people: my parents to speak for me when I literally could not and wouldn't have had the energy or heart anyway, doctors and RTs who I was awake and conscious enough to build a relationship with so that they perhaps fought a little harder for me in a battle they faced with insurance companies daily. I had resources to keep me from that nursing home I believe would have caused my death. Other people do not.

This one-year anniversary reminds me of how very afraid I was to leave the hospital and the trained professionals behind for my parents' newly-learned suctioning skills and nurses we newbies would have to train. I'm home and happy, though unemployed and baffled as to how anyone who has to manage full-time assistance does anything else useful with their time. I'm hoping to figure that out in the coming year. This is a bittersweet anniversary to celebrate when I understand how very very lucky I am, and how the story is much different for other people who do end up in nursing homes and other institutions.

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* Because of medication, adjustment to the vent, and a lowered cuff that prevents sudden total blockage, plugs are not an emergency I have had for about ten months now. This is the result of a lot of hard work and vigilance on my part. Conscious, alert, and in charge of my own health care here at home, I can weigh all the factors and adjust medication that prevents plugs, refuse meds if I don't need or want them, ask for suction, request more or less water in my cuff -- all without being institutionally "noncompliant" or having something decided without my input or consent. Until I was able to verbally express these wishes, my written communication was respected and "heard" by people who my family and I were able to assure cared about my preferences.

Cross-posted at Echidne of the Snakes. Check for more comments and discussion over there.

Like a lion -- A rant

Last weekend we got 15 inches of snow here at the Gimp Compound. Since I'd managed a successful Parts Replacement Event with my feeding tube just a few days before and had no place I needed to be, a snow day or two was cool with me.

But this week. This week has been more of an on-going adventure. Tuesday, a family member wandered over to the local Menard's and tripped over some poorly-placed lumber, cracking bones in her wrist and knee, spraining an ankle and breaking a toe. Half my nurses -- those who are licensed LPNs attending the local college for their RNs -- are bogged down in what appears to be a departmental failure to provide the needed education. A suddenly-changed school policy requiring they do their online computer homework at the college instead of at their convenience means that one of my nurses has had to cancel a night shift, which means my gimpy relative with the weak bones has two nights per week to try and help me in ways she can't possibly, at the moment.

And the snow plows have given up for now. Visibility is too low. Tonight's nurse made it here over slippery roads. Hopefully tomorrow will see the roads clear. In the meantime, my back-up batteries are ready in case the power goes out. I can last for 16 hours on them, if I need to.

And yet this is not the most distressing news of the week. My medical supply company called today to say that Medicare will not allow them to give me more than 90 trach suction kits per month -- that's three per day, when I always need an average of maybe five, and some days easily nine or ten. Trach suction kits consist of sterile gloves, a sterile container for the sterile water used to lubricate, and a sterile plastic catheter that slips down my windpipe to suction up the lung gunk that bypassing the upper respiratory system triggers my body to make. The catheter is connected to a little vacuum machine that provides the suction. This is the key service my paid help must provide in a sterile format in order to keep me, or anyone with a trach, healthy. Without suction I will literally drown.

And I cannot pay out of pocket for what Medicare will not cover because that would mean I do not need the state to help pay for my nursing help. Have I mentioned that while most all of my nurses have needed to be trained to do this suction (because it is not a basic skill all nurses learn to qualify as nurses), the state nevertheless requires that nurses be provided if it pays for my help? I'm happy with the women who work here -- though we need twice as many of them -- but their required qualifications do not mean they are trained to do what I require. And of course, they cost more to employ than a non-nurse who would have to be trained to suction in the same way. And with the shortage of available nurses, I do not have the staff that I need.

The Medicare rules about three suction kits per day are not new and do not affect only me, of course. As I understand it, I can get some sort of medical waiver through my doctor certifying I need to not drown and must have suction available when I need it instead of just three times per day, rain or shine. Apparently that waiver will be required attached to every sale of every kit beyond the allowed amount for as long as I need them, which will be until I stop breathing, basically. Somewhere there are people paid to look at these waivers all day, in perpetuity. From a listing of these rules:

If Medicare determines there is medical necessity, the standard allowable for the following items are listed below. Medicare may sometimes approve larger quantities, but that decision is made on a month-to-month basis by the individuals reviewing the claims. They may approve larger quantities one month, but disapprove them a different month. For the most consistent reimbursement by Medicare, you may want to consider placing one order per month, staying within the limits listed below.

My orders to the medical supply company are already monthly. I have no idea how complicated getting this waiver and getting permission for the medical supply company to give me extra kits will be (is there a special form? can I get kits on credit in the meantime? will I need to get a doc to sign the form every single month for the remainder of my life?), so it's a lucky thing I have a few extra kits just now. As I said, I cannot buy out-of-pocket what I need to breathe because my state-paid nursing care would be cancelled altogether.

As far as I can tell, this is how it works. You qualify for Medicare, and muddle along until one of the obscure rules bites you in the ass and threatens your life. Then you see what you can do to survive. Or the system fails you.

It's not a matter of wise or difficult funding choices. No one is out there allowing sterile catheters to be shoved down their windpipes willy-nilly, recklessly suctioning when they don't really need cleaner airways. The kits I currently use cost about $5 each, which, let me assure you, is peanuts compared to many other innocuous pieces of plastic that I also require. If I didn't have enough kits, or had to use non-sterile equipment that caused an infection and forced me to go to the hospital, my Medicare would kick in to pay for much more than a few extra measly kits per day.

And I finally saw my pulmonologist yesterday, for the dizziness of seven weeks ago, which has abated almost completely now. I think it was caused by weaning off Dr. Perky's Effexor. I confirmed that I more or less know what I'm doing with the ventilator settings, and a blood gas proved all is well. (A competent RT had absolutely no trouble making me bleed.)

I like this doctor, and we discussed a drug I use in a nebulizer that the pharmacy has insurance reimbursement problems with. The pharmacy will only give me the big bottles of the liquid medication (30 ml as opposed to 4ml bottles), which then expire and must be thrown away before I have used half of each bottle. Half my prescription goes into the garbage because of the size of the vials I'm sold. Then my monthly prescription runs short and the insurance company freaks out because I need more too soon. I will try to wean off that drug, if I can. The doc says that's best anyway, and may be possible. Or switch to mail order drug supply and see if that doesn't work. (Incidentally, this drug -- Mucomyst -- keeps the lung gunk from getting too thick, allowing me to need less suctioning.)

None of this is about insurance or Medicare providing what I medically need or even necessarily saving them money. It's about policies that don't fit individual needs and apparently are not to be budged.

Do not even get me started on the single-use sterile saline bullets sometimes used to dilute thick lung secretions so that suctioning is easier and causes less trauma. Medicare simply states they are not necessary and will not be covered at all. They were used frequently at the first-rate rehab center that taught me what I need to know to keep myself healthy. I have some in a box here, and use one or less per day. Now I learn they are completely unnecessary and the comfort I have noticed from their use is a figment of my imagination.

Gah.

Like a sieve, only not so much

I had that ABG draw this morning, as scheduled, to determine if recent dizziness is caused by my ventilator settings or something else. That went well. An RT I'm acquainted with did it cautiously but easily and with very minimal pain. It had to be done by her in the local hospital rather than the adjoining clinic because, well, I don't know. Fear of arteries, I guess. But it was good to see her (except for the "aww, look at poor you on the vent" part) and tell her I've felt very healthy and appropriately-oxygenated or whatever since I got the hole in my neck and all.

For reasons possibly due to Gimp Compound breakdowns in communication, I also had an appointment for a regular blood draw to examine my levels of potassium, magnesium, and other yummy -esiums that were dangerously low a year ago. They were checked six weeks ago and I've been choking down lots of bananas and potatoes and other starchy colorless joys since then because those levels were only borderline acceptable. If French fries qualified as hot and greasy little mediums for the -esiums, this dietary addendum would be more fun. If I ever did get a thrill from a banana, that joy was killed last year when I was eating two each day for months to get the potassium up.

The ABG was what I really thought I needed, but I went along with this extra blood draw because, well, when six people are involved with arranging your clinic visit and you wish to live in harmony amongst them, what's a little poke with a needle. And maybe I could ease off on the bananas if all went especially well, right?

Things looked worrisome when the clinic receptionist said, "Hmm, this appointment was for yesterday. Have a seat in the central waiting room and we'll see what we can do." See what I mean about harmony at the Gimp Compound? Which of us screwed that up? Shhh, never mind.

I didn't wait long to see the Woman-Masquerading-as-a-Phlebotomist. I spent that time listening to the sick dull ache of my right inside wrist. Those nerves around arteries know how to discourage activity in their territory. I knew it wouldn't last too long, but it's a uniquely-flavored pain. I once had an RT take an ABG without me feeling the stick at all, which shouldn't be physically possible, but I enjoy contemplating the perversity and competence of that moment from time to time.

When called upon in the clinic waiting room, I did everything I could for the WMAAP. I told her past successes in springing healthy leaks in me usually involved the "butterfly needle," tiny enough to match my little veins. I sent her confidence vibes. I sat calmly while she dug around in the crook of my left elbow, the edge of my left wrist, and had a friend dig around the top of my right hand.

Then she pronounced me too dehydrated to bleed and told me to go away and come again another day.

No, really.

In the many hundreds of blood draws I've had in 38 years -- including some very unpleasant situations when I was actually sick and dehydrated -- individuals have sweated, apologized and passed the needle off to colleagues, but no one has ever told me it was not possible to make me bleed.

"You have no available blood today. Sorry. Go home."

Actually, since I had gotten the ABG I believed was important, and we had reached the limits of my commitment to family harmony, I was prepared to tell them to back away with their needles anyway. But still.

The pain from the ABG has abated almost entirely now and there's just the most minute sensation in the nerves to remind me that anything happened there at all. The other needle holes in my hands and arms hurt and are bruised blue. I did get results of my ABG and though I haven't yet talked to my primary, apparently the numbers look good.

I wish I'd had the chance to see my doctor's face when all this occurred with the WMAAP. She sometimes surprises me with hilarious breaks from her stoic, thoughtful professionalism, and I'd like to have seen which way it would go today. And who she would have found to get the job done, because she would have found someone or elected herself.

In the meantime, more bananas.

Friday at the Gimp Compound or Dizzying up the Girl

So, about ten days ago, my trach's cuff burst. In my throat, in the middle of the night. And just for fun, this happened when I was just coming down with a virus of some sort and happened to be sitting on the toilet. I was with a new nurse -- new to me and new to the profession, so she'd never seen a trach switch before. And my Mom had never done one, but we woke her up for the opportunity. Dad was there too -- it was an exciting event for us all.

But it went very well. When I'd last had a scheduled Parts Replacement Event, I'd asked the doctor to show both my mother and the nurse present how to do it. We were mostly prepared. We only lacked sterile lubrication to make it easy to slide the new one in. But in the excitement, we didn't pay the usual attention to the exact amount of water to fill my cuff comfortably with.* And we didn't adjust the strap around my neck just right -- because I have a scrawny neck, the trach can be shoved in too far so that it curves against the back wall of my windpipe and the opening is curved up against the front of my windpipe, which both hurts and impedes delivery of air.

What with the virus and this trach switch requiring fine-tuning for optimum breathing and comfort, I've been pretty dizzy the last ten days. Oh, and I've just finished weaning off the Effexor Dr. Perky placed me on in rehab, so that might be contributing to my dizziness too.

I've got an appointment for a blood gas** next week and I've spent part of today with the cuff filled beyond speaking-capability in order to better approximate the exact settings I used in the hospital, which is when I was last monitored by RTs and a pulmonologist. I've been the vent expert in my life since I came home with the machine last March.*** Ironically, state-paid home health care for a vent user requires hired nurses, but nurses are not trained in the specialty of vent management unless they get special training to be ICU nurses or the like. Nurses also are not typically allowed to do trach change procedures, though obviously it is necessary that they be prepared to step up in a setting like mine if I need one in an emergency.

Respiratory therapists get training on ventilators, what the settings all mean, how they effect a patient, and they learn to do trach changes and take blood gases (and do the lab work) as part of their routine in a rehab hospital like I was at. I very much enjoy the individual women who are employed as nurses for me, but geez. The rules don't quite fit the purpose and I need an expert just now.

Oh, and there's a new nurse coming to work here tonight. I don't know if she's ever done suction, worked with a vent, or what. So finding that out is my job tonight. I'm dizzy and tired and fed up with these regulations that don't really give me the full expertise they claim they do.

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* The cuff is the inflatable part of a trach that puffs up in the windpipe to ensure that the air going in the tube gets to my lungs and doesn't go upward and out my mouth and nose instead. The trach I currently use, a Bivona TTS, inflates the cuff with sterile water instead of air, which other kinds of trachs use. So when it burst, I immediately got about 7 or 8 ccs of water in my lungs in addition to not getting the vent air where I needed it. And we added about 5 ccs more before being certain the cuff was blown.

The photo above is the Bivona TightToShaft trach kit, which includes the trach itself (top left), the obdurator (shaped in a gentle curve like the trach, it's hard plastic that fits inside the trach tube to help with insertion), and the wedge or "tooth" (top right, used to unhook the installed trach from the vent tubes for suction or getting on clothing). The red cap to seal off neck breathing while leaving the trach installed and cheapo trach tie I do not use but both are also in the picture above. You can't really see the cuff, but it looks just like a little condom on the end of the naked trach. The tiny photo inset shows the cuff inflated.

** A blood gas (or arterial blood gas, ABG) is a blood draw taken from an artery in order to measure oxygen, carbon dioxide and other stuff. In this case, it helps determine if my ventilator settings are giving me too little or too much air.

*** When I say that I am the vent expert in my life, I mean that I know more than any person who comes in contact with me -- including the dude from the medical supply company who is supposed to come monthly and do a maintenance check on my machines. I know what the codes are for the various alarms when they go off, I know what the settings of frequency, sensitivity, tidal volume, expired tidal volume, PIP, PEEP, MAP, etc. all mean generally and in terms of what I suposedly need. I know how to cancel the alarm and change settings depending on if I am getting sufficient air, which varies according to how full the trach cuff is. I know that a high pressure alarm usually means there is condensation in the sensor tubes and I know the ways to fix that. I'm happy and proud I have learned all this in the past year, and it was my responsibility to do so, but given that I am required to have nurses in my presence constantly in order to receive state aid for home care, I am not thrilled that I know more than every single professional around me and that their nursing training does not mean they bring the actual vent machine expertise to the job.

This week at the Gimp Compound

It's been busy around here. On Monday I spent time with four new nurses who will be helping me out. It's been hard for the home health care agency to find them and my parents have spent about four sleepless nights per week for the past two months taking care of me because of the shortage in medical professionals required for state funding of assistance to a vent user. (How's that for a confusing run-on sentence?)

Two of these nurses I met a couple weeks ago and they worked actual shifts where we were adjusting to each other and they were still learning the routine. The other two nurses dropped by for the first time ever, and one of them shadowed another nurse around the house for a couple hours to start learning what the job entails. These new people were in my house and watching me or caring for me in every daily situation from 8 a.m. until about midnight, which was mentally exhausting even though they all seem like competent women who will eventually fit right in.

Tuesday I had a doctor's appointment that consisted partly of getting my primary's script for various things I having the nurses do or not do that need to be medically official. This too, is to satisfy all the state departments and supply and insurance companies that insist on being up in my life. This is the price I pay for not being able to afford severe disability myself.

I did also get weighed, which requires some sort of equipment that accommodates a person who cannot stand. (A chair with a scale attached isn't a complicated idea, but most clinics don't have one so I have to visit the ICU and lay on a hospital bed with a scale built in.) Good, good news there, and I'll write on that separately.

Wednesday I went shopping for the first time since I was sick well over a year ago! Long before I went into the hospital I was ill enough to not go anywhere for fun, so this was a big, fun deal. Yeah, I've been to Target a few times since coming home, always after local doctor's appointments. And I have eaten out and browsed a few places during trips to the Twin Cities for parts replacements events. But I haven't gone anywhere just for the fun of it since 2005. So Wednesday was fantastic!

I went with my sister and a nurse I've employed since I came home last March, and I learned something new about myself during the course of the day. Since I first became visibly disabled around about age twelve, I've always been hyper-aware of disability as a public spectacle and performance. That is, I've always known people are curious and watch, and until now I've never shaken the self-consciousness that is part of the invasiveness of physical difference.

Now, apparently, I no longer give a damn. I'm more visibly interesting than ever, of course, with the puffing vent and tubes coming out of my neck, and I still have to manage interactions caused by public curiosity, but I don't feel vulnerable to other people's gaze in the way I always have. I'll probably write more on this as I think it through.

While at a bookstore (!) looking at a table of fiction, I turned and found a man standing right next to me. Caught staring, he was quick: "I was just admiring your chair," he said.

My chair is hardly the most interesting thing about me, as noted above, but I thanked him and edged my scooter forward a bit. From behind me now, he asked some weird technical question that proved he is probably a medical professional of some sort and was likely admiring my small laptop-sized vent, which even the highly-skilled respiratory therapists at my rehab hospital don't normally get to play with in the vent-users wing where they work. It was surely professional curiosity, and he asked something about whether it provided "oxygenation blah-blah-blah."

He was behind me and I simply shook my head and that was the end of it. But I was thinking, "Dude! I'm in a bookstore for the first time in forever! Look! A new print edition of Pride and Prejudice! Gabriel Garcia Marquez has a new book out! Let me fondle and feel the joy!"

Lunch was T.G.I.Friday's because I wanted a massive menu of cheesy or spicy or breaded and bad-for-me foods. Curiosity at the restaurant too. Did I imagine a couple people pondering for the first time how a woman with a hole in her neck at the next table would affect their appetite? I don't think so, but the difference is I didn't care.

Have I mentioned that I've been speaking now for about two months? The quality of my voice varies but I am able to leave the trach cuff loose enough that I have the constant capability and almost never write notes to communicate anymore. Out shopping, talking, eating -- a tremendously big deal.

Meanwhile, the past two nights have been spent with a hesitant new nurse, so I've felt "on the job" even while sleeping, and I'm pretty tired. But it's been a good, busy week.

I completely missed out on the latest Disability Carnival which is up today over at Planet of the Blind. Stephen and Connie have done a fabulous job and I can't wait to visit all the links.


For those who need the description: The photo above is of my portable vent where it is mounted on the front of my scooter, with the control box of my scooter in the foreground since the picture is taken from my point of view. Hanging from the handlebars is an ugly but functional homemade bracelet that holds the wedge for getting the circuit (vent tubes) disconnected from my trach for suctioning or getting dressed. The wedge looks like a large flat white forked-shaped tooth and because my sister and I are nerds and love the movie Dune, we call it "the tooth! the tooth!."

Last year

My motivation to blog has been limited lately. I think this is related to an on-going preoccupation with what my life was like last year at this time and a conscious effort to appreciate my current freedom (relatively speaking) and soak up the holiday season for all that it is and can be. Precisely one year ago, I was being tranferred from the ICU of a major Twin Cities hospital to the vent-users wing of a rehab hospital. I was a quarter of the way into my 4-month hospital stay.

Besides all the frightening aspects of my medical condition at the time, this move to a rehab institution was a terrifying change because I was leaving behind every medical professional who knew specific details about my care that aided in comfort and minimized pain. I was gambling in my choice among several local rehab institutions I knew very little about. I was counting on all medical records being tranferred with accurate information intact. And, I was leaving a fantastic and motivating physical therapist for unknown replacements whom I worried could never compare to the woman I'd been seeing daily.

I ended up at a great institution full of compassionate, dedicated and very humane people. I was brought there in an ambulance by some guys who could easily start their own comedy act. The broken hospital bed I was put in was quickly replaced with a better one, and my rehab began again. Looking back, things went remarkably well, though there are the inevitable -- and important -- gripes I have with aspects of institutional care. I've blogged about some stuff and I'll blog about more yet.

But what's most on my mind these past weeks are the people, the specific individuals I relied upon at these institutions to literally keep me breathing. When I think back, I'm overwhelmed with gratitude for their kindnesses and awareness of me as an individual lying in that bed.

There was my primary doctor at the local hospital who announced to her colleagues within my hearing that whatever came next was entirely up to me because I was "in charge" -- a declaration that no disabled person afraid of losing her autonomy in a medical emergency can take for granted.

There was the student doctor in ICU who took the time to soothe my concerns about possible interactions between painkillers and my neuromuscular disease.

There was the respiratory therapist who gambled wrongly about my ability to breathe on my own, yet returned to my bedside after the trauma of reintubation to cheer me on for whatever came next.

There was the respiratory therapist I recall through a mid-night narcotic haze because he skillfully eased my breathing like noone else could. When I was still panicky and gasping despite a clearer windpipe, he noted with quiet humor that I could "just breathe" if I only tried.

There's the nurse who gave me courage on one of my darkest days by whispering in my ear to not give up.

There's the nurse who noted I enjoyed All My Children and put a note on my wall encouraging anyone around at noon on weekdays to tune my TV in. Maybe it seems silly, but it was a comforting routine amidst the pain and helped insure one small desire of mine was noted every day.

There's the busy doctor who bought me an audio book of Zora Neale Hurston's Their Eyes Were Watching God so I would have an activity while lying endlessly in bed.

There's the IV nurse who worked on replacing my PICC line (I had five in four weeks) while I lay there and leaked nonstop tears. Before he left he silently wiped my eyes with a compassion that makes me want to weep remembering it.

There's the young nurse who cheerfully called out "Good job, Kay!" everytime she helped me off a successfully-used commode or bedpan.

There's the nurse who checked in on me one evening even though I wasn't her patient in order to ensure that I'd gotten my weekly shampoo.

There's the male nurses' assistants that helped me with the most intimate tasks while maintaining a respect for my modesty and humanity -- not just toileting, but bathing, hairwashing, eating, and lying comfortably.

There's the nurses' assistant who couldn't find my Pizza Goldfish so he surprised me with some other munchies from some vending machine.

There's the nurse who made a point of dropping by with her big floppy puppy over the weekend.

There's the recreational therapist who saw the morning staff were very busy and hung around to feed me breakfast when I still needed the help.

There's the nurses' assistant who shared with me the concerns for her young learning disabled son.

There's the nurse who never once mentioned that her young son was very sick with cancer.

There's the respiratory therapist who automatically knew and understood my desire to learn about all the equipment I use. He'd explained a new humidifier on the vent to my parents while I'd still been in bed and unable to see what he talked about, but he made a point of coming back to it when I was up in my chair.

There's the doctor who kept popping into my room to watch and share the finals of the women's Olympic figure skating competition with me. We rated the costumes and the skating together.

There's the nurse who bought me a little squooshy pillow which I still use every night.

There's the chaplain who gave spiritual comfort by reading poems from one of my books to me. She was at ease with the speechless vent-user and good at sharing a laugh with my parents too.

There are three people I didn't like very much who each greatly humbled me by saying they would miss me greatly when I went home because of my character and personality.

There's the housekeeping guy who unwittingly made me laugh every day with his singleminded thoroughness in dusting the clock and picture frames.

There's the person who called me friend and trusted me with personal news no colleagues knew.

There's the therapy assistant who helped me exercise my limbs while we chuckled through each morning episode of King of the Hill.

There's the respiratory therapist who saw my postcards and we discussed a mutual desire to visit Barcelona, Spain for the incredible architecture.

There's the student nurse for whom I was the very first patient and her gracious way of asking for input to help her serve me and learn worried but touched me.

There's the newly graduated nurse whose error resulting in my trach being pulled completely out has provided me with endless confidence at home because I experienced that emergency under the safe care of the respiratory staff and, thus, learned for myself about worse case scenarios and that I can handle them without panicking.

There are the many people who have immigrated from far away countries and shared stories of their homelands, cultures, ethnic foods, and personal immigration struggles that continue to impress and inspire me.

There's the nurses' assistant who gave me a photo of her youngest daughter -- that child easily wins the award for baby with the chubbiest and most tweakable cheeks ever seen.

There's the social worker who provided excellent family support when the insurance company was trying to institutionalize me in a nursing home.

There are the people who became my friends and I meant to email or meet with more often, but found I missed all of the above professionals so desperately when I went home that I needed to be strong and focus on my life and recognize that I'd hopefully never see them in rehab on a daily basis again.

I haven't mentioned anybody more than once above and I haven't mentioned dozens of other folks who touched me as well. I hope they are all healthy and well and I hope others who must spend the holiday season alone in a hospital bed -- in ICU, rehab, nursing home or any institution -- receive as much compassion and companionship from the professionals who care for them.