A year ago I had two feet . . . But I'm still alive and well . . .

THE END

It has been nearly a year since I crashed and ended up spending more time than anyone would want in the hospital. But I’ve been home for a few months and things couldn’t be better.

Oh sure, it’s a pain in the ass waking up in the middle of the night and having to put on your right leg to go to the bathroom, but one adjusts. One either has to or just fade away, and after all that time not here, I’m really happy to be here at home.

The ramp in the hallway from the living room to the bedroom is just fine, and the wider doors are perfect with the wheelchair when I use it. I do exercises every morning in bed after my shower, meditate then do some strength building, up and down the ramp 10 or 20 times, some standing exercises in the kitchen (squats, side and back leg kicks and the like) holding on to the counter, and walking with crutches either outside (when the driveway’s clear) or a few laps around the house.

A very nice young lady, Becky 2.0 (as opposed to my friend Becky), comes and cleans every couple of weeks and Chasity grocery shops for me, takes out the trash and picks up the mail. It’s hard to carry much using crutches, but some of those things will be easier when I can drive.

Yep, it’s been nearly a year since I’ve driven as well, as previous posts have outlined. Most places frown on right-leg-amps driving with a regular vehicle set-up, so one has to adapt a vehicle with hand controls or a left-foot accelerator. After reading up on the options, I didn’t want a left-foot accelerator (and my evaluation when I started driver training recommended hand controls as well). So that’s where I am now, learning how to drive with hand controls. With a few lessons left and my new used Jeep to be adapted, driving again will soon be a reality. Yipppeeee. Freedom.

The most recent visit to the doc showed everything appears good . . . weight (too heavy, but better), blood pressure and pulse normal, and blood sugar (A1C) very normal. All my old medications have been trashed for new medications, lower doses and less strong drugs. All good.

My bucket list for the year includes a bunch of things (hey, lying around a hospital causes one to make all kinds of lists), including some fishing and lots more photography. I’d love to take a dip in a pool, but have to figure out how I can get in and out of it. (That could prove embarrassing.)

We all make adjustments in our lives. Thanks to my family and my friends, I’m here and able to make a few adjustments. Turns out you can teach an old guy at least a few tricks.

Driving now is a lot different than it was with two feet

Driving. Driving. Driving.

Haven’t done it in almost a year, and I sure had mixed feeling about having to take an adaptive driving course before being able to have my Jeep adapted with hand controls.

First, the process is expensive, and I thought not worth the time and money. One goes through a 3-hour evaluation process, which includes various hand-eye tests, cognitive tests and finally a bit of driving in a car with hand controls. (A left-foot accelerator was an option at the start, but they didn’t recommend that for me, and that set-up requires even more than the 8 to 10 hours of driving they recommended for me with hand controls.)

Getting to the driving place is a pain, since, obviously, I can’t drive, I have to have someone drive me up to White River Junction, wait for an hour while I drive, then bring me home.

However, expensive, a pain and originally thought to be a waste, I’ve come around a bit.

Yep, it’s still expensive and a pain (and let’s please note that Adaptive Driving are extremely experienced, friendly and easy going), but without the training, there’s an accident waiting to happen. Now one can buy control online and install them, but don’t.

Without going through the training, car adaptation companies won’t alter your car, so that means you’re kind of trapped into spending $1,000 or more taking lessons, then another $1,500-plus getting your car adapted. Tons of money, but as I approach the end of the process, well worth it. Using hand controls is tricky and even though you’ve driven for 42 years, lots of stuff (how you parallel park, for instance) is a whole lot different when you have to keep your left hand on the controls (accelerator/brake) and not use the steering wheel itself (but a “spinner” now  attached to the steering wheel at about 4-o’clock position).

The lessons are in their car, with the final lesson in mine, which will be adapted as my lessons wind down.

Freedom is right around the corner. Yiippppeeeee.

Lie around in a hospital long enough and you make a little list of pet peeves

When one spends as much time in the hospital as I did, one notices lots of stuff, makes mental notes and finds he has a few pet peeves. When things run smoothly, as they usually do, no harm no foul. In a hospital, your dignity can be pretty stripped away, but for the most part, staff at both Dartmouth-Hitchcock and Valley Regional were friendly, professional, courteous and respectful. And even the not great stuff wasn’t that big a deal overall. But I did have a few pet peeves. Hey, you would, too. Here are a few.

Dear doctor . . . when someone is leaving hospital rehab and has requested prescriptions be called in to the pharmacy, could you please get your sorry ass in to the patient and ask him what meds he has at home instead of assuming he has meds at home (which he doesn’t, since he hasn’t been home in four months). So instead of writing one script and assuming, don’t ask and don’t assume the patient is taking the same meds as he was . . . (some are similar, others have been dropped and two new ones added) . . .  that’s lazy and it’s bad medicine . . .

Dear doctor . . . I know you rotate through and are really busy, but perhaps you could at least glance at the chart to see why I’m here. The “Oh, did we amputate your leg here?” and another’s, “When did you lose your leg?” might have been answered before you came into my room.

Three pet peeves: People coming into the room without knocking (come on, would you like someone coming into your room without knocking. It’s intrusive.) . . . Doctors not telling patients they’re changing meds and why . . . and staff buying hospital/therapy supplies.

One doctor changed my diet without telling me, so we had a long drawn out argument about that and his rather condescending manner. I was largely unimpressed. As a rehab SNIF patient, medical oversight is limited. He put me on a “cardiac” diet without asking, then when I said I’d had a lot of nutrition advice and management at Dartmouth and was happy with the way my meals were managed. He said, “So you want me to repeat their mistake?”

Oh boy . . . never mind the fact that I was in your emergency room initially and not given much of a chance, then transferred to Dartmouth (thank goodness) and the doctors and staff at Dartmouth saved my life, you’re asking if I want their nutritional advice and recommendations thrown out because you think you know best? Screw you. He changed my diet back to the initial recommendations.

Look, I expect good doctors will have strong egos, but I don’t expect them to talk to me like I’m a know-nothing idiot. Sure some patients are nothing but whiney pains in the ass, and I sympathize. But most patients just want to be treated with the respect they deserve as people . . . which is how you’d like to be treated, too. (Over the next couple of weeks, I will say, that doctor made a solid effort to communicate better, was friendlier and lost much of his “you’re a dumb ass” veneer.)

Rotating nurses and doctors leave much more room for errors. (i.e. Wound care repeatedly done wrong because nurses (different ones every day) sometimes don’t look at the paper directions . . . directions that originally came from the Dartmouth wound care team. Doctors make med errors . . . as at my discharge, with two meds not prescribed in hospital that were called in at discharge . . .)

June 18 . . . the doctor wants to keep me here another week to balance any meds. No way . . . He’s had plenty of time to do that and I ain’t staying another week. I’ll go to the doc in a couple of weeks for a check up and blood work, but to stay here another week while they screw around with the meds they’ve taken me off of and put me on . . . nope.

Last but not least, I don’t think teachers should have to pay for supplies and I don’t think physical and occupational therapists should have to pay for therapy equipment or activities’ items (like games, pizza-making supplies, coffee, etc.) It was great having the chance to have a little coffee clutch or play a board game or two, but the staff should be given a budget for those things and not buy supplies with their own money.

Set your people up to succeed. Give them the resources to succeed and then praise them for the work they do, because they’re damn good at it.

Leaving rehab meant returning to "Home Sweet Home"

I think when I crashed, nobody thought I'd ever return home. Never mind the fact that in those first couple of days, nobody was sure I'd leave the hospital still breathing, but getting home became something of a quiet driving force for me. It became a goal. Luckily for me, a goal happily reached. 

The doc rotating through the hospital, was worried about the still healing wound on my right knee. It was on the tibia, just below the kneecap. She was worried the pressure from the prosthesis would worsen the wound, and was moving toward delaying the use of my leg.

The wonderful thing about modern medicine is that a patient can refuse treatment . . . So I protested politely but firmly telling her there was no freaking way that anything was going to delay my using my shiny new leg . . . nothing.

Waiting for the wound to heal could take, well, weeks more . . . no way. Not after a few awkward steps with that new leg.

So I agreed to take the prosthesis off if I had to sit with my knee bent for any length of time. (The bent knee would push my wound into the front of the socket.) So with those few limited steps, there was now more than just hope for me. I’d felt I could return home with a prosthesis, but in the back of my mind I knew that was a hope and not necessarily a reality.

Lying in the hospital as the end of my stay approached, I knew my goal of getting back to my house would, for better or worse, be met. There were times when I hoped it would, then worried it would never happen. I think when I first crashed, nobody around me felt I was going to return home . . . they were worried about my returning anywhere. So as you lie there day after day and night after night, you do wonder whether or not it would have been better to just throw in the hand and die. I was told that’s what I said before I got to the ambulance months earlier . . . just leave me here.

But time goes on and you focus more clearly . . . your family and friends . . . things you want to do . . . things you want to see. And getting home becomes the goal . . . a reason, if you will to get better.

I did. And with a few modifications inside . . . three doors widened and a ramp installed from the living room into the hallway leading to my bedroom . . . it really became home sweet home.                  

Carbon fiber, titanium and stainless steel . . . I get a shiny new leg and another chapter begins

On May 17, a Friday . . . about 80 days after first entering the hospital . . . I tried on a new leg.

David Loney the prosthesis maker (Willow Brook Prosthetics and Orthodics) made a finished leg instead of a test leg in the hopes that it’d fit perfectly with minor adjustments and we could start rehab with a leg. It fit, but he wasn’t completely happy with it, so he took it back to his shop and presented me with a shiny new leg the next week. I have to say that after spending weeks in a hospital, sometimes feeling fabulously helpless since I couldn’t get in and out of bed without assistance, which included at one point a ceiling lift hoisting me to a wheelchair, seeing that prosthesis for the first time was pretty incredible.

The leg was really the first physical sign we were coming to the end of the rehab road. Not that the road would be easy at all, but just having that leg pulled over the stump of my right leg brought tears to my eyes . . . the feeling of helplessness started to fade because I knew, or at least thought I knew, that with a prosthesis, I’d be all right. I stood up with the leg on, a post at the bottom of the urethane sleeve that went over my stump (the politically correct term is “residual limb”) clicked into the metal piece at the bottom of the carbon fiber socket.

David inspected, moved the prosthesis a bit, and checked how high the ridge of the socket was on my leg. Then I stood up.

For the first time in weeks, I could balance my rather substantial bulk on two legs. Ok, one of them wasn’t really mine, but still, the feeling was wonderful. The prosthesis didn’t hurt, rub or press against parts of my leg that it shouldn’t. A gentle firmness held the back of my leg (which will, over time, get smaller and smaller as the existing muscles and tissue shrink).

My physical therapist, Cindy, stood at my right shoulder as I stood up from the chair. David, with his hands on the safety belt around my chest, watched me take a few tentative steps forward. Holding on to the parallel bars, I had to look down since I had no idea (let alone feeling) where the rather fake looking rubber foot (stuffed into a sneaker) was going. But everything worked . . . more or less . . . and that feeling of helplessness faded a bit more as we talked about the changes that would be made to the final (hopefully) finished leg.

The fake foot on the prosthesis was a size too big . . .

“Your foot’s in the mail,” David told me with a straight face.

Rehab at Valley Regional Hospital was going pretty well. Three young women were responsible for that . . . Jessica, my occupational therapist, worked with me to get in and out of bed, in and out of the shower and, along with my physical therapists, safely in and out of the wheelchair . . . both before and after I had my prosthesis. Cindy was my main physical therapist, charged with teaching me how to, in essence, walk again . . . using a walker, and later crutches. Sarah, the head physical therapist, also made sure I was, literally, making steps . . . OK, they weren’t always pretty steps and often a bit unsure . . . in the beginning, I kept catching the toe of the prosthesis as I moved it forward . . . pretty much giving everyone a heart attack as I stumbled a bit each time.

*********

Erin visited me in the rehab hospital about three weeks after I got my leg, and watched a physical therapy session before lunch with my parents, who had been visiting regularly after migrating back north to Vermont from Florida . . . Erin got a bit teary when the two of us went back to my room. It was the first time she’d seen me out of bed since I first went to the ER February 27 . . . and the first time she’d seen me walk since then as well . . . Never really knowing if I would be able to walk again. Thanks to my leg maker . . . Yeah, I’m a sap . . . I cried, too.

Elbows and knees were slow to heal, but out of D-H we go

One of the fabulously dumb insurance rules is that you cannot be fitted for a prosthesis in a regular hospital, because in that case, the hospital has to submit the bill for payment instead of the prosthetist submitting it directly. So my rehab at Dartmouth-Hitchcock continued without a prosthesis, and that wouldn’t happen until my knees and elbows healed enough to get to a rehab facility.

One of the reasons I spent so much time at Dartmouth-Hitchcock was the wounds on my knees and elbows. Being on the floor for as long as I was and trying to get up, crawling around and all wore the skin down to the bone on both knees and both elbows. And they took a long time to heal.

The wound care at Dartmouth was fabulous, with a dedicated team coming in just to check, re-dress and analyze the wounds . . . taking photos, sharing with doctors and surgeons. Fortunately, and it was close, I avoided surgery on my right elbow where there was a fear that it just wasn’t generating new tissue fast enough. With a wound vac working on my knees as well as the right elbow, tissue started to generate faster and the wounds were making progress . . . slow progress, but progress nevertheless. A wound vac is literally a small pump that maintains a vacuum on a wound that is specially dressed to be air tight. . . any fluid is sucked out and collected at the pump. Mine weren’t generating much fluid, they just weren’t healing.

As the end of my time at Dartmouth approached and we started to look for a rehab facility, the wheels seemed to come off the well-oiled bus a bit.

While rehab facilities say they’ll take patients with wound vacs or other “equipment,” the simple truth is that they won’t. The way insurance reimbursements work, they take a beating for anything beyond the most simple care, even IV lines. So that starts to limit the options . . . and the personnel on the discharge end at Dartmouth seemed a bit over their heads at times trying to figure out the insurance issues as well as rehab facility issues. 

One needs to find a “skilled nursing facility” (SNIF) for the rehab and the insurance match.

Valley Regional Hospital, despite a fantastic lack of knowledge about where they fit into the rehab game, ended up as my facility. In part because a couple of places wouldn’t take me with the vacs, one group lied about their rehab from amputee to prosthesis, another was full, and another eliminated itself after mistaking another patient’s chart with mine (would I really want to go to a place whose hospital rep made that kind of error?). Valley wasn’t sure exactly how it would work out, but they said it would.

So Valley it was . . . and my post-hospital rehab moved down the road a few miles to my local hospital. The wounds had healed enough so the vac could be removed, and my basic rehab at Dartmouth had pretty much maxed out. It was time to move on . . . The line of ambulances at Dartmouth included one that would take me there. This time a lot better off than I was the first time I paid them a visit in February.

Emotional ups and downs as you think about life with a leg and a half

Even today, with all the wounded vets we’ve seen on the news, we’re not accustomed to seeing people with amputations.

What’s left, even after a non-violent and surgical amputation really isn’t very pretty. The stump ends up looking like something unfinished . . . something needing a bit more leg and a foot, to complete it. Suddenly legs and feet became much more elegant to me, and no matter how hard I tried, there was something incomplete about it until I tried on the test prosthesis.

Helpless, unable to even get to the bathroom of my own volition. You can’t just jump out of bed and into a wheelchair, and I just wasn’t strong enough to use a walker with one leg yet . . . Damn . . . the feeling sucks . . . you depend on the nurse to sponge you down in bed, empty the plastic urinal and bedpan . . . And kitchen personnel to bring me my meals for Christ’s sake.

You kick the sheets off, but they get tangled in your left foot. The stump moves easily with no foot to weight it down, and it sure does make leg-lifts easier, sans foot.

In the back of your mind, no matter how you’ve been hoping, the nagging question remains: Will I be able to return home? It was a question I’d pondered for weeks and weeks. Up and down, feeling sorry for myself, then not so sorry. Negative, then positive, often boosted emotionally by the nurses, nursing assistants and staff.

I don’t really know what I expected, but damn near to a person, the staff at Dartmouth Hitchcock (and later rehab at Valley Regional) was outstanding. Boy I have to tell you, that made a difference.

Contemplating the removal of your leg is a bit disconcerting, but the strength of friends and family carried me through it

I must say it’s rather disconcerting to lie in bed and contemplate having your leg amputated. I guess in many ways I was lucky . . . my military vehicle wasn’t hit by an IED . . . I wasn’t standing there watching the Boston Marathon . . .

My parents, sister, and ex-wife had flown in from various parts of the country and spent the next several days with me. My aunt and uncle were there, too, at times keeping me pretty well entertained. Friends, some I hadn't seen in decades, stopped in regularly, too. My younger daughter Erin was there through the whole thing, keeping her very pregnant sister in Colorado up to date and consulting with her throughout. It’s great to have kids . . . it’s even better to have two great kids. It’s tough to think about putting everyone through this, and I can never repay them. But having them all there got me through the whole thing . . . family and friends.

Sometimes we just don’t think about how connected we are. Then something happens and they just come. Their strength carried me.

After a few days, they moved me out of the ICU and into a room. My system was getting hammered by the antibiotics, but they were working. The infection had calmed down and my blood sugar was lower. Now I could deal with the partially dead right foot and leg. My head had started working, too. For a while there, I was pretty confused and unclear. To this day I have virtually no recollection of the ER at Valley or the initial time at Dartmouth Hitchcock.

 I made the decision after talking with a flock of doctors . . . orthopedic surgeons and plastic surgeons. The die was cast even before I got to the hospital, though. My right foot was rapidly dying and was already mortally wounded . . . riddled with the infection that had in turn spread throughout my body, draining me of my strength, hence the collapse at home. In the initial emergency room trip and initially at Dartmouth, there was concern the infection was imbedded into the bone and would kill more of that than it already had . . . then there was concern about the left leg.

But I wanted to be sure amputation was the only option. Hey, you can’t blame a guy for not wanting to have his leg cut off. They weren’t great legs, but we’d had a 57-year relationship, after all.

Six days after entering the ICU at Dartmouth Hitchcock Medical Center, my right leg was amputated below the knee.

Gone. It was removed as I slept in the operating room, surrounded by nurses, anesthesiologists and doctors.  God everyone was friendly. It was kind of disconcerting. I barely caught a glimpse of the surgeons before I was went under. The foot had been debrided twice before I made the decision—in the hopes that, well, there might be a chance to save it.  There wasn’t.

So now I was left to think about how I’d move on from here. Literally. I’d never thought about being handicapped, but now I was, what remained of my right leg a short lump under the covers on the hospital bed. It wasn’t going to grow back. So now I was left to think what that meant . . . How would I get around? . . . Could I go back home? . . . Would I be able to drive again? A million question flashed through my head. Right then I didn’t have any good answer. Over the next few weeks, I’d go up and down emotionally, wondering if it was worth living through this, or would it have been easier to just have stayed in bed or on the floor and just died. 

I think that’s the normal thought process, but as I got stronger, things became more clear. Everyone at the hospital was upbeat and positive. As were my family and friends, though I think behind the scenes there was a lot of talk about my living somewhere else once I was out of the hospital. But getting home became a goal, a driving force at least mentally to get better and get the hell back to my house . . . my home.

By the time I crashed there was a forest fire burning inside me

At the end of February 2013, I crashed. My body was being killed by an infection that had spread throughout it, my kidneys were failing and I’d fallen on to my bedroom floor a day and a half earlier and wasn’t strong enough to even get up on to all fours and reach a phone to call for help. Over the next couple of weeks, I’m going to post a few articles about what I call “the crash,” (largely because I have no idea what else to call it, and when I hit the floor, it surely was a crash). In the end, it worked out ok . . . I was saved by two friends, my younger daughter and good doctors. I lost part of my leg in a most unheroic way . . . I failed to take care of myself.

There’s a time in your life when you realize you’re in trouble. By the time I realized it, it was too late to save my leg and I nearly lost my life.

It sounds dramatic, but at first it wasn’t at all. I’d fallen a couple of times before this. Both times I’d managed to right myself, but didn’t call an ambulance and get to a hospital.

I fell for a third time and ended up spending a day and a half on the wooden floor of my bedroom, struggling to get up, then relaxing, hoping my strength would come back and I could get up on to the bed. I never did. All my strength was gone, sapped by the infection that had now taken over my body, fueled by high blood sugar. I was told another day and that would have been it . . . a friend called another friend (sounds like an ad . . . ) and they decided, having not had their calls returned, to call the police . . . A while later . . . in the dark of my room, headlights lit up the space, then flashlights walking around the house . . . entry . . . and police and EMTs were there.

Two friends saved my life, and a week later, my youngest daughter would be tasked with making decisions she never might have thought she’d have to make, but as my health care legal guardian, if you will, she was placed firmly in the middle of my crisis.

They got me up . . . but I (stupidly) refused to go to the hospital.

It wasn’t until later that night . . . I got up about 7 and a couple of hours later my daughter, her boyfriend and my friend Becky arrived and I refused to go to the hospital, thinking I’d be better in the morning after a good night’s sleep. I wasn’t, and despite my protests, they called an ambulance  . . .

I think when I look back on it there were signs I ignored . . . or overlooked if one is being more generous. For a couple of weeks before I crashed, I felt a bit more tired than usual. Not the most active person in the world, but halfway through the day I was pretty draggie. Things that I would normally do, like dishes, I just left to do later. Then never got to them.

The week before I crashed, I fell twice, once in the kitchen, and once in the bathroom and was able to get up both times. One morning, I think three days before I crashed, I noticed a large blood blister on the inside heel of my right foot . . . I popped it with my pocket knife, blood flying everywhere . . . The next day, the skin had pulled away from the heel and the underneath looked a bit discolored.

I’m not going to pretend I’m clear on the last day or two before I hit the floor. As I’ve tried to put it all together, there are some blank spots, filled in by family and friends. I should have called an ambulance or made my way to the hospital . . . but didn’t. That “woulda, coulda, shoulda” was dumb and nearly cost me my life.