Beware the Ides of May

The Beginning

Just about 8:45PM May 15th 2003

It’s time to walk the dogs. Charley’s been beat up by Boomer and Spunkie after dinner and needs a private walk tonight, and so he’ll go last.

I leash up Spunkie, Betsy, and Boomer and we head out. It’s a nice evening. The day had been great. A high of 72 degrees, and a current temp in the high 60s; shirtsleeve weather. The sun had set at 8:09 and it was just about fully dark when we turned for home, north on Derwyn Road. One of the girls stops to pee, and we start off again.

Around 650 feet from home, Boomer finishes sniffing the pee spot – he’s such a boy – and cuts diagonally right to left from my rear and under my legs to sniff one of the girls. He always checks to see who peed. He bumps me. I’m surprised and start to stumble.

Looking down I see Boomer’s ribs and my knee getting closer together. When we rescued Boom he was a sick puppy (heartworm) and he’s had a few other ailments and dietary indiscretions (like eating an entire broken glass ice cream dish).

To spare him and my wallet another trip to the vet, I lunge and fall heavily on my right knee. Had I just continued to fall it’s likely that I’d have missed him as he was moving fast, and then none of the rest of this would have happened. For, in lunging, I hyperextended the knee and did some serious damage both to the knee and my back.

Mugshot of the culprit, Boomer, a very special Keeshond.

The Author as Lawn Ornament

The fall didn't seem too bad. There was hardly any pain and my extremities seem to work with one exception: my lower right leg. It doesn’t want to move. It didn't hurt and I don’t think it’s broken, but I have no idea what happened. Maybe I am stunned. Since there was a sturdy tree about 8 feet behind me and to my right. I roll and crawl to it. I hope to use it as a crutch to stand up, get my wits about me, and head home.

I manage to keep all three leashes on my left wrist through the fall and aftermath. That wasn't a problem. The dogs seem as stunned as I was. They stay quiet. Anyone who knows these guys or Keeshonds knows how rare that is. The dogs behave wonderfully, quiet and concerned. I had interrupted their game and they want me to play again.

After I get to the tree I try to haul myself up. I quickly realize my right leg is a very large dead weight. After a frustrating minute or so I give up, and just roll on my back on the lawn to think things over.

The Beached Whale is Carted Away

Fortunately my cell phone is in my pocket and not crushed. I call Hilary, and tell her I have a problem. She needs to come get the dogs.

After she drives over, we discuss my situation, not that there is much to discuss. She puts the dogs in the car. I’m another story. It’s apparent that no one person is going to be able to get me up. We decide, reluctantly, to call for help.

To this point I am lying on a dark lawn on a dark street. No one has noticed what has happened, I like that. No need to call attention to my predicament. 911 would change all that and I really don't want that to happen. The emergency room entrance at Delaware County Memorial Hospital (DCMH) is all of maybe 1000 feet away, all downhill. Surely I can avoid an ambulance. Slowly, but surely, my thick and totally undamaged head realizes that it was either 911 or a new career as large lawn ornament.

Hilary takes the dogs home and I call 911. They say help would be right over. A couple of minutes later an ambulance and two police cars appear. All had their spotlights on and in their really bright glare my anonymity vanishes. At least they didn't use their sirens. The neighbors hurry out to see the show.

The paramedics are great. Its clear that my leg isn’t badly broken and I have no injuries that require immediate medical attention. The problem is how to get me up. I’m on the extra-large side. One paramedic weighs 105 pounds and the other weighs 140 or so. I outweigh the pair of them and my right leg is a dead weight. With their help, I try to stand up or crawl so I can sit/lie on the gurney they pull over. No go. They decide on a body board and a straight lift. I scoff.

Foolishly as it turns out. They bring the board over, drag me on to it, and firmly strap me to it. Then they move to either end. A large policeman offers to help, but they say they have it under control. And they do. The smaller person lifts the foot end and the larger person lifts the head end and without much rocking I am deposited on the gurney.

The ambulance doors close and we’re off on the 1/4-mile run to DCMH. This is my first conscious ambulance ride and I am very curious about all I can see. The ride is too short.

ER-Live!

When you arrive at an ER (one that isn’t overwhelmed with cases like those on TV always are) on a gurney being pushed by paramedics you go right to a treatment area. The ER at DCMH is currently being rebuilt from scratch, so we go into the temporary treatment area. It’s not huge, and there are no separate treatment rooms, just roughly 8-foot by 8-foot curtained-off areas. I am immediately put into one, and a tech and a nurse came over and started seeing what is going on and taking my history. I think Hilary is out front registering me.

I clearly don’t have a badly broken leg, but the swelling and physical exam indicate that maybe something is chipped or broken on my patella (kneecap bone). I mentioned I couldn’t move my right leg below the knee and I’m sure that was noted, but my comment rings no bells. The patella fixation was firmly in place and would remain in place for weeks.

An aide rolls me over to an internal x-ray area right in the ER, where pair of very gentle, very competent, and very kind techs take and develop 3 or 4 shots of my knee. The process is painless, including the positioning and moving.

Digression: The x-ray process is not always so nice. While in high school I dislocated the middle finger of my right hand playing football, and because of the extreme swelling an x-ray was ordered. The x-ray techs spent a very long time positioning my hand using small sandbags. It took seemingly forever and I was left with a wrist that hurt as much as the finger. The corker was the x-rays were so blurry that it was impossible to tell whether I had a hairline fracture or not.

So the DCMH x-ray techs were great!

I get rolled back to my assigned cubie. A nice young resident comes in and shows me the films. There are dark spots at each upper corner of the patella. These may be normal or they may be chips. There’s enough pain to blur the issue and x-rays can’t show everything (something I was to learn way too much about in the next few months). He gives me two Percocets and a cup of water, and grabs a knee immobilizer, which he proceeds to put on. As he’s putting it on I understand why he gave me the Percocets first. It doesn’t hurt my knee at all, but digs deeply into my groin.

Next an orderly comes over with a pair of crutches, which he sizes for me and helps me up onto. I get some advice, some demonstration, and two sheets of how-to-use-crutches instructions.

From the first, it’s obvious I’m a klutz on crutches

The Steps

After about two awkward, lurching, hesitant steps on the crutches deep in the ER, common sense and a desire to get home that night kick in and we request and I get a wheelchair.
The excellent aide who taught me the most about crutches wheels me out and to the back passenger door of the car. He helps me up and I manage to get in on my back with my immobilized leg way up toward the roof.

We drive the two short blocks home. I get out of the car with Hilary’s help and into the house. I can’t remember how I did that or how long it took me. The dogs are in the backyard as I come through the door, but soon are allowed back in they and are very happy to see me.

At the ER it was suggested I sit on the steps and work my way up backwards. This is very fine advice for someone with an injured leg that will not tolerate any pressure. The leg gets dragged up. It’s also fine advice for people a lot smaller than me. Me, I should have just used a crutch and the banister and walked up as I easily did thereafter.

But I followed the advice to sit and back up. It took 30 minutes plus, left me gasping and muttering and when I got to the top, I knew two things: I’d never do that again, and the was no way I was going to stand up. So I scooted the 15 or so feet to the bed on my butt, rolled over, and using just my arms, rather slowly pulled my carcass up onto the bed. The Percocets were working and I wasn’t in any pain (not that I ever was after the first few minutes in the ER), and I was exhausted.

We fall sleep, dogs piled up against us, Boomer, as usual, at my head.

First Night

It wasn’t all that bad. Two Percocets made a difference. The immobilizer was uncomfortable and when correctly positioned up tight in my groin, the rough edge of the fiberglass stay dug a couple of serious gouges and then keeps digging.

I did sleep and I remember taking the immobilizer off at some point. Those two events are probably related.

The bruising is truly spectacular. My entire leg, from mid-calf to mid-thigh is one very dark, very angry bruise. The bruise goes all the way around.

Musing: What I Thought Was Going to Happen

When I came home from the ER I was pretty sure I didn’t have a broken patella. The pain was nowhere near severe enough. A chipped patella, which is what the ER resident was talking about as one of two possibilities would be a real painful event. The other possibility he allowed was a severe bruise.

That’s what I thought I managed. I’ve done other less than bright things and that’s what happened. I have real heavy bones, and it takes some serious effort to break something. My past has pretty clearly shown that. I also have a real high tolerance for that sort of pain. Again, experience.

So the next morning, when I called into my supervisor at the IRS, I described my problem as a bone bruise and that I’d probably be out a few days, but back sometime next week.

I really believed that. Obviously I was really wrong.

Did DCMH have an ER orthopod on call? They must have. What would happen if someone came in with a really bad fracture? The ER resident couldn’t reduce a compound fracture. Do the ambulances not deliver that sort of case, but take them to a real trauma center? How do I find out that sort of information? [Short answer: Apparently Yes, they divert to the Hospital at the U of Penn or anther trauma center.]

If there was an orthopod on call, why didn’t I get referred right there on Thursday night? Why the instruction to see my own doctor as soon as possible.

As far as I can tell there never was any consideration of ligament or tendon damage. I know that I mentioned I couldn’t move my lower leg, and any sort of cursory examination would have and must have shown that. That doesn’t relate point to a bone problem, but to a ligament or tendon problem. Did I really see a resident or just an intern? I think the doctor was a resident, but I can’t swear to that.

Ligament and even more so tendon problems have the best prognosis if the corrective surgery occurs within 24 to 48 hours. The example of pro athletes is instructive here, When they ligament and tendon problems they have surgery with 24 hours, period.
In my case the diagnosis came 20 DAYS after the injury and surgery did not happen until day 26.

Did the 6-day wait between diagnosis and surgery make any difference? Probably not. I was so far out the optimal window that 6 days made not a bit of difference. A more relevant question is whether my back problem was intensified by the fall on the 15th or by the operation on day 26. If the former, would earlier intervention helped? If the latter, the timing makes no difference.

Summing up: I thought I was looking at a quick recovery and for the first 20 days I had no reason to believe otherwise. That was so wrong.

First Day

Sometime during the night I had to take the immobilizer off. It was on so tight and so high that it was digging bloody gouges into my inner thigh right below my groin. [That’s the way it has to be to work.] With it off I sleep well. Hilary puts it back on when she gets up.

Learning how to move about on crutches is a real adventure. Mostly it’s a matter of being slow and careful. The bathroom is the biggest challenge. Sitting on the toilet is very interesting from a theoretical standpoint, and very unpleasant in reality. To my surprise, the steps are no real problem. I easily back down and going up is slow but almost normal. I just need to remember the simple rule: bad down first; good up first.
I take the immobilizer off again a bit after noon, as it’s really uncomfortable and also take a Percocet.

Fortunately there was virtually no pain in my right knee, and my left knee, which had so recently had a full Synvisc treatment, felt great.

In the morning I call Dr. Peter Vitanzo’s office. He’s the non-surgical knee specialist at Rothman who had been treating my arthritis and other knee complaints. I cancel the right knee Synvisc course scheduled to start May 22nd, and I need him to look at what I had done to my knee last night. His first available appointment is Monday morning at Rothman’s King of Prussia facility. I take that and call my primary care doctor’s nurse to get a referral for x-rays and specialist treatment.

I spend a basically normal day, albeit with less movement and no dog walking. I loosen the immobilizer from time to time, especially when sitting in the recliner in the living room. Hilary needs to reset it before I get up, a chore she doesn’t like, and I can see why. She has to stand and bend and pull, none of which is comfortable for her knees or back.

Getting up from the recliner is a bit tricky. The arms are too soft and low to provide much support. I have to use one hand on the side table and one on Boomer’s crate. This causes me to twist as I arise. There is no other way.

I take off the immobilizer when I go to sleep. The pain still isn’t a problem, although I’m sure to be real stiff in the morning.

First Weekend

The stairs are easy, especially if I don’t have the immobilizer on. There’s very little pain, and the Percocets are going unused. I only got 5, and that’ll be far more than enough.

I had to work out the best way to do stairs. Going up is simple. The good foot leads and I hold the crutches in my right hand at the handgrip (middle) level. They function pretty much like a cane. I face forward. The only hard step is the one right before the landing. I’m actually doing most of the heavy lifting with my left arm and leg and there’s no decent handgrip at that step. I do have to remember to start with the good (left) leg.

Figuring out how to come down proved a bit more of a challenge. Facing forward was plain scary. I couldn’t generate a whole lot of confidence nor could I figure out where to put the crutches or how to bets use them. Going down, I need to lead with the bad leg.
The solution is simply to back down, and it works even better if I toss the crutches down from the landing and use both hands on the banister. This is sort of backwards and sort of sideways, and gives me the most confidence.

And, like walking on ice, confidence is everything.

The car is a bit interesting mainly because of the walkway to it. The flagstones get very slippery when wet and I’m better off on the grass rather than trying to get the crutch tips to hold. The steps, one down from the door, a small one from the porch to the walkway, and the ugly thing from the walkway to the driveway are all challenges. The first two just need to be taken slowly and carefully, while the step to the driveway is a horror. There’s no railing, but the yew on the house side is big and strong. The problem is the driveway slants down to the left and down away from the step. I never actually realized how steep and slopped the driveway is. I can’t generate much confidence at this step, and have a tendency to stop, stare and think for a while when going both up and down.

Dr. Vitanzo Gets a Look

I get up and, having slept with the immobilizer off, to leave it off. The bruises are starting to color up nicely. The area of bruising still amazes me: mid-thigh to ankle, all around. I have an 11AM appointment with Dr. Peter Vitanzo at Rothman’s King of Prussia facility, which is just a bit up 202 past the malls.

Peter

Peter is a non-surgical knee specialist at Rothman and a thoroughly nice guy. He’s been treating the arthritis in my knees and has just finished a very successful Synvisc series in my left knee. The knee is pain free, totally. I trust Peter.

When we get there Hilary carries in the immobilizer as I crutch in. We wait a bit, and settle a problem about the referral — the electronic referrals that Aetna now relies on are not foolproof. While I’m waiting a tech gets and takes me to the in-house x-ray suite, where she takes another set of x-rays of my right knee.

By the time the x-rays are done, the referral question is resolved satisfactorily and Dr. Vitanzo is ready for us. We head to an examining room where I hop onto the table, sans immobilizer.

Peter comes in, examines me and turns his attention to the x-rays. He doesn’t think I’ve broken anything either, He jut thinks I’m badly bruised and the area is inflamed. I get a lecture on not using the immobilizer. I really need to wear it to promote quick healing. Hilary gets to tell me: "I told you so."

The immobilizer is put on and I limp out with a prescription for some Percocet and an appointment at Rothman’s Center City office the following Tuesday, the 27th.
When we get back to the car, I have to lie across the back seat with my leg elevated so the door can be closed. This is not a comfortable position. We stop at a nearby sewing store so Hilary can check out the Bernina Arista 200 super computerized sewing machine that she is wants.

After that and a quick Mickey D stop we go home, where I manage to keep the immobilizer on until it’s time to go sleep. I’m having no trouble with the stairs. I’m slow and I back down so that a fall will put me on the stairs rather than in free fall to the foyer.

I take the immobilizer off when I get into bed and fall asleep at once. There’s surprising little pain.

Aside: There’s little pain because of what really happened to the knee. An MRI would have caught it, but as before the patella was the focus of attention, not the quad tendon. This is probably my fault as I told Dr. Vitanzo what had transpired in the ER.

A Week of Ups and Downs

20 May -- 26 May 2003

It's 8 days until I have to see Dr, Vitanzo again. I have serious hopes that I'll be mostly recovered by then.

The immobilizer, when on properly, as put on by Hilary, is eating serious bloody gouges into my thigh on the inside. Even using cloth padding (a sock) is only a partial stopgap. If I put the immobilizer on myself I can't quite get it that high and it immediately slips down to rest on the top of my foot.In that position, my knee bends pretty freely. Since I have little or no pain, I'm not using it much.

On Wednesday I decide that the vacuum cleaner is a reasonable substitute for crutches and I can do some much needed vacuuming in the dining room. All goes well for about 10 minutes. Right in front of the buffet and near the heavy wooden stool, I do something wrong and just sort of sink slowly and painlessly to the floor. I'm so amazed that I lie there for a while thinking things over. I'm not quite sure what caused the fall, but there doesn't seem to be any damage. The stool is solid enough to make getting to my feet an easy proposition. At least I have enough sense to cease vacuuming.

Sunday we go to the great new Indian restaurant, Mainline Jewel of India, up in Ardmore. They have a back door off their parking lot, I wear the immobilizer and the trip is a great success.

Buoyed by the restaurant visit, I decide I can mow the lawn on Monday. It needs it. The lawnmower is a cordless electric and thus very heavy. It should be excellent support as long as I stay on the level parts of the lawn. That's the plan. I start right outside the front door and all goes well for a while. When I turn I pivot on my left (undamaged) leg. No sweat. Down by the Japanese maple, I forget to think and pivot on my right leg. It immediately buckles and I fall into the thick ivy, which turns out to be a superb cushion. It strikes me as so funny that I lie there laughing.The lawnmower provides enough support for me to get back to my feet. That's the end of lawn mowing though.

I don't think either fall has further damaged the knee. Both were somewhat controlled, slow, and not at all violent. Neither caused any pain, and there was no new pain when I got back to my feet. Still, toppling over is not a positive way of life.

The First Hint of Something Serious

My next appointment with Dr. Peter is scheduled for 8 days later, May 27th. When I arrive he’s a bit surprised at my lack of progress in gaining control of my lower leg. After a careful physical exam he discovers a depression an inch or two directly above my patella and right in the middle of my thigh. Depressions are normal in various places around the sides of the knee — go ahead, feel your knees — but the depression Peter finds should not be there.

He immediately says it feels like a blown quad tendon. At that point I don’t have a clue what a quad tendon is or how important it is in the physical scheme of walking or bending. All I’ve ever heard of was ACL and PCL and other ligament- and cartilage-related stuff.

So I calm asked what the treatment is. He tells me: surgery, and not arthroscopic surgery either. Oops. Not good news.

He orders a knee and lower thigh MRI to confirm the diagnosis, but he is sure what they are going to show. We set a follow-up for the following Wednesday.

I head home unhappy. On the way (with Hilary) I call the Delco MRI Center and ask for the earliest possible appointment. Their first available is 10 days later.

Then we go to Haverford MRI on Route 1. We have no better luck there and I don’t like the place. In some desperation, I call Rothman and set up an MRI for next Tuesday at their facility, which is right down the hall from the main office. That would give Peter a chance to see the results before I next see him.

The First MRI

I cab back to Rothman on the appointed day and time. Everything seems OK. MRI’s were no big deal —I had no problem with a long shoulder MRI a couple of years ago, and that was with my head deep in the tube, which won’t the case here — I hope.

I’ve noticed my leg kick twitch has become more frequent and more violent recently, but I figure I can control it. The Rothman facility isn’t impressive. The walls need paint and the space is about as tight as possible.

The scheduled procedure is long. The machine isn’t latest generation and thus slower than new machines. The techs figure the knee will take 30 minutes and the thigh another 45.

After a short wait, I get on the machine and get put in feet first. This will be a snap.
They start on the knee — this is one noisy MRI. After a few minutes my right leg starts twitching frequently. After 15 or 20 minutes I ask for a halt and the techs agree. We can’t be getting decent images.

I tell Dr. Vitanzo what happened and also that the MRI folks can try again in about an hour. Peter then writes me a script for a single 5mg Valium. I take it down to the Rite-Aid on the corner of 10th and Market and discover the generic is $10 for a single pill (insurance co-pay actually) and the brand name pill is $9 since they will not bill insurance. Good grief. I order the brand name.

Since it was going to take them 30 minutes (in reality it was 40) to put a single pill in a vial, I head over to MacDonald's for lunch, as it was clear I was going to be downtown for a while.

As soon as I get the pill, I take it and head back to the MRI area.

Alas, the Valium can’t control the twitch at all. But this time we decide the doctors would prefer something to nothing and I do the whole 75-minute procedure.

I cab home not looking forward to the next day.

The Very Next Day

I go back to Rothman and Peter sees me right on time, as usual. As I sit down he’s looking at the MRI films, which are hung on a light box. He says: “Steve, you sure don’t do anything halfway.”

I have a 95%+ plus rupture of my quadriceps tendon. Even I can see this on the MRIs.

Peter immediately excuses himself, steps out, and comes right back with Rob Fredericks, a surgeon. Rob had obviously been waiting and had seen the scans. After a brief hello and a look at the actual knee he starts talking about scheduling surgery, if possible, for Friday! June 6

Rob being there also explains the Wednesday rather than more usual Tuesday appointment with Dr. V. Rob is only in this office on Wednesdays.

It turns out, although he doesn’t tell me, that the best time to repair a blown quad tendon is within 24 to 48 hours after the injury occurs. This is day 20 after the injury. It also turns out quad tendons are fairly rare as knee injuries go, so the diagnostic miss is pretty much understandable to me. I do wish the ER had an orthopod on call and he had seen me the night of the injury, but orthopods are fewer and further between in PA as a result of the malpractice mess.

I agree to surgery as soon as possible. Rob operates at Methodist in SW Philly and at Lankenau up near Bala Cynwyd. I’d prefer Lankenau, but that may not be possible.

I sit down with a surgery scheduler and she gets my basic info. She promises to call no later the following morning.The surgery will actually be outpatient and won’t even need a pre-cert from the insurers!

A Day to Think About Things

My scheduler at Rothman calls early and says the Lankenau is too busy and we’ll do Methodist at noon, next Tuesday, the 10th. Since I have no choice, I agree. She also tells me that I need to be at Methodist at 10:30 tomorrow for pre-admit.

I don’t have a clue where Methodist actually is, and I suspect she doesn’t either. She gives me some very general directions, and I decide to put my trust in the cab driver.

Do I really want this operation? Do I have a choice? Not really. I fall too easily and walk too slowly. I only hope that the huge diagnostic delay hasn’t harmed my chances for a full recovery.

The day passes quite reasonably. I manage not to fall down all day.

It turns out that not holding out for Lankenau, a much better hospital than Methodist, is a really big mistake.

Preadmission Testing

My appointment is at 10:30. Since I need to take a cab, and I have no clue how long the trip will actually take, I get into a cab at 9:30. In an hour I could be half way to New York City, so getting to somewhere on Broad St. in South Philly should be reasonable. As it happens the cab driver grew up in South Philly and knows the best way to go. I take notes because we’ll have to make the trip ourselves on Tuesday.

The hospital is way down there, very close to the stadium complex at the foot of Broad. That is a bit surprising.

The driver lets me out by the handicapped entrance. This is a long ramp, fine for wheelchair users and hell for people on crutches. It’s always like that: wheelchair users are the only handicapped usually considered. What works for them doesn’t necessarily work for people using crutches or walkers.

I manage to get to the registration desk where a kindly clerk see my predicament and jumps me to the head of the line. That is very nice, but really not necessary. I am very early in any event.

I go up to the pre-admit area on the third floor, and after a short wait, have the required interviews and tests. The only pre-admit process I’ve ever done before is at Delco, and while this is different, it’s not very different. The people are pleasant and everything is done in 90 minutes.

Because time is too short to get the required physician’s medical clearance, the people at pre-admit send me to a local associated doctor’s practice. I'm told it’s a block or two down the street. That seems well within walking distance. The blocks turn out to be about as long as Manhattan crosstown blocks, and it’s more like 4 long blocks.

It takes 45 minutes of real effort to get there.

Once I get settled in the cramped waiting room, I really wait. After 30 or 40 minutes of screaming children I get lead back to a tiny examining room at the end of a very long, narrow hall. An older, but nice, and seemingly OK doctor, gives me a fairly cursory examination and signs off on my forms.

I easily hail a cab outside and get home in about 20 minutes.

Nerves and Plans

Friday afternoon to Monday night.

Everything is set and good to go. Now it’s time for nerves to take over.

Am I doing the right thing? Of course I am, I have no choice anyway. Rob is a top knee surgeon. He’s the consulting orthopod to the US Women’s Gymnastic Team. He must have a lot of experience in knee repairs.

I need to find and update my advance directive, and let Annie and a few others know about the operation. During the weekend, I get a little careless with the crutches, sometimes using one where I should be using two. I have two more or less controlled falls. One occurs in the bedroom and I was lucky in that I landed on the area rug. The second was in the foyer and really caught me by surprise. I was able to roll so the right leg was uppermost though. Neither fall seemed to cause any damage.

Hilary is also a nervous and so we keep to as normal a routine as we can.

The Knee Repair

The operation is scheduled for noon, and I need to be there at 10:30 at the latest. Hilary stays home, so she can take me.

In the morning, I dig up an old advance directive, modify it, and sign it. I have it witnessed and signed properly.

We leave about 9:30 as we’re not exactly sure how long it will take us to get deep into the bowels of South Philly, which is where Methodist is located.

Getting to Methodist proves reasonably easy, and Hilary spots a To 95 sign that will be real useful later.

We get to the orthopedic department where they’re expecting us. I’m installed in a spacious and otherwise empty prep room, where I’m told to change into a gown and slippers. Hilary is with me

A nurse comes in and goes over my history with us, very carefully. We chat while waiting. It seems Dr. Frederick is delayed.

Finally just before noon I go into anesthesia prep, where Dr. Wells checks me out. She’s gowned, masked, and capped and I can only see her from mouth to eyes. She’s concerned about the EKG I had Friday. One of the lines doesn’t look right to her. She calls a doctor from the practice that OKed me and he backs up the original decision. Dr. Wells does tells me to check with a cardiologist about that EKG when I get back on my feet.

The inverted T line has been on every EKG I’ve ever had. Sometimes people notice and comment on it, and other times, it’s seen and passed as OK.

I lie in the prep room an awfully long time. It seems Dr. Frederick has had a flat while crossing the Walt Whitman Bridge. He shows up around 2:00 and things get moving.
I’m moved into the OR, and we talk about anesthesia. They want to use a spinal anesthesia. I agree, because anything is better than a general. I sit up and the anesthesiologist pokes around a bit before getting to the right place, and I go out.
I vaguely remember the end of the operation, the doctors talking, and saying it’s over and went well.

Next it’s off to the recovery room, where I’m my usual obnoxious self, complaining about pain and demanding something to drink. Finally they pronounce me fit to move and I go to a room in the ortho area.

Hilary is there. Her trip to Delaware to get the Bernina Arista 200 was a complete success. In the room I get pain meds, food, and drink. They even dig me up a Diet Coke. Since it’s pretty late they’re willing to let me stay overnight, although my surgery was outpatient surgery. The bed isn’t comfortable and so I elect to go home.

We leave about 10:00 PM. My leg is in an immobilizer and I have a Cryo-cuff attached to keep the swelling down. Getting to the car is a challenge. No wheelchair and no help from anyone. It’s me and crutches.

I get into the back seat, jammed in pretty tightly. By the time I get home my whole dressing is blood soaked. We get me installed in the recliner in the living room so I can avoid the steps. I have a urinal ready to hand. The bleeding stops. A couple of pain pills put me to sleep.

I sleep fitfully, as the pain and immobilizer are not exactly comfortable.

Knee Repair +Day 1: Hazy is a Charitable Description

A day in a haze. I’m taking Percocets every 6 hours or so, 1 or 2 as the pain requires. I stay pretty much pinned in the recliner in the living room. The combination of the immobilizer and Cryo-cuff is a bit daunting.

Plus I have desire to move around. The bleeding (from last night) stopped quickly and while things look a bit messy, all seems OK.

I’m drinking OK, but don’t have much appetite. Hilary gets the prescribed drugs and I start on the antibiotics.

When Hilary goes up to sleep at night I take two Percocets and an Ambien. I have no idea that this not a great combination. I fall asleep easily thanks to the drugs but sleep fitfully.

Repair + Day 2: Sleepwalking

I know it’s Thursday, but I don’t know it’s Thursday. I’m still in an anesthesia/drug haze.

I remember taking 2 Percocets and 1 Ambien before I went to sleep around midnight last night.

I don’t remember what Hilary tells me happened at 7:30 or so this morning. I apparently got up, climbed the stairs, walked into the bedroom without crutches (hanging onto the wall I guess), looked around, and went back downstairs to my chair.

I woke up maybe an hour later, not remembering a moment of any of that.

I only had 5 Ambiens and I flush the 4 remaining. I don’t like the drug or the interaction.

Later I find that the interaction is known and usually patients are strongly warned against combining Percocet and Ambien. The exact words a nurse said to me were: “Some people don’t survive that.” Oh, just great.

Days 3 & 4

I stay in the recliner sleeping on and off. My main problem is incontinence. I have to pee often. Sometimes I try to crutch it to the powder room, but that’s 50 to 60 feet, and a couple of times I haven’t made it.

I’m still real hazy. I’m not eating much. I’m also not drinking much and much of what I’m drinking is Diet Coke. I do have a water pitcher and it is filled regularly, but I’d guess it holds less than a quart.

I’m also attached to the Cryo-cuff all the time when I’m in the chair. It fits under the immobilizer, which is never off. I can disconnect the Cryo-cuff to go to the bathroom and to go to the kitchen for dinner.

I really need to get the energy and willpower together to get upstairs. I do NOT like sleeping in the chair. I want to get to my bed. And stay there.

Of course, staying there won’t really happen as I’ll need to go to the bathroom and I have no idea how we’ll hook the Cryo-cuff up.

Repair + Day 5: Back to the ER

Sunday morning dawns just like the previous few days. However, when I try to get up, I can’t. After a while, and after some acrimonious discussion, I call 911 and ask for an ambulance.

The ambulance crew arrived and after they determine I really can’t get myself out of the chair, they bring a gurney in and get me on it. And we have another three-block run to the ER.

Again I was installed in a bed and examined by the usual range of techs, interns, and residents. An IV connection was started, and some basic solution was started. There is some, probably justified concern, that I am dehydrated. Some blood is also drawn and sent for immediate tests.

The blood work results only take about a half an hour. My potassium values are very low. And, yes, I am dehydrated. Potassium is added to my IV drip. After it all drips in, the IV is pulled and I am sent home with a lecture about eating and drinking properly, something I certainly had not been doing.

After getting home I eat more carefully, and drink more water. Otherwise, it was just another just about endless day.

Recuperation

As soon as I start eating and drinking somewhat more intelligently, life becomes better. The stairs become easier. Time goes much faster. I still have to deal with the non-immobilizing immobilizer though. I sleep without it, but it’s on most of the day. Hilary gets it on as tight as possible in the morning and I leave it as long as possible.

Putting it on is a challenge. I can’t reach the lowest fasteners while sitting on the bed. Finally I discover a method that works more or less. I prop my leg on the pulled out lowest drawer of my dresser, which is maybe 2-1/2 to 3 feet from the side of the bed. I can then get the thing under my leg and around it. Finally I get the fasteners snugged up. This results in an immobilizer that sort of immobilizes. It’s nowhere near as good as Hilary can get it, but it’s the best I can do.

The stairs dislodge the immobilizer almost every time I go up or down. I try to do the stairs no more than 3 or 4 times a day. That’s pretty easy. The stairs are still slow. Even if I toss the crutches down, going up or down takes 10 minutes or so. Going up is real work and I often really sweat.

Nothing really seems to change during this period. The wound is healing, but there is sometimes minor bleeding around the staples. The staples all stay in place.

I hope to start outpatient physical therapy as soon as possible after I see Dr. Frederick on the 25th. I would, in the normal course of events, see him on the 18th, but at that time he is off at a U.S. Women’s Gymnastics event. He consulting orthopedic surgeon to the team.

First Followup with Dr. Frederick

Today’s the day the annoying staples come out. I have an appointment with Dr. Frederick in the early afternoon. Hilary goes with me, and we need to be out by 5PM as she has a doctor’s appointment of her own in the early evening. Ideally we should be done by 3 or 3:30.

We get to Rothman and check in. And then we wait. And wait. The 45-minute rule should be invoked, but owing to the importance of this visit I decide to wait.

Small digression: The 45-minute rule is my personal standard for waiting for any kind of a scheduled appointment. My time is more valuable to me, than theirs is, to me. After waiting 45 minutes I get up and go. In general, I don’t bother to announce my leaving, but call to reschedule when I get home. I rarely invoke the rule, and I’ve never had to use it twice with the same provider. Hilary has also adopted the rule. It can be waived in special cases, but they’re even rarer than my invoking the rule.

After an hour and 45 minutes we get called back. After a few more minutes, Rob’s RN, Kim, comes in. Hilary promptly says, "You said she was good looking; you forgot to mention gorgeous." Hilary and Kim get along excellently. Kim’s here to ask me how I’ve been doing and to take the staples out.

She gets a suture removal kit and says it might hurt some. Actually there are maybe two pinches, but the process is generally painless. She says the wound looks good, and gives me instruction on massaging the incision line so scar won’t build up between the skin and muscle.

After about 25 more minutes, Dr. Frederick and a resident come in and carefully examine my whole leg. He’s very thorough. He’s also happy with my progress, although unhappy with the immobilizer, which he saw on me as I came down the hall. It was way down on my foot, and, as he observed, not doing much of anything at all.

Rob then watches and instructs Kim as she applies SteriStrips and a dressing to the wound area. He’s very particular about position and reinforcement of the strips. Rob tells me I can shower with them on, and that they will fall off naturally in the next 10 days or so.

Next he has his resident call Orthotics so that they can come over to the exam room to fit me with a specialized knee brace called a TROM. They’ll have to fit it here as he doesn’t want me walking anywhere in the immobilizer. In fact, he throws the wreck of the immobilizer in the trash. Before he leaves he gives me a prescription for outpatient physical therapy.

Jen comes over with a new TROM brace and starts the fitting procedure, but has to leave around 4:10. Donald then comes over and finishes the job. He a wealth of great stories and brace usage tips. He’s really great.

It’s just about 5 when we get out and we’re going to have to rush. The new brace makes car riding a bit easier and it stays where Donald strapped it for the whole trip home.
The evening passes painlessly and, as Rob suggested, I take the brace off when I go to sleep. I need it on when I’m moving about or sitting at my computer, but otherwise can have it off. Sleep comes easy.

Outpatient Rehab, Take 1

Finally I get to start rehabbing my knee. I had hoped to start the process by the end of June, say 2 weeks after the operation. Unfortunately Dr. Frederick was away the whole second week after the operation and I couldn’t see him until June 25.

He did write me a prescription for physical therapy, and I decided to go to DCMH therapy in nearby Barclay Square rather than Rothman’s own therapy unit all the way downtown. The Delco unit is a busy place and my first appointment will be on July 2nd.

My appointment is in the late afternoon. Hilary has the day off, so she takes me over. Of course I forgot the prescription and she has to go home and get it.

Once I’m escorted through the door of the rather dowdy entry and waiting area, I’m amazed by the size and openness of the facility. The main room is big -- at least 50 x 50, and maybe more. It is big. It’s also high, at least 2 stories high. The outside wall is all glass from about 5 or 6 feet up to the ceiling. It’s a nice room.

I’m led back to a row of tables along the back wall. The therapist who will be working with me and evaluating me today is Ann. She introduces me to Paul who is a PT student. He’s working with Ann and will also be working with me. That arrangement is fine by me. Paul will do most of the evaluating today, and Ann will carefully supervise him as well as taking the most critical measurements herself, after Paul takes them.

We start by taking my brace off. Then Paul does the standard leg strength tests by putting a hand on my foot or leg and having me move or push against the hand. Paul and Ann also measure the amount of leg extension and range of motion of both legs using a plastic protractor-like device called a goniometer. Not very high-tech but very accurate if you know how to use it. That’s one of the things Paul is practicing today.

Leg extension is simply the ability to totally straighten your leg. The normal person can achieve zero degrees or a straight line. Positive values indicate a lack of ability to straighten the leg fully. In rare cases some people can actually straighten a few degrees past zero. Those are negative values. And that’s also, in most cases, hyperextension or what I did when I injured my knee.

My extension lag, or inability to get to zero degrees (straight line) is about 30°. That’s a lot of lag. I’ve been warned that because of the delay in operating I may never get to zero and I’ll have some residual stiffness, I should get the lag close to zero, and certainly 5° or less. The current stiffness is severe, and that should improve a lot.

The second measurement, range of motion, is also measured in degrees, starting a zero when the leg is fully extended and the lag is zero. Supple people can get as high as 160° or more. Ninety degrees is a right angle bend at the knees. My range of motion (ROM) is less than but near 90°.

What I will do in physical therapy, for the most part, are exercises designed to reduce lag while increasing ROM.

The evaluation takes a bit over an hour and I feel really good after it is over. I now have hope of recovery. I’m not just sitting around. Before I leave I make three appointments for next week.

Dr. Vitanzo Looks at My Left Knee

I’m struggling more every morning.

I have an appointment with Dr. Vitanzo for just after noon. When I get there, both knees are x-rayed. Peter examines both knees, but spends most of his time on my increasingly unhappy left knee. We talk about possible reasons and how I go up and down stairs.

I bring up the subject of a functional brace, which I’ve been thinking about and researching. It likely won’t stop a good straight fore and aft buckle, but might keep everything in line and thus reduce pain. Peter is doubtful, but not unwilling to try one.

I’m sent over to Orthotics for a fitting. They give me a slide-on Donjoy Economy in medium. To say that it’s tight is a serious understatement. I head home with a small black brace on my left knee and big black brace on my right knee. Lookin’ good.

The cab ride home is about as unpleasant as I can imagine. Getting the slide-on off is very hard and very slow. There’s too much bending of knees that don’t like the idea. And I have no idea how I’m going to get the thing back on. Not a clue.

Later that night, I wake up to go to the bathroom around 2 AM. After, I’m not tired so I go check e-mail and look around the Net for an hour or so. I don’t a brace on as I always remove them to sleep. I also left the crutches in the bedroom. Moving carefully I can get around easily and safely.

Heading back to the bedroom, my right knee simply vanishes about two steps into the library. I’m too far from the grooming table to reach out for the support I suddenly need. I sink right down, rolling left as I go.

I lie still for a few minutes checking that my lower extremities are all working as well as they were right before the descent. Once I’m convinced that’s the case, I listen carefully to see if I’ve aroused any people or dogs. Nope, they’re all still sleeping. I can hear proof.

It’s now time to get myself up, so I roll onto my back to see what my best supports likely are. The chair to my left looks good, so I roll over there. Getting up is easy and I go back to bed and sleep.

Flunking Out of Physical Therapy

I’m feeling weaker. I know that it’s time to quit PT.

I’m not only failing to make progress, but I’m actually slipping. Sure, I can ride the stationary bike for 10 minutes and get about 2 or 3 miles virtual distance, but I should be on the power machines by now. I’m nowhere near ready for them.

What bothers the therapists most, I think, is how badly I walk on the crutches. It’s not a skill issue, but rather a strength issue. I’m pretty sure the rehab of quad muscle is way behind plan. It just doesn’t seem to be getting stronger.

When I arrive at PT today, Ann is there and as soon as I sit on the usual table to take my brace off, she comes over. I tell her I think it’s time for a hiatus. She’s relieved, because she was going to have to tell me I’d have to stop PT until my overall situation changed. The neuro weakness needs to be solved and reversed if at all possible. We conclude that my best shot for coordinating a diagnosis is Dr. Slater. I have an appointment with him next Wednesday.

Ann asks me if I want to do my usual workout, or just leave. She’s more than willing to run me through the usual workout, and that’s my choice. The workout goes as the others. I work on the kinotron and the bike and get an NMES treatment. No real progress, but I feel better.

I have a last lunch at Bob’s, and get a cab home. The rest of the day is normal. I get downstairs for dinner, but the steps get harder every day.

I should be gaining strength, not losing it. No one has any real solid ideas as to what’s happening. Nor does anyone have anything more than a guess as what the problem is. Is it in my head, my neck, my back, or my legs? Only my arms are not suspect, and who knows, maybe they’re at fault too.

Getting tossed from PT is humiliating at some level. I can’t say I didn’t see it coming. I’m convinced that what will happen is that I'll call another specialist, wait 2 to 4 weeks (or more for Slater) for an appointment, which will be inconclusive, and I'll be told to go for one kind of test or another, which will also take weeks. After all that the answers will still be inconclusive. All I can then do is seek out another specialist in another field and hope that he or she is able to come up with something I can act on.

I’m beginning to think that my condition, whatever it is, not diagnosable. I’m fated to simply lose all control of my legs (that, at current rates, will happen next month or the month after). The pace of diagnosis is too slow. I don’t know if the current damage is reversible or not. It seem nerves are affected and I’m told they can take years to heal or may not heal at all, even with treatment. It’s pretty depressing.

The Functional Brace

Today I tried the functional brace (a fairly cheap Donjoy) that I picked up for my left knee on my right knee. I got it on easily enough, but it’s a bit too small (it’s a medium and the right leg needs a large or XL).

Revelation. Decent support and feels pretty good. It obviously doesn’t lock the leg in full extension; but the big TROM only does that for the few minutes when it’s on right and recently applied. At least this thing cannot slip.

The steps were easy and felt much more secure than when I have the TROM on.

Four hours later it’s still comfortable. Time to hunt another one and try one on each leg. This could be good. The list is I think under $70, and since there’s no chance Dr. Frederick will OK one I’ll just get it. We can argue later; especially if I walk in without crutches.

Stilling Getting Worse

This post is transcribed from a document I created summarizing what was going on in my life. I knew I needed help and I new the drop by drop procedure that is, for the most part, modern medicine, was failing me. I needed some medical person to step up and act as coordinator and expeditor. That’s something I could ordinarily do well, but not right now.

Physical symptoms as of August 20, 2003 AM

Starting at my feet:

Left foot feels tingly and not under full control. It feels a bit swollen as well and it feels like there’s a strap pulling up under the arch. There are various abrasions caused by sleeping with the TROM brace on (since discontinued with OK of surgeon, Dr. Fredericks of the Rothmann Institute). The ankle feels swollen a bit.

Right foot has little feeling, seems to roll outward on its own and isn’t too controllable. It feels a bit swollen, and it feels like there’s a strap pulling up under the arch. Right ankle feels very swollen with most concentrated on the outside. The right ankle feeling, which is present 100% of the time, is very uncomfortable.
Left shin feels tight.

Right shin feels heavy as though a heavy boot is on it all the time and the back is very tight.

Left knee hurts full time and particularly when attempting to stand up to go up or down stairs. This knee had a full Synvisc treatment in late April and early May and felt fine until a few weeks ago. The knee is unstable (it wants to buckle) in a fore and aft plane, even with a functional brace (Donjoy Hinged Economy) on.

Right knee had surgical repair of ruptured quad tendon on 6/10 at Methodist Hospital. It feels very stiff, very tight and very full as though it was hugely swollen, which it’s not.

I went to physical therapy from June 25 to August 8, when PT was discontinued due to lack of progress (insurance ruling). The knee is unstable in all planes (tries to buckle) without a brace. It will try to buckle fore and aft even with the TROM on and can buckle 20-30 degrees with the brace on tight enough to slow circulation. That’s mostly because the brace slips as soon as I get up and move no matter how tightly it’s applied (by myself or others). Pains caused by what feel like loose bits inside the knee occur low on the patella well to the inside of the incision at random times and always while straightening the leg to tighten the TROM. These pains are brief but are easily in the 8-9 out of 10 range. (Is it possible there has been ligament damage subsequent to the operation?)

Normal pain level is 2-3 out of 10 in both knees while relaxing (sometimes while sitting this increases to at a 4), jumps to 6-7 for a few seconds in both getting up from a sitting position, is about the same when going up or down stairs, although a spike is always possible, and is a clear 9 when the knee starts to buckle.

Both thighs hurt to a 6-7 level when getting up and on the stairs. Both feel tight and the right leg feels a somewhat numb all the way to the groin. The left feels numb to mid-thigh when getting up. This is the pain that really keeps my mobility down; at least when I’m not fatigued.

My lower abdomen has a more or less constant low-grade pain on the left side an inch or two above the groin. As I fatigue (standing, moving, etc.) the pain increases and expands across my whole lower abdomen. It can become severe enough that I am forced to immediately sit down or risk collapsing. The pain can be triggered in several ways. Pushing my pelvis and lower abdomen forward as I do when leaning on a counter to prepare foods or cleaning up always causes the pain. Bending forward suddenly brings the pain on with a rush and at a level that causes me to lurch forward and down. Fortunately I’ve always been able to stop this motion with crutches or by grabbing walls or furniture. Lying on my stomach now causes the pain and also triggers severe lower back spasms when either leg twitches (see below). Obviously I avoid that position. Finally lifting my left arm level with my shoulder or higher triggers the pain, which then feels almost electrical (pulsating), and also causes extreme weakness in my legs. I used to have to lift this arm way over my head to trigger this response. Now it’s getting easier. I’m not 100% sure if I can trigger the reaction with only my right arm, and I’m not eager to experiment at home. Lifting my arms over my head is dangerous because of the extreme weakness that instantly occurs in both legs.

Both legs will twitch violently when sitting and particularly when lying down. The spasms always consist of two kicks, and cause considerable pain and some brace flexing when the braces are on. They are very frequent when I go to bed and can persist for hours. They are getting common when I sit as well. For the most part only one leg is affected at a time. That is, if the right leg is spasming, the left won’t. Last night, for the first time, both legs were affected at the same time. I can’t see any triggers for these actions nor is there any relationship to the trigger movements noted above. I’ve started taking 100mg Tegretol 3x a day after each meal. So far there are neither side effects nor positive results.

Finally I’m somewhat incontinent, mostly at night. By incontinent here I mean I feel the urgent need to urinate but can’t make it to a urinal in time. I need to urinate every 1.5 to 2 hours at night. I’m passing large quantities of urine and in the vast majority of instances the stream is strong, steady, and leaves me feeling empty. After an episode two nights ago when I was sitting at the computer and got up and failed to get 15 feet before beginning to spontaneously strongly urinate, I’ve requested Detrol LA and will start taking it today.

Other than the above I feel fine. No headaches, no backaches, no sinus problems, no physical problems from 2 inches above my groin to the top of my head.

I’m pretty much immobile as the TROM slips easily and always and I don’t trust my gait or my foot positioning at all. I’ve been offered an immobilizer, but the one I had post surgery was worse than the TROM in terms of slippage. It was awful, and wearing it would keep me housebound as I can’t ride in a car with it on (unless I hang a foot out a window!)

I have an MRI of my cervical and thoracic spine scheduled for 21 Aug (lumbar was done on 7 July), an appointment with Dr. Furia on 22 Aug, an urodynamics test on 25 Aug, an appointment with Dr. Fredericks on 27 Aug, an appointment with Dr. DeNubile on 29 Aug, and an appointment with Dr. McGowan on 2 Sept.

[Hindsight note, April 2012. None of the appointments added to my overall knowledge or improved my condition. All of my doctors including my primaries (I see anyone in a group of three) and every specialist I’ve seen was provided with a copy of this document and a cover letter. I sent copies to my insurer as well. As far as I can tell no one read the doc or took any action. That’s typical of what happens in modern medicine when the patient dares say anything other than yes, no, or thank you to a doctor, especially any doctor who is in a hospital when the patient is trying to communicate.]

And Yet Worse

I feel like I’m wearing heavy boots on both feet. My left foot felt almost like it was burning on the sole when I got up, but now that subsided to the numbness of yesterday, only a bit more severe. My lower right thigh is more painful, and my right foot is now showing a distinct propensity to turn outward. It’s hard to keep the sole flat on the floor.

The Detrol LA seems to work as advertised from the get go.

The Tegretol seems to be working finally. There are still spasms but their frequency and violence is much reduced. There are some side effects: slight dry mouth, slight stomach upset. Neither is at all severe. I have not eaten anything yet this morning.

I can trigger the lower abdomen pain by raising my right arm only. However, the effect is not immediate, nor does it occur when I’m sitting. It only happens when I’m standing. If I raise my right arm to shoulder level the weakness and pulsating pain start at a low level maybe 20 or 30 seconds after I lift the arm. A fully elevated arm will trigger the same milder (but severity increases over time) reaction after 10 or 15 seconds.

I was unclear as to when the abdominal pain occurs full time. It happens when I’m standing and my posture isn’t perfect (i.e., I’m leaning forward on my crutches), or sitting leaning forward, or on either side or my stomach when prone. I’m OK standing straight, sitting with good posture or on my back prone.

The stairs (a flight of 12 lower, a small landing, and 3 upper) are increasing difficult and I suspect will become impossible in a day or two. I made two trips down and up yesterday and they were slow and very difficult. I use a single crutch and the heavy banister as assistive aids. I always have a brace on when on the steps and I think starting in my trip down in the next 1/2 hour, I’ll use braces on both knees.

Most of the work going up seems done by my left (banister) arm; essentially I pull myself up. I back down, so that a knee buckle doesn’t pitch me forward down the steps. A serious buckle and I seem to have at least one a trip just forces me down on steps I’ve already passed. I’m now afraid of the steps.

Right now the lower patella area of my right knee is throbbing at about 4 out of 10 pain level. This is new, started a few minutes ago as I sit here at the computer with good posture (i.e., no abdominal pain). It’s about a 4 out of 10 and I don’t have the slightest idea what it is or what’s causing it. It’d be nice if it just as mysteriously stops.

Trying.....

I was scheduled for an MRI last night at 8PM. Took my Valium and then failed to get either brace on and started down the stairs very carefully without a brace. Couldn’t do the top three steps and retreated to try the braces again. Still, no go. So back down the stairs again, very slowly. Not too bad and then at the bottom I sort of slid to the right and down on the last few steps. Got up easily, and then couldn’t get my shoes on. In frustration, I called an ambulance and head for the ER at DCMH.

The less said about that the better. A joke. Couldn’t even get the unstable right knee examined. Went home. Fell backwards trying to get in the front door as my right knee buckled. Took about a half hour to drag myself up the step and in and to the base of the stairs, where it only took 5 real painful minutes to stand up. Managed to get up and to bed where I managed a painful and fairly sleepless night.
In the morning the feet felt about the same, but my right knee and thigh were significantly worse and painful. Getting up from the bed or a chair is becoming much harder. Both thighs hurt a lot and I need to keep my CG very carefully over my legs. Definitely getting worse.

Got another MRI appointment for 11AM. About 9:45 I tried to put the TROM on. Leg was very stiff and painful. After a couple of tries I changed to the new functional (Donjoy Drytex Wrap in XL, nice brace). No problem, got it right on. And the slid off the bed right onto the floor. During the night the mattress shifted about 6 inches toward the windows (something in the frame and box spring isn’t level). It just wasn’t supported by the box spring. So just before 10AM there I am on the floor next to the bed. I try to get up or move with no luck at all. Every time the right knee contacted the floor or anything the pain was sufficient to cause me to scream. After about 30 minutes of struggling I call and cancel the MRI and take a 15-minute rest. I realize my best chance is to shimmy to the base of the bed and try to use the cedar chest there to crawl up. About halfway there and lying on my back, I try shoving the mattress back over the box spring. I had tried that right at the beginning but couldn’t get leverage or a decent angle. Down toward the corner, I manage to get a better angle and finally shove the mattress back into place. Since my chest was now near the bottom corner of the bed I get a pillow under the damaged knee and try to get up. It isn’t easy as both legs are dead weights. I finally lurch up and after a scary moment or two, with my legs hanging over the side, I get control and am to rotate onto my back with most of me on the bed. It was now 11:20AM! About 20 minutes later I go and check e-mail and then come back and more or less pass out for the most of the afternoon.

I do make a few decisions and act on them. I speak to the patient management folks at Aetna and fax them the summary about my condition I created yesterday. They agree I would be better off in the hospital where there’s a chance I’d be looked at as a whole person instead of as a bunch of slightly related symptoms. However, they can’t compel a doctor to admit me.

As a first step in my new attack on my problems I cancel all specialist appointments. If I see a specialist I want it to be in a hospital where tests will be carried out promptly. Next step is to get one of the three doctors in my primary’s office to admit me.

Beware What You Wish For

August 25th

Getting up and getting going is very slow and very painful. It takes, literally, hours.

I’m determined to get into the hospital and get to the bottom of whatever is going on today. By the time I reached the bottom of the stairs, I realized I don’t have the strength to get back up them.

I need to wait until John gets home to help me get my shoes on. I’m that weak. And we’re talking slip-ons here.

I did call my primary, Dr. Oteri, and he told me to get admitted through the ER. Apparently he also called them and told them to admit me.
Once John gets my shoes on, I call 911 again and manage to just barely get outside the door so there wouldn’t be a dog problem. A supervisor shows up first and asks lots of questions. I assume that’s because I was ambulanced in last Thursday night. It was pretty obvious to him that I was barely able to stand, even leaning against the column that holds the porch roof.

The same paramedic crew that picked me up Thursday showed up. I assume they had interesting thoughts about me as well. As soon as the ambulance starts off, with me in it, we hear the hospital has gone on total divert. The ER is full. They’ll take me to another ER, but that’s not a good solution today. I need to be in DCMH. They ask me if I can sit in a wheelchair. I can and say so.

The plan now is to transfer me to a wheelchair outside the ER and push me into the triage area in the chair. I’ll have to wait a while, but this will get around the divert.

I sit in triage waiting just under an hour. All that I had to eat and drink since I got up was about 10 ounces of Diet Pepsi I used to wash down my meds. The vending machines in the triage waiting area were a sore temptation, but I resisted them. Had I had to wait 10 or 15 minutes more I would have succumbed.

Finally the triage nurse wheels me into her office and asks why I was there and some history questions. I then go to wait for the registration clerk.
Registration takes a while but goes smoothly. I’m wheeled out and toward the main hospital but don’t have any idea where I’m going or what is happening.

We go to an auxiliary ER area called Fast Track (it used to be used for fast track admissions). I’m placed on a stretcher bed exactly as wide as my shoulders. It has a vinyl surface. There are only two staffers in this room: Dr. O’Donnell and a nurse, Mr. Hansen. They are both able and nice. After a thorough exam Dr. O’Donnell decides I should be admitted.

That’s a little after 1PM. A few minutes later a major problem arises. The hospital is, for the moment, out of beds. It would hours until I could be moved to a room.
S
o there I lay. I had a book and a bit of privacy. As the afternoon wore on, things looked worse and worse. I might get a room by midnight, or maybe I’d get to spend the night in the ER.

My area shut down at 11PM so sometime before then I would have to be moved over the main ER where sleep wasn’t going to be easy.

About 5PM, the nurse figured out I had nothing to eat or drink all day, so he. got me a small bag with a turkey on white sandwich, 4 ounces of cranberry juice (not drinkable), and two cracker-sized graham crackers.

Back to the Main ER

Right around 8PM I’m moved to a real (yes!) hospital bed in a remote corner of the ER. It’s obvious that this area, which has three beds, is an overflow area and was once primarily a storeroom. It has heavy traffic, lots of noise, and a good deal of light.
The bed’s privacy arrangement are two curtains that don’t quite meet — 6-inch gaps at both front corners. But what the heck. It’s a real bed and far more comfortable than the stretcher bed. It even has sheets a pillow and a coverlet. Wow! Big time.

It’s a bit warm as well. The ER is currently using portable AC units as the hospital construction has apparently disabled their usual units. These units are very noisy and put out a good deal of cold air. Unfortunately, the only unit near me is quite close and pointed so I got no benefit from it. Still, the ambient temp is far better than the absolutely frigid Fast Track area, where it was in the very low 60s tops.

After a while I manage to resign myself to spending the night in this bed. My cell phone, which was working in the other area, since I was right next to an outside wall, can’t pick up a signal here.

Then the big shock. Just after 9PM a transport aid shows and starts to gather my belongings. I ask him why, in what I imagine was a hostile and suspicious tone. He tells me they have a room for me upstairs, and just like that my mood goes from way down to way up.

I don’t even have to struggle in a wheelchair. They move the bed and me up two floors to Room 360 on the general medical floor. It’s a nice single room normally reserved for infectious disease cases. The room can be kept at a slight negative air pressure so that no infectious air can escape the room when the door is opened.

My Excellent MRI Advanture

A few days and many x-rays and MRIs later, I get moved to a normal room on 3 East. The hospital needs my special room for someone with a possibly infectious disease. It’s not quite as nice a room as 360 and I have to share a bathroom, but it’s still a private room.

Late in the morning I take another trip to the MRI center. I’m set for a head and neck MRI this time. We’re grasping at straws I think.

The MRI starts, and about 10 to 15 minutes later the techs come running in saying the fire alarm is going off and there’s smoke throughout the building. The MRI is so noisy I couldn’t hear a thing. They unceremoniously yank me out and up and roll out the wheelchair I came down in. And we’re off.

There some smell of smoke in the hall outside the MRI center, but nothing serious. The only problem is the MRI center is in a true basement with no direct exits to the outside that don’t involve elevators or steps. Of course, the fire department who are already arriving in force, have shut down the elevators. So I get to haul myself slowly up the stairs, barefoot and in a hospital gown. The techs are great, staying with me as slow as I am. There’s a large fully equipped fireman on the landing, calming those people who are freaking out.

When we get to a lobby with good access to the outside, the techs find me a chair and then a wheelchair. After a short wait they wheel me outside — the sun feels great — and up the driveway to the main hospital entrance and back in and to my room.

It turns out that was no fire in the building. However, some landscaping mulch near the building did burn and the smoke was sucked in the building’s ventilation system. That’s why it was detected all through the building.

We Have a Diagnosis!

The next day starts with yet another set of MRIs. I’m using MRI time at an incredible rate. I wonder, but not too hard, how that will go over with Aetna. I need to know what’s wrong and if it can be fixed. Spending more money now is likely going to mean spending a lot less later. I’m still going downhill, and if the slide is stoppable, now’s the time.

Most of today’s tests are duplicates of those scheduled, but interrupted yesterday during the smoke alarm. I never did go back to the MRI area after I got returned to my room.

Around 3PM my neurologist, Dr. Slater, comes in and says he sees a problem on my thoracic MRIs. I have what he calls a meningioma on the lower part of my spine. He explains that a meningioma is virtually never cancerous. It’s a calcification on the spinal column that can, if it gets large enough, and if it’s in the right place, press on the nerves that run in the spinal column. He says that they’re common, but only detected if they affect nerves. That’s what he thinks is going on in my back. He further says that this could not have started only a few months ago. Meningiomas large enough to see take years to grow.

Dr. Slater says that fixing a meningioma is relatively straightforward. They tend to peel off the spinal column. Some patients who have the surgery are instantly cured; others take a while to heal. It all depends on the underlying nerves and how badly they’ve been damaged.

I won’t be able to have the corrective surgery here. DCMH has no one who does spinal neurosurgery anymore. Dr. Slater says the best in the business is a Dr. Marcotte at the University of Pennsylvania Hospital (HUP). He tells me that he asked a good friend at Jefferson (HUP’s arch rival in the area) who was best, and he said if he needed this kind of surgery Marcotte was unbeatable. Dr. Slater has connections at HUP as well and has already put in a call to Marcotte.

I am elated! I now know what’s wrong. The symptoms all fit. The best part is there is hope for a surgical correction very soon.

Final Tests & a Surgical Referral

They’re not about to let me out of DCMH without the maximum number of tests. I’ve been MRI’d from the top of my skull to my knees, some areas being covered two or three times. That’s because there are two kinds of MRIs: regular and contrast where some sort of contrasty medium is inserted via your IV hookup point to make something or other show up clearer. That accounts for two. Three occurs when the first test isn’t completed as happened to me on a couple of occasions.

They’ve x-rayed me as much they want. I should glow. To combat my tendency to move my legs involuntarily, I went to the digital x-ray room, where, this week being this week, I wound up getting locked in the room alone when the door shut and no one could find a key. It took 30+ minutes for the techs to find another person with a key. I was fine; they were a bit panicky. I offered to hobble over to the door, about 15 feet from where I was and open it from the inside. That would have been easy. However, I was ordered NOT to move, and not to get up. I wasn’t about to fall, but they wouldn’t take the chance.

Today’s final tests are to be CAT scans. That’s almost fine: the machine is quite open and far less noisy than the MRI. It’s also not in the subbasement, but up on the 4th floor near radiology. There’s even a window in the waiting area that looks out over the new ER and ICU construction, Lansdowne Ave, and almost to our house. The only problem is that having a CAT scan is like having a couple of hundred chest x-rays. And that’s not good for anyone.

Although the diagnosis is a problem in my thoracic area, fairly far down my spine, Dr. Slater wants to rule out a few other possibilities that could slip by in an MRI. The CAT scans are of my head and upper or cervical spine.

The process is pretty speedy and I’m back in my room in time for lunch. I’ll be going home later today, after Hilary gets here and I have a last consult with Dr. Slater.

Labor Day Weekend

I went home from DCMH yesterday. Enough with tests. I’ve spent what feels like four solid days in MRI and CAT scan machines. We have some sort of a diagnosis and I have an appointment with a highly touted surgeon next Tuesday.

Now there’s a chance of getting somewhere. Maybe the problem, whatever exactly it turns out to be, can be fixed fairly easily. Maybe I’ll get lucky.
When I got home last night, the stairs were a real challenge. I won’t be going up and down much this weekend.

I spend a lot of time Saturday and Sunday researching meningiomas and the doctor I’m to see on Tuesday. The doctor’s bio and photo on the Penn Health web site show a nice looking man, who happens to be Canadian by birth. I won’t hold that against him though.
As for meningiomas, there’s lots of information, and some pretty graphic artwork and photos. The operation shouldn’t be too bad, as I’ve been lead to believe the problem is on the back (nearest the skin) side of my spine. Problems most often arise when the meningioma is on the front of the spine and difficult to get at. Of course, if mine was on the front it wouldn’t be affecting the spinal cord, and I’d probably not even know about it.

The operation normally takes 90 to 120 minutes. Results vary, with some patients just getting up and walking with no neuropathic symptoms immediately afterward. I suspect that since my problems are at least several months old, I won’t be that lucky. I may have seriously damaged nerves that may take a long time to recover. Nerves are very slow healing. I just hope no nerves have died or are past the possibility of recovery. We’ll see, and I suspect we’ll see real soon now.

Hilary brings my meals up, but mostly I eat the new Berry Burst Cheerios, which have chunks of dried fruit in them. I really got to enjoy plain Cheerios while in DCMH; the Strawberry Cheerios are even better. I figured that they had to be better than the other kind, Multi Berry, with strawberries, blueberries (ugh), and raspberries.

Wrong again. Multi Berry is spectacularly good. That’s the bulk of what I eat these days. I manage 4 boxes, two of each flavor, over the weekend.

With no pressing reason to go downstairs, I don’t. I sleep as much as possible because, as last week showed, sleep is a precious and sometimes rare commodity in a modern American hospital. You’re poked, prodded, and talked to at any time someone feels the need.

The Big Day - Into HUP

Tuesday September 2

Today I see Dr. Paul J. Marcotte, the highly touted back surgeon. I have a huge pile of MRI and CAT scans for him. I’m quite sure he’s going to fix my spine and I’m optimistic that he’ll solve all my neurologic problems with his scalpel and skill.

The operation he’ll have to perform is a thoracic laminectomy, and from what I’ve read on the Internet, it’s not minor surgery, has maybe a 70-80 percent chance of clearing everything up, and has few serious common complications.

(The Internet has maybe too much information on medical procedures. There are numerous descriptions, often in technical language, and more than a few videos of actual operations or animations — these are the best. At least in my case, I find all this data comforting, but I can see how it could frighten many people.)

Getting up was pretty painless. I manage, using my grabber stick, to clean up most of the bedroom and my office.

My appointment with Dr. Marcotte is in the late afternoon. Hilary comes home early to take me. When she puts my brace on (she can always get it on higher (which is better) than I can.) We fail to notice the outside lock isn’t locked at 0º(no bending), but is free and will allow free motion.

When I start down the steps, my knee buckles completely on the second step (remember the lock that isn’t locked), and I fall gently to the floor, body on the second floor, feet on the landing.

(I always back down steps to protect against exactly this event. When the knee goes, I fall towards the stairs. If I was facing forward, I’d likely pitch forward. If my death grip on the banister fails, I’m in real trouble. In this particular case, I’d probably be saved by the outside wall on the landing, but if I was on the lower twelve steps, I’d wind up planted in the foyer.)

I figure that if the knee is that weak (I still don’t notice the unlocked brace), I’d better go down the remaining twelve steps on my butt. That’s exactly what I do. The newel post at the bottom is strong enough for me to easily stand up. As soon as I stand up, I have to sit down again so Hilary can put my shoes on. When I stand up again she has to dehair both of us as I have so much dog hair on me from falling and sliding down the steps that I’m beginning to look way too much like a Keeshond.

Getting to the car is, uh, interesting. I almost fall on the porch when my feet got a bit tangled stepping down the very small step from the door. My left foot catches under my right heel, and I simply don’t have the control to move them apart. Well, I do, but it takes a frustrating few minutes. Then I’m terrified by the step down to the driveway from the walkway. I need Hilary to support me. Finally, I make it to the car. As I got in, I notice the brace is unlocked and bending freely. Good grief. I’m lucky I get to the car without seriously hurting myself.

The Hospital of the University of Pennsylvania (hereafter HUP) is where Dr. Marcotte’s office is located. The entranceway is 3 cars wide and it’s jammed when we arrive. When we get to a reasonable unloading point, we ask for a wheelchair to be brought to the car, and are told that I’d have to get myself inside to get one. Not a likely scenario.

Hilary takes the bull by the horns, puts the car in Park, and leaves me to get a wheelchair. The hospital has a revolving front door that’s huge — 30 feet in diameter— designed to allow patients in wheelchairs easy and safe access. It’s amazing, and it works perfectly.

After a short wait in the neurosurgery waiting room, we’re taken to a conference room to wait for the doctor. He arrives a few minutes later having looked at the films we surrendered when we checked in.

Dr. Marcotte is medium-size, very pleasant man, dressed (today) in scrubs. He sits opposite us and we have a minute or two of small talk before he drops a small bombshell.
He doesn’t think I have a meningioma at all. He thinks Fred (my pet name for my friendly problem) is a combination of arthritic bone spurs and maybe a slightly herniated disk.
The surgery he proposes is very similar to that for a meningioma; both are thoracic laminectomies (hereafter lami). We work down my question list and both of us are satisfied with all his answers. He doesn’t seen to be spinning or hesitating and he speaks clear English (although he’s Canadian by birth). He’s not willing to hazard a guess at how much function is already lost, or how much might come back. He does say there is sure to be some loss and in-patient rehab is definitely on my schedule.

We ask when he wants to operates and he replies “As soon as we can.” I’ll need a day for some pre-op testing and medication, so Thursday’s the day. I’ll be scheduled to be the first one in an OR Thursday morning. I’m immediately admitted to HUP.

Before he leaves us, I ask him to hold his left hand out so I can see its steadiness. He’s a lefty. He smiles and does so. Very steady. Then, with perfect timing, he raises his right hand, which is shaking violently, and says, “But this is hand I cut with.” He has trumped my weak joke and knows it. It’s great to find a surgeon with a sense of humor. Most are way too pleased with themselves to have one. I later find out Dr. Marcotte is an amateur hockey player and known for his informal stand-up comedy. All that is very reassuring.

More to come: my day is really just starting.

HUP is an Active Place

The first day at HUP, continued.....

Dr. Marcotte tells me I’m going to be admitted immediately. I’m sure he made the decision from the x-rays and MRI scans before he even laid eyes on me. He asked if Hilary could go home and get what I’d need. However, his decision was no surprise and I had my small bag, with books, spare clothes, and other necessaries with me.

Normally admission can be delayed an hour or more (Hilary’s cousin Bill spent about 40 hours in the ER with esophageal cancer while waiting for a room!) Instead of making us wait, the doctor’s staff gives us meal vouchers for the hospital cafeteria, and returns my co-pay as it is covered by my admission.

After a quick meal (hospital food), we go off to Admitting where I’m promptly assigned a room on Silver (hospital talk for Silverstein Pavilion) 9, the neurosurgery ward.

As soon as we get to my assigned room, I can guess why the bed is available. The man in the other bed is watching TV and the volume is way up. Oh, well.

It’s about 6:00, and the shift changes at 7. My nurse, Ray, works up a very complete history for my chart. He’s thorough, nice, and very tired, as he’s nearing the end of a 12-hour shift. When he’s listening to my heart and lungs he spends a very long time and seems very intent. That doesn’t bode well.

Finally, Ray tries to start an IV connection on the back of my hand. He fails after two tries. It seems to be the rule in al hospitals that I’ve been in (3 so far; that’s a note from 2012), that people get two tries at starting an IV. After that, another person is called in. That’s a great rule for patients as it makes all the IV starters better and cuts down on unneeded needle sticks, which are never nice.

Ray leaves; it’s now after 7, and so does Hilary. Dinner arrives, but before I can eat it, an x-ray tech shows up with a portable machine, installs me in the high back chair next to the bed, and takes a chest x-ray series.

I quickly eat. The food is OK. As soon as I’m done, two more techs come in and do an EKG. I’m beginning to think Ray really found something serious.
After they leave the night nurse, Lisa, shows up. She’s friendly, but also not too good at starting IV connection points. She finally gets a line in, but it’s painful and I imagine it’ll need redoing fairly soon.

After Lisa leaves I discover that the phone system here is for the birds. It’s awkward and expensive. Some long distance calls are simply impossible or must be charged to a credit card at near airplane phone rates. At least I can call home free.

Hilary says she fell after she got home, tripping over something by her computer, but she’s OK. I hope so. I’m not sure she’d tell me if she wasn’t. That call ends about 8:30. We’re both very nervous.

At 8:45 three neurosurgery residents arrive and tell me I’m scheduled for an MRI, RIGHT NOW, like 5 minutes ago.

I’m still wearing the shorts and T-shirt I wore earlier today. There hasn’t been time to get me changed and gowned.

I get into the wheelchair they brought and we speed off to the basement MRI center that’s actually under the weird red pyramid that sits in the courtyard the cafeteria overlooks. As we’re rushing down corridors and elevators I’m hastily reciting my symptoms to the residents, and one of them is actually trying to take notes. Haven’t they ever heard of pocket voice recorders? I have one in my bag upstairs.

Once we reach the MRI center, the residents leave me in the care of an MRI tech. I need to be gowned and my shorts need to vanish as they have metal that will not please the MRI device. However, I can leave my wedding ring on as gold isn’t affected or reactive to magnetic fields.

Once I’m set I transfer to the insertion table, get pushed through a few rooms, and right into a smallish (slightly less than my shoulder width) MRI with indirect lighting throughout and a stiff breeze coming from above my head. It’s nice and cold, my preferred conditions.

My leg is now twitching a lot, and I’m having lumbar and thoracic scans, both regular and contrast. I’ll be in the machine, which is a new, faster machine, for just over an hour. There was no time to Valium-prep me and since it didn’t help at all while at DCMH, this was an interesting experiment. The lack of a sedative proved not to be a problem and all those prior doses of Valium and Atavan were a waste.

After the MRIs a Transport aide takes me back to my room and bed. Or so I think. Around 11:30, yet another neurosurgery resident shows up. I meet Eric, who I’ll see a lot of during my stays here. He gives me another complete physical and goes over my entire history. He’s with me for about 45 minutes.

About 15 minutes after Eric leaves, another tech comes by and draws a lot of blood for a complete blood work up.

And at 12:40AM my first day at HUP is actually over.

My Not Excellent Nuclear Imaging Adventure

Thursday morning dawns, and a neuro intern shows up for the mandatory neuro tests at 6:30. I’m in what can most charitably be called a testy mood. In reality, I’m somewhat less pleasant than that. I’ve been informed that due to something some doctor(s) saw on my EKG or chest x-rays from last night, I must take and pass something called a nuclear heart stress test. That means the operation is probably either off or off for a couple of days. I’m in what can most charitably be called a testy mood. In reality, I’m somewhat less pleasant than that.

Some poor intern shows up at that exact moment and wants me to sign the consent for my back operation that I now doubt will happen. I flat refuse, and, regrettably, not at all nicely. It wasn’t the poor kid’s fault and now he’s likely in trouble for not getting my signature.

Someone tells me that if I do OK on the test, maybe I can still get into the OR today. But that means late today and all the OR personnel and Dr. Marcotte and his assistants will be tired. It’s the worst time to have a scheduled operation.

I’ve been promised I’ll be taken down to Nuclear Imaging as early as possible. That translates to about 8:30.

I’m taken to Nuclear Imaging, which is in a location that I could never find on my own. After a few minutes of waiting, I’m taken into a procedure room where I’ll be injected with a special stress chemical. The nurse is really good, explaining the procedure in clear English. Her explanation is complete and she answers my questions to my complete satisfaction. Unfortunately, she turns out to be the only caring, decent person I run into in NI.

Soon after injecting the chemical, with a doctor and the nurse carefully monitoring everything, I start to get nauseous. I’ve been warned of that likelihood. Since my heart has already been adequately stressed, so I’m given something that reverses the reaction, and I immediately feel much better.

The next step is the first of several unhappy surprises. I get rolled into the hallway and told I need to wait 45 minutes for something or other to happen. It’s cold, uncomfortable (the gurney is hard and small), and very public. Lots of patients and staff are constantly walking by. I get a nurse to get me a magazine. If I had known about this wait I would have brought a book. However, the consent talk for the test left this part of the procedure out. I can well guess why.

After 50 or 55 minutes I’m wheeled into the gamma ray camera room and inserted into the machine. In size and enclosure environment it’s like a CAT scan machine. It works a bit differently, rotating right around me. Creating the films takes 35 minutes. The procedure turns out to be very uncomfortable, and my leg twitches violently and nearly continuously.

When the procedure ends I roll on my side to try to get some pain relief. I figure the whole procedure is over and all is OK. I just, barely, made it.

To my complete horror, I told, as I’m being rolled out into that cold hall again, that the procedure is only half over.

Something else will be injected, which will reverse everything after another 45 minutes, and then another set of pictures will taken, so I have nearly two more hours of severe discomfort to look forward to.

I’m still game, and get the injection. I also ask, well, actually, demand some pain medication. I’m told they’ll need to call up to Silver 9 and have a neuro resident come down and administer the drug. I need a doctor to give me two pills and a plastic cup of water?

It takes 40 minutes for Eric to show up with some pills and water. I take the Percocets and figure on waiting the 45 to 75 minutes it will take them to have any effect. I see that Eric still has the consent forms for the operation that I have repeatedly refused to sign. Out of guilt over what I said to the intern earlier, I guess, I offer to sign them and I do so without reading them (something I’ve never done, before or since).

What that whole issue came down to was silliness on my part. They, the neurosurgeons and cardiologists, were causing me grief so I’d cause them some. Really childish and silly, I want Dr. Marcotte to do the operation and to do it as soon as possible. I was just ticked at what I considered an unnecessary delay,

Five minutes after I take the Percocets the camera people come to wheel me in to the camera room. I protest. I’m rudely told that they have a schedule and I either go now (in real pain) or never. I’m hurting enough to be equally rude, and tell them the test is over.

They simply accept that, with a rude comment along the lines of it’s my funeral, and have a Transport person called to take me back upstairs. They never tell anyone I canceling out. No doctor, no nurse. They just send me back. It’s up to me to me to tell a very surprised Eric what has happened.

The whole fiasco would not have been a problem if the cardio team had accurately described the steps and duration of the test. I would have taken books to read and pain meds at the proper lead times so I could tolerate the testing. Why they failed to tell me that information is beyond me. It wouldn’t have changed anything. To spring the multiple phases and long intermediate waits caused many problems.

Having to wait lying on a gurney in a busy public hall is also a very bad idea. They really need a holding area down in NI. They don’t have one because, with the exception of the first nurse, they do not give a damn about the patients being tested. They’re much more interested in openly discussing their social lives and plans.

The morning is a simply horrible experience. It also looks like there’ll be no operation for me today, and I’ll probably have to repeat the whole test tomorrow. At least I’ll be properly prepared then.

My lunch wasn’t waiting for me when I got back upstairs since I could neither eat nor drink. The last food I had was a small snack about 8 last night and I’d had a few sips of water about 11:30. I’m getting seriously hungry and thirsty. I call Hilary to tell her what has happened.

About 3 PM one of the residents arrives and announces that I "passed" the first part of the stress test, thus the second part isn’t needed, and I’m cleared to go to the OR that evening. I have no idea what I passed or what passing actually means. It still all seems a joke or waste of time.

I’m scheduled to head down to the OR suite between 4:30 and 5PM.
So I call Hilary again and she comes down.

Digression: The Importance of Stress Tests

It's vital to know that a patient's heart can stand the stress of the planned procedure. It's obviously very important, but might even be more important to the surgeon.

For a surgeon, a bad scenarios is for the patient to suffer non-neurosurgery related problems while in the operating room. Obviously among the very worst scenarios is a fatal heart attack.

All these scenarios are bad for surgeons because of the associated reviews, possible censures, and tons of paperwork. Not to mention the death of a patient in their care.
If the surgery leaves the patient paralyzed (the worst and a highly unlikely outcome of my planned neurosurgery) that’s a work accident and, I’d imagine, more acceptable to the surgeon. That’s not to say they expect such outcomes nor do they ever take them lightly. It’s just that a condition-related bad outcome is easier dealt with than a non-condition-related bad outcome.

I look at the situation very differently. I’m constantly getting worse. No intervention looks like sure loss of function below my waist. Every day I find I can no longer do things I could do the day before. For me, paralysis is worse than heart problems. I know my heart is not in dire shape. It may not be perfect, but it could be much worse and I’d still keep going. Paralysis is simply a slow ugly death.

Others can legitimately worry more about possible heart problems, but I’m much more afraid right now of paralysis.

I do understand the surgeon's concerns and analysis of my condition. Whatever problem I have with my back won’t be known for sure until the doctor opens me and looks. However, we know the point of damage is low on my back (relatively) and does not affect my diaphragm (breathing). That’s absolutely true.

Thus, while my proposed back surgery needs to occur soon, it’s not an emergency situation. I’m an excellent candidate to get bumped down on the surgery schedule by a true emergency, That’s also reasonable.

Maybe coming to HUP, as fine as Dr. Marcotte undoubtedly is, looks more and more like a bad choice. But that’s the choice I made. Inexperience hurts.

(Postscript 2012: I was wrong about regretting coming to HUP, but the reasoning above still seems right to me.)

My Back Is Fixed?

I’d love to describe the details of the operation, but unfortunately I can’t. I once had a tendon in a finger repaired and the surgeon actually set up a mirror so I could watch him work. However, there was no hope of that in this case. I remember chatting with the anesthesiologist in the pre-op prep area. He was a Scot or an Irishman; my memory was already hazy. There was a question about my wedding ring. It’s never been off my finger since it was first put on — almost 12 years ago. I’ve worn it through other operations, a couple of them major. But HUP insisted it go and go it did. It safely made it to Hilary in the OR visitor waiting area. And then all went dark.

I barely remember the first few days after the operation. I was kept quite pain free. Everyone said the operation went well. Even the doctor.

I did make one decision I those days, and it was a doozy of a bad decision. Instead of going to rehab at the excellent HUP facilities, I decide to go DCMH Rehab. I’d never seen their facilities and knew nothing about them, but they are 2 short blocks from home and that’d make things much easier for Hilary. It is not true that I made the decision based on the fact that HUP provides only Diet Pepsi while DCMH is a Diet Coke hospital.

 

Off to Delco Rehab

It should have happened yesterday. However, the folks here at HUP and the folks at DCMH couldn’t get their act together yesterday. HUP wanted me out yesterday, I think, but the blame for failing to get me to DCMH is shared.

When the HUP staff told me I’d be going Tuesday morning, I assumed that meant 11:59 AM.
Much to my shock, two transport people walked in at exactly 9 AM and said, "Let’s go."
I get on a gurney and head right out the side door onto Spruce St. The ambulance is double-parked 30 yards away so I get a whole minute or so of sun and outside air.

The driver has a strange idea of how to get to DCMH. It’s a straight shot out Spruce and even if the traffic is awful, only about 30 minutes. Instead we head into South Philly down to the airport and back up Island Ave and Lansdowne Ave. This route did avoid traffic, but took nearly 45 minutes.

At DCMH I’m immediately moved into Room 206 East in the Rehab unit. It’s a private room as are all 24 rooms in the unit. My admission paperwork was done in advance. The room is on the ground floor of the hospital; 100-numbered spaces are in the basement.

The nurse does the mandatory workup, and I’m provided with both a walker and a wheelchair. One of the main rules in this unit is that we are never ever to get in or out of bed without a staff member present to monitor and help. Right now there’s not much chance that I’d try anything like that. The reason I’m here is to learn how to do all that stuff all over.

I meet the physical and occupational therapists I’ll be working with, but while I’m here all day, no PT or OT sessions are scheduled today. They’ll start tomorrow.

The food at DCMH is better than that at HUP and the private room is relaxing. The cola of choice here is Diet Coke; not the Diet Pepsi that’s all that’s available at HUP. That’s a big plus in my book.

I Meet Rehab and Rehab Meets Me

Right around breakfast the next day, I meet Dr. Stevens, the doctor in charge of the rehab unit. I’ve been told he’s really good in dealing with physical problems. I haven’t been told he’s somewhat different and the absolute master of the rehab unit.

Actually I hear Dr. Stevens long before he makes his appearance. He’s loud and his routine is designed to reassure the older patients. After he says "Good Morning," he announces what day of the week today is. Loudly. I guess many of his patients don’t hear all that well. As far as I can hear, and I’d rather not, he says the same exact thing to everyone.

Soon Dr. Stevens comes in and tells me it’s Wednesday. He asks me how I feel, but doesn’t wait for an answer. He does ask me to sit up so he can take a look at the sterile dressing covered wound.

Dr. Stevens pulls part of the dressing back so he can see the wound. He’s not wearing gloves, but while I notice that, I don’t think anything of it. After looking at the wound and poking around the edge with his ungloved fingers, he puts the old dressing right back. He doesn’t clean or wash the area. This is 6 days after surgery and the wound shouldn’t really be treated that casually.

For some reason I’m scheduled for yet another MRI. The trip down is bumpy and painful and I get claustrophobic which is not at all usual. The MRI doesn’t go well. I ask for a stop only a few minutes in and I return to my room, with the intent to trying again later today.

Later that day, a nurse changes the dressing per orders. She does wear gloves, but makes no attempt to wash or otherwise clean the area. The orders say to change the dressing, not change and clean the wound. Apparently DCMH protocol is to follow the orders exactly.

I go to both the morning and afternoon physical and occupational therapy sessions. The therapists all seem very young, but maybe I’m just old. They seem to know what they’re doing. What I don’t feel is the push to do things that I felt in outpatient PT.
I’m still pretty weak and the therapy is tiring. A nap is in order.

One bad note: some of the neuropathic pains in my feet and lower legs seem to be returning. I have no idea why. The twitching is most gone thankfully. There have only been two brief episode of twitching since the surgery.

I’ve figured out how to get two cans of Diet Coke per meal, and what extension to call to get them sent up if they’re missing.

After dinner it’s back to the MRI and this time I get through the procedure. They gave me a tiny, useless does of Atavan in the morning, but for the evening they prep me with a solid dose of Valium.

Infection

My day nurse, right at the start of the shift at 7AM, tells me my back wound has bled a bit and oozed fluids through the dressing. A quick look at the pad hospitals use on beds to prevent bed sores shows the evidence: bloody spots and larger yellowish spots. She changes the dressing, but doesn’t attempt to thoroughly clean the area, as the written orders say to only say to change the dressing when necessary.

Dr. Stevens comes by soon thereafter and approves the nurse’s work. He also pulls the new dressing away to visually inspect the wound. He sees nothing that bothers him.

I go to the morning physical therapy session, but decline the afternoon session due to extreme tiredness. Declining sessions is a really bad idea, but I don’t find that out until later. It’s much better to go, and do little or nothing. Since the sessions always have lots of people and not that many therapists, that’s always a possible option.

My back continues oozing at an apparently increasing rate. The bed pad is really a mess by mid afternoon.

I ask to see a staff psychiatrist, as I’m getting very depressed here. The lack of progress or hope in physical therapy, the total joke of occupational therapy, and the back oozing are getting to me. The response is much quicker than I anticipated.

Dr. Jill Jardine comes by at about 4 and she talk for just over an hour. She’s unclear as to what I expect of our meeting. I just want to vent and get some reassurance. Neither the regular doctors nor the nurses have the time or ability to allow me to do that. Care visits rarely take over 10 minutes, and often much less. She leaves, but says her partner will come by tomorrow.

Hilary comes by after dinner and stays for a few hours. I fall asleep immediately after she leaves.

The Wound Festers

There are no changes in my routine. However, my attitude is going way south and I’m getting surly with everyone. That’s no fun for them, but then this rehab is not doing much for me either. It seems oriented toward very old people who are being coddled as the staff PTs try to keep moving. It’s more nursing home than rehab. I’m not sure the PTs even know how to work with my somewhat less than common condition.

I’ve given the staff the HUP-supplied instructions on the limits of my activity. These are what are commonly the lami precautions. Some are common sense: no twisting, no bending over. Some are easy to ignore: I can only use my feet to move the wheelchair; no hands on the power wheels are allowed. Sitting must be controlled to avoid jarring my back. A weight restriction of 5 pounds is absolute. No picking up of ANYTHING heavier than that. For example, I shouldn’t use my arms on chair arms to help myself up; I need to do that with my legs.

For the most part I enforce these rules myself. The staff is either unaware of the precautions or doesn’t subscribe to them. I must frequently refuse to do things. Although I explain my refusals, I’m clearly irritating at least some of the nursing staff.

I only make it to about half of my therapy sessions. While I don’t seem to be getting stronger or better, I am learning some interesting and practical techniques. I’m also given a new 26-inch grabber stick and a sock aid.

My back wound keeps oozing blood and what, at least to me, clearly is pus. The nurses and Dr. Stevens disagree and say the yellowish discharge is a normal serous fluid discharge. At least there’s no pain associated for whatever is going on in my wound.

Dr. Lipshutz, who is either Dr. Jardine’s boss or partner, comes by in the afternoon. I feel less depressed and somewhat better after we talk for 45 minutes. I guess I got more used to Dr. Himmelburg, the therapist I had been seeing before the knee blowout, than I realized. That’s a bit of a surprise to me and I need to think about that. I’ve never been much a therapy fan in the past, but it seems I’ve changed.

Weekends, Bah

Weekends in rehab are boring. The staff is reduced, and so getting a helper if I want to get out of bed takes much longer on average than on weekdays. This is especially true during the evening and night shifts.

Since my insurance mandates seven day a week therapy while I’m an in-patient here, I get one fairly short therapy session each day. Since my supervising therapist has the weekend off, these are not real valuable sessions, but they do get me out of bed and out of the room.

I have to say whichever of my neighbors watches the religious channel on his TV every morning, and has it on Loud, is getting real old. Apparently the gentleman has been there a while, and is one of Dr. Stevens’ “good buddies.” I can’t imagine a complaint by me would have any effect or be well received. Indeed, the care level might drop, if that’s possible.

Late Saturday night —Sunday morning 2 AM really — the neuropathic pain in my foot increased enough for me to want some additional pain medication. My orders allow me one or two 5/325 Percocets as required (PRN). I push the call buzzer. I wait. I push it again. This goes on for maybe 45 minutes and I’m not feeling any better. The opposite is true.

I decide to take matters in my own hands. I pull the wheelchair close and safely manage the transfer. Remembering to use my feet, rather than my hands for power (restrictions, not that my nurses are aware of them), I power down the 40 or 50 feet to the nurses station.

There’s one nurse in the station, awake and working. I forbear asking him why he’s been ignoring my call buzzer. His surprise at seeing me there is total.

I ask for the pain meds, and he asks me to get back to bed and he’ll bring them. I do that and so does he. However, I should not have had to make the trip. There was some risk as I don’t have the bed to wheelchair and back transfers down too well. I still use the walker as an intermediate stage.

The Eagles Can't Be This Bad

Another slow day at rehab. I notice that the pad on the bed has both small bloodstains and larger stains of some sort of yellow or clear fluid.

I point this out to the nurse when she comes in around 7:30. She says it's just my wound draining and she'd change the dressing as needed. She changes it now.

I have short PT sessions in the AM, but tell the therapists there's no way I'll come during the Eagles game this afternoon. I'm told virtually no one will come when the game is on.

The dressing needs changing again around noon and in the late afternoon. From no drainage to this seems odd and it didn't take long to get this bad. Hilary thinks it's infected, but the nurse says not to worry.

Hilary leaves during the third quarter, feeling distinctly ill at the way the Eagles are playing. I'd go too if I could. McNabb can't do anything remotely right, the defense is somewhere other than at the game, and the Eagles are getting killed.

The Eagles lose 31-10, to a team that lost 31-0 the week before. At least they scored this week.

The rest of the day passes peacefully, but in a haze.Another slow day at rehab. I notice that the pad on the bed has both small bloodstains and larger stains of some sort of yellow or clear fluid as it has for a few days now.

I point this out to the nurse when she comes in around 7:30. She says it’s just my wound draining and she’ll change the dressing as needed. She changes it now.

I have a short PT session in the AM, but tell the therapists there’s no way I’ll come during the Eagles game this afternoon. I’m told virtually no one will come when the game is on.

The dressing needs changing again around noon and in the late afternoon. From no drainage to this seems odd and it didn’t take long to get this bad. Hilary thinks it’s infected, but the nurse says not to worry.

Hilary leaves during the third quarter, feeling distinctly ill at the way the Eagles are playing. I’d go too if I could. McNabb can’t do anything remotely right, the defense is somewhere other than at the game, and the Eagles are getting killed.

The Eagles lose 31-10, to a team that lost 31-0 the week before. At least they scored this week.

The rest of the day passes peacefully, but in a haze.

They Decide What to Do With Me

Today was a very strange day. My back wasn't hurting, but was putting out a large amount of blood and pus.

I skipped morning PT trying to find out what was going on. More precisely I refused to go to PT and TO. There were no real answers. Around noon a nurse told me that Dr. Marcotte wanted to see me. However, by DCMH rules I couldn't leave the hospital unless they discharged me. I knew I had to see Marcotte, but if he didn't admit me to HUP, or re-admit me to be more precise, I wasn't about to go back to DCMH and their inpatient rehab. I was pretty sure they were not eager to take me. So I'd likely be stuck at home with an infection and any outpatient or ER medical care. That wasn't a good idea.

I expressed these concerns and then announced that I wasn't going. Period. I was talking to Hilary and telling her what was going on. She wanted me to go. Finally the head nurse at the DCMH unit said I could come back if necessary. I think she knew that my care was seriously substandard. I was still absolutely against leaving.

I missed afternoon PT and TO as well. I was in a serious snit, and not a great patient. Hilary came by at dinner time and we discussed the matter further. I was still very worried about losing my PT -- which I wasn't doing in any event -- and being in a truly horrid situation.

Hilary and I discuss the situation further when she arrives at dinner time. She wants to see Marcotte, and she has seen my back. I haven't. It's clear DCMH wants to be rid of me, and as soon as possible.

Finally I settle down and watch Dallas play the Giants on Monday Night Football. It's a great game; Dallas wins 35-32 in overtime. At least I don't obsess on my situation.Today was a very strange day. My back wasn’t hurting, but was putting out a large amount of blood and pus.
I skipped morning PT trying to find out what was going on. More precisely I refused to go to PT and TO. There were no answers there. Around noon a nurse told me that Dr. Marcotte wanted to see me. Somehow he heard about my back issue. I don’t think Hilary called him. I guess he has a really good team who do follow-up.
By DCMH rules I can’t leave the hospital unless they discharge me. I knew I had to see Marcotte, but if he didn’t admit me to HUP, or re-admit me to be more precise, I wasn’t about to go back to DCMH and their inpatient rehab. Anyway, I’m pretty sure they are not eager to get me back. So I’ll likely be stuck at home with an infection and no outpatient or ER medical care. That isn’t a good idea.
I express these concerns and then announce that I wasn’t going to HUP. Period. I was talked to Hilary and told her what was going on. She wants me to go. Finally the head nurse at the DCMH rehab unit says I can come back if necessary. I think she knows that my care was seriously substandard. I was still absolutely against leaving.

I miss afternoon PT and TO as well. I am in a serious snit, and not a great patient.

Hilary comes by at dinnertime and we discuss the matter further. I’m still very worried about losing my PT -- which I wasn’t doing in any event -- and winding up in a truly horrid situation.

Hilary wants to see Marcotte, and she has seen my back. I haven’t. It’s clear DCMH wants to be rid of me, and as soon as possible.

Finally I settle down and watch Dallas play the Giants on Monday Night Football. It’s a great game; unfortunately Dallas wins 35-32 in overtime. At least I don’t obsess on my situation.

Back to See Dr. Marcotte

By the time Dr. Stevens shows up at about 8, I’m in a thoroughly surly mood, and I want my infection treated here and now.

He wants me back at HUP apparently. I have no idea what’s been going back and forth, if, indeed, anything is happening. Suddenly though I’m under pressure from just about everyone to head to HUP again.

Meanwhile I haven’t moved my bowels since coming to DCMH. This has been a cause of major concern among the doctor and nurses, and all sorts of inducements have been offered.

Today this issue also comes to a head. I’m going to move my bowels, and if I need an enema or chemical help, so be it. I fight some, but this time I give in. A commode is brought in and the enema inserted. A few minutes later I have one of the most horrible 15 minutes of my life. Everything comes out and it hurts and stinks and is just a mess. I’m empty at the end.

I still think that if I go see Dr. Marcotte in his office, which is the current idea, I may be stuck at home tonight and I’m nowhere near ready for that. For one thing there’s no way I can safely get up the stairs.

At 2 PM the unit head nurse comes in and says that if I see Marcotte soon, they’ll hold the bed. And by the way, there’s a transport ambulance down at the front door and I should hurry if I want to avail myself of it. Gee, that’s awfully convenient I think. They have nothing better to do than wait for me? Turns out that is exactly the case. They were waiting on me. It appears a deal had been struck and Dr. Marcotte, possibly at his insistence was about to see me.

I also hear a story a bit later on that I’m never able to fully confirm. Someone at HUP, maybe Dr. Marcotte has boiled over, and dispatched a HUP ambulance (actually a City of Philadelphia Fire Department ambulance) complete with a pair of HUP security guards who are, in fact, armed, HUP being where it is. They have been told to return with me. No ifs or buts. They are to remove me from DMCH and deliver me to Dr. Marcotte. The all too convenient DCMH transport with me in it leaves just as they arrive. I know there was a Philly FD ambulance at the door as we left.

In the extreme rush to leave I get to take nothing but a few personal items like my phone. The hospital people rush me on a gurney to the front door and we’re off to HUP. I call Hilary as I’m been loaded and she heads down also.

When we get to HUP I’m delivered to Dr. Marcotte’s waiting room at Silver 5. Hilary gets there within a few minutes of me, and we’re promptly taken to an examining room. We’re met there by Dr. Marcotte’s chief resident, Dr. Usma Samadini. I lay face down on an examining table and Dr. Samadini looks at the wound, which is hot but apparently not horrible looking on the surface.

Then she starts probing around the sutures or staples, whatever is there. And the pus the starts pouring out. She’s barely controlling her voice and when I glance back she has a look of horror on her face. Meanwhile Hilary is almost getting sick and has to move out of sight of my back. I’m not feeling any real pain, but I’m getting very concerned.

After 15 minutes or so (it felt like an hour or two) of cutting, probing, and moping up lots of yellow pus, she decides it’s time for Dr. Marcotte to see what has happened. He comes in and his voice goes hard as soon as he sees what’s going on.

He has me immediately admitted. The process is so fast that I keep my DCMH ID bracelet. No one takes the time to get me a new one. Indeed, it’s three days before I actually get a HUP bracelet.

I get hooked up to an IV and antibiotics are immediately started. The doctors have no idea what the exact bacteria is responsible for my infection so they start a wide-ranging drug aimed at the most likely targets. Blood is drawn and sent for cultures, but the results will take a few days at least.

Meanwhile, my back incision is going to have to be opened and the infected tissue debrided or removed. I ask if this can be done under some sort of local anesthesia, but the answer is that a general is required. I hate general anesthesia. For one thing I so dopey for a few days afterward, and for another, I feel the effects for at least 30 days.

I’ll be operated on at noon tomorrow. Noon is normally a lunch hour and rest period, but it’s the only time I can get in, and I have to get in quick.

The evening passes quickly and I fall asleep surprisingly easily.