"Gee, It's Great to Be Back Home Again"

I think John Denver said it best in that song.

Anyway, I got back home from the hospital on a Saturday, the day before Halloween. That meant my husband had to shop for candy and run up and down the stairs to get the door for the trick or treaters. I usually handle the shopping tasks and we alternate on answering the door, but this year, it was alllll his.

First things first. As soon as I got home, I wanted to take a bath, but a nap beckoned me after our long and tiring car ride home from the hospital. Sophie and Piet, my black cat, snuggled up to Mommy, and we all settled in for a few hours. Then, I took my pain meds and got into the shower with a lot of help from my DH. In fact, he got in with me, and we scrubbed me down together. It felt very good to get my hair washed after being at the hospital for six days. I usually jump in the shower daily ... every morning ... so that first shower was a gift.

The next few days, indeed the next few weeks, were mixes of sleeping, watching TV, sleeping, trying to see how much I could do around the house without hurting myself, sleeping ... you get the idea. Every time I got out of bed, I had to put my brace on. I did get out with my hubby and Sophie exactly two weeks after I had my surgery. I put my brace on, took my Percocet and off we went for a walk in the state park near our house. The day before my operation, we had walked there, and I had asked Hans to sprinkle my ashes here if, for some reason, I didn't make it through the surgery. There was that chance, there always is. This is where we always walk Sophie, and I thought I'd at least be near them both that way. But here I was, walking on my own, albeit in a brace, alive and well. Well, almost well. At least healing, hopefully fusing.

I'd lost ten pounds while at the hospital, mainly because I just wasn't hungry. I was much more thirsty, so I drank iced tea, ate lemon ice and apple sauce and picked at the rest of what was offered. I remember a particularly large meatball with some spaghetti and sauce that I pushed aside one evening. It's not that the food was bad. I just wasn't that hungry, which is odd for me. Besides, I was still a bit (well, more than a bit) constipated from the surgery and the pain meds didn't help in that department, either. My catheter wasn't appealing dinnerwear, neither were those drains on either side of my butt. I think the Percocet killed my appetite at home and furthered my constipation. I figured I didn't "go" for two weeks. Duxolax and suppositories fixed that eventually, but I'd suggest anyone who's about to have the same kind of surgery not hide their stool softeners like I did in the hospital. Ducolax is your friend, or as someone who was in the same situation as I asked, "Vanna, can I buy a bowel?"

Recovery

(The photo to the left is one taken of my back when I got home. There's stitches and staples down the center and a few "holes" where the surgical drains were. In the photo, they look like zits gone bad. Surprisingly enough, those hurt just as much as the main incision, and they took at least as long to heal. Along with the scars, I still have "dimples" where my drains were.)

First, I hear stirrings around me and groggily think that I must be done with my surgery already. That was quick. Easy for me to say. My surgery, I later found out, took seven and a half hours. Even before I open my eyes, I wait for the post-op pain. I’ve read enough about fusion surgery to know what’s coming next, but I’m actually quite comfortable. Then, just to test the waters, so to speak, I wiggle my torso just a bit, adjust myself in bed Yes, there’s the pain, but not as much as I expected. I keep thinking, “It’s done, it’s over. Yippee!” I consider myself very, very brave, and go back to sleep.

When I open my eyes, I see Hans waiting in a nearby chair, dressed in a cotton hospital gown. I ask him what time it is, and I realize he’s been there for a very long time. I’d told him to go on home or back to his office that day, and Dr Heary would call him when everything was done. Hans insisted on staying, so I know he had to be tired. Add to that the hospital gown, and I know it was time to send him home. I was okay, it was late, there was nothing more he could do, and I wasn’t in any condition to keep him company. In fact, I wanted to just close my eyes again. Before I did, I looked for that morphine pump they had promised me and gripped my fingers around the button. That, I was not going to lose track of.

Hans went home, and a few hours later I was moved to my room. As luck would have it, it was actually a private room located at the end of the hall, with only room for one hospital bed and its accoutrements. That’s where I spent the next six days, alternately snoozing, pushing my morphine pump, watching TV and seeing various hospital personnel come and go.

The nurses were actually quite nice. Even the one who woke me up in what seemed like the middle of the night and kept asking me if I wanted an enema (the answer was always “No”) was okay. On the second day, I got my back brace and could leave my bed for a while as long as I had it on. That also wasn’t as bad as I thought it might be or as restrictive or hard to get on and off. In fact, it helped hold me in and give me some “bracing.” I just had to drag along my IV, etc, though … very cumbersome.

The fourth day, I was asked to speak to a small group of surgical students about pain. My guess is that they were all so young and inexperienced with physical pain, but were about to enter a field where they would be constantly fixing people (like me) who were in pain. They needed to know about that one topic they would be concerning themselves with for the rest of their careers. Today I, full of pain and pain meds, would help.

There were six of them, in addition to their doctor in charge. They gathered around with chairs and asked questions. Some took notes. I held court from my hospital bed. I guess it went well because the next day, a psychiatry doctor and his medical students came in to talk to me, too. After thinking about this for a while, since I had plenty of time to think, I figured I was either very interesting to talk to or some weirdo the psyche students should be meeting. Anyway, when I was asked to speak with the second group of students I said, “Sure, bring the kids in.” It helped to pass the afternoon and was better than watching “Oprah.”

Towards the end of that week, my drains were running clear, my incision was looking good, my vital signs were normal, and I was able to walk up and down the hall, plus manage the stairs. These were the prerequisites to going my home, and I very much wanted to do that. The morphine was nice, but I missed my little family and my house.

So, on Saturday, October 30th, I left to go home. I had my prescriptions, my brace, my instructions, and my ride was waiting. I didn’t feel as bad, pain-wise, as I thought I would on the ride home, but that could have been because I was so happy I was going and not coming. Sophie was delighted to see me when I got home, and I, her. She came right into the car after me. I guess I was too slow getting out that time, brace and all, but she seemed not to mind. It truly was over; I was back home again in relatively one piece, plus a few extra pieces, as it were. Now, all I have to do is recover, and that will take a while.

October 25, 2004 - Surgery Day Arrives

I spend a few hours at friends' house with my dog and my husband the night before my operation. It takes my mind off the next day, but only fleetingly. I go home, get ready for my hospital stay and go to bed early. I have to be at the hospital at 5:45 AM for my 7:30 AM surgery. The hospital is about 45-60 minutes from my house. That means I have to get up at the crack of dawn, eat no breakfast, shower and dress, then be driven to the hospital while trying to calm my nerves.

I can’t believe I’m actually going through with this.

It’s still dark outside when we arrive, and Hans drops me off just outside the main entrance as he goes off to park the car. I wait with my small duffle bag while a city rat scoots by in the shadows. I hope there’s none of his kind inside. I’m scared enough without having to worry about rodents. Besides the rat and me, there’s nobody around at this hour. Hans finally comes, and we go inside.

The ride in the elevator is quick, and I’m at admitting before I know it. All the paperwork and procedures to get me signed in and into my temp room go smoothly. I’ll be taken from here to the operating room. Hans will wait until he can join me in the ICU, which is where I’ll be after surgery. The nurse does some preliminary blood pressure readings, gives me a pair of lovely stretch stockings to be worn under pressurized leg units to prevent clots from forming during and after surgery, gives me my standard hospital gown and leaves me to wait. It occurs to me that there’s still time to run away, to just go home, but then I know I’ll only have to go through this morning again at some point in my life soon. If I go home now, my back will still be a mess. I’ll still need surgery, and I’ll also be labeled as a sissy, one of the non-brave who ran away. While I’m having this debate in my head, a nurse comes to get me, and I’m almost relieved at no longer having a choice. Hans walks alongside my gurney and the ride to the OR is fast.

My anesthesiologist meets me at the door and immediately begins a patter conversation about my self-donated pint of blood, to keep my mind off the tasks at hand, no doubt. Little does he know I don’t want to talk about donating a pint of blood ever again. A very kind OR nurse starts talking to me, asking me if I’m cold (I am) and getting a blanket for me, which helps. I hear her say something about giving me something soon to help with the pre-surgery jitters, but if the truth be told, the next thing I remember is waking up in Recovery.

October, 2004

October was a rough month. Not only did I wake up in a cold sweat every morning at about 4 AM, wondering if I was doing the right thing and just scared out of my mind about the surgery, I was imagining how homesick I would be at the hospital. In fact, I was getting a bit hysterical about it and I was getting on Hans’ nerves. I knew myself well enough to know I’m a Big Time homebody. I’d miss the comfortable surroundings of my house, my husband, my cats and most of all, Sophie, my red and white corgi. That's them in the photo to the right, above.

Also during October, I had to get myself down to University Hospital (a forty-five minute trip on a good day with light traffic day - and remember this is North Jersey - to see Peg, my surgeon’s nurse-practitioner, again for some last minute briefings, prescriptions and just general information I needed to have pre-surgery. Another trip was for my PATs, and yet another for my chest X-rays, which they didn’t do at the same time. Because my heart was skipping beats like a little bunny on PAT day, I had to see my cardiologist to get his okay for the surgery. The anesthesiologist wasn’t happy with my EKG at the PAT. That meant a trip to Fair Lawn, NJ, from my home in Wanaque. I was doing a lot of traveling for this back of mine.

The pre-surgery day event that caused me the most grief was the blood bank. I was to auto-donate two pints for the day of surgery. Once, a long time ago, I cheerfully tried to donate a pint of blood at a blood drive for the courthouse where I worked. I thought I was doing a Good Thing ©. It took forty-five minutes to draw not even a pint of blood. The nurse who took care of me told me not to come back. Small veins and low blood pressure. Several years later, I ignored that advice and auto-donated blood again. This time it went smoother, but it was tough getting the full pint out of me. Again, I was told I was not a good candidate for this kind of thing. So, when it came up again before my back surgery, you would think I’d say something to someone about this, but nooooo. I just mumbled to Peg that I might have a hard time and left it at that. To Peg’s credit, she did give me a prescription for Procrit (usually a cancer drug used to increase red blood cells) and told me to pick up some iron supplements. Boy, were those rough on the bowels.

Off to the blood bank I went, thinking I’d at least get a post-donation Twinkie out of it. My husband wanted to go with me. I protested, but he won. As it turned out, I’m glad he was there.

I went in, lay down, rolled up my sleeve, and got set up with the needles and such. So far, no problem. There was apparently a blood drive going on that day, so there was plenty of people coming and going around me. As I lay there, the nurse kept coming up to my arm to see how I was doing, donation-wise. When she saw my “blood bag” (is that what they’re called?) wasn’t filling, I told her it wasn’t her, it was me, and I’d had that problem before. Still, she looked troubled. Time went by and the folks who came in with me finished and left. A new bunch came in while I just lay there patiently.

Finally, it looked like I had given just about all the blood I was going to give, and they prepared to unhook me. The nurse wanted to draw a bit more blood for the required testing. I hadn’t given a full pint after almost an hour, and they wanted more? Problem is, I wasn’t giving up any more. I sat up after a bit, felt very weird, asked to go to the rest room, and the nurse followed me there, probably knowing what was about to happen next. Well, I got dizzy, nauseated, and very light-headed all at once. Three attendants quickly grabbed me before I hit the floor, put me on a gurney and let me come to. I started to feel better, but while I was lying there, everybody in the place came by to see if I was okay, if I was feeling better and to ask what happened, including the people who were there to give blood for the drive. How embarrassing. At least I’ll never bleed to death.

Then, I got a granola bar. I think Hans ate all the Twinkies while he waited for me.

Like I said, I’m glad Hans decided to come along with me that day. I took a long nap when I got back home again. Now, all I had to do is get through the surgery. As Tom Petty sings “the waiting is the hardest part.”

How It Started

November 2002

I was just walking around, minding my own business, shopping with my husband at Syms one evening, when all of a sudden, I couldn’t move my legs. My back hurt terribly. I found myself shuffling just to get back on the main level and near the entrance. I asked my husband to check out his merchandise without me, two nice new suits for his new post-retirement state job, and I’d meet him at our car. I figured if I could continue to shuffle out the door and into the parking lot, I’d be okay. I looked and felt like an old lady. It was dark out, so I hoped nobody saw what a hard time I was having just walking to my car. When I got to there, I reached into my purse, got a Lortab, broke it in half and swallowed it down with my ever-present bottle of Poland Spring water.

*****

I’d always had some sort of lower back pain, ever since I was a teenager, but tonight this was much more acute. Something was wrong and I knew it. Lucky for me I had a few Lortab left from my shoulder surgery the year before. Tonight I needed it. Just sitting in the car actually helped a great deal, too, and I wondered why that was. I’d find out later that this was very typical of lumbar stenosis.

I went home, got ready for bed and the pain eased up. Just being off my feet helped, and so did the half Lortab I swallowed in the car an hour ago. I was okay by the next morning and life went on.

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February, 2003

My back continued to bother me, but one day, all of a sudden, I couldn’t walk or stand for more than a few minutes without getting wrenching, cramping pain in my back, my butt and my outer thighs. One morning it was particularly bad, and I called my ortho doctor. I wanted to come in right away. This was bizarre, and I was admittedly a bit scared. He examined me, watched me try to walk across his examining room, ordered an MRI, did X rays at his office, which confirmed Spondylolisthesis and never-before diagnosed left lumbar scoliosis. He then gave me a shot of something in my lower back to ease the pain. It helped a little only.

My MRI was very interesting indeed and a source of much Internet research over the next few weeks once I got a copy of the report. It seems I had moderate stenosis at L4-L5, a congenital transitional vertebrae (an “extra” vertebrae, as it were … oh, goody, an extra back bone), degenerative disc disease at the L5-S1 level, and what looked to be a synovial cyst of about 1.5 centimeters at L4-L5 projecting into the spinal canal and moderately compressing the right side of the dural sac. My ortho doctor suggested epidural injections to help with the back pain and butt cramping. He also said I may need surgery eventually, at least to get that synovial cyst out of there.

My husband’s chiropractor reviewed my MRI and X rays and conceded that I did, indeed, need surgery. He could do nothing for me and said so. An honest chiropractor who concedes that everything from chicken pox to a broken neck can’t be fixed with chiropractic. How do you like that?

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March, 2003

My regular ortho man sent me for a series of epidural injections. He told me that if the first one worked, we’d do the whole series, but if it didn’t, we shouldn’t bother with the other two. I saw a wonderful anesthesiologist at the local teaching hospital’s Pain Management Center. My ortho doctor insisted that he be the one to do my injections, and he really did make it painless. I’d read so much online about the problems and pain these injections cause, but I can truly say that all three injections (two epidurals, one facet joint) went very well … and they did help, but only for a little while.

My ortho doctor was nearing retirement age, but still came into the office every day and did some surgery at the local hospital. He’d done my right shoulder surgery a year before and was treating me still for a recurrent left knee problem and later, a left shoulder problem. He told me outright hat he would not do my surgery if we decided to go that route. He referred me to a young ortho doctor at his practice who specialized in backs. One visit and I was not impressed by the guy, so I started my quest for a surgeon.

One of my first stops was my pediatrist, a doctor who I think is brilliant in his chosen field and dedicated to good medicine. I am always impressed by his breathe of knowledge on the human body. Years before, he had asked me to have an MRI of my lumbar spine because he thought there was something funny going on there, based soley on my foot problems. I didn’t go for that MRI then, but I should have. He was right on about the issues in my lumbar spine.

Anyway, I showed him my test results and he said “See? I told you so.” Then, he said “Don’t screw around with this. Have it taken care of.” I told him about my situation with my regular ortho doctor, and he told me that if he or any member of his family needed back surgery, he’d go right to the neurological team at University Hospital in Newark, New Jersey. He gave me the name of the chief surgeon down there, but I discovered when I called that he handled brain tumors in adults and children. When I explained my problem, I was directed to Dr Robert Heary, and I arranged for an appointment. I admit that I was excited that I would be seeing an expert and maybe someone who could really help me with my back. Finally, after years of suffering, but reading that 90% of the population suffers from back pain at least once in their lives, I never wanted to complain too much. Now, I really did need help.

I gathered all of my Xrays and my MRI slides and report, and got ready to see Dr Heary. My first appointment was on December 30th. Happy New Year.

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December 30, 2003

Dr Heary was an easy to talk to, down to earth-type guy who looked at the reports, X rays and MRI of my back and admitted that my back “was a mess,” as my husband said to him. We talked for a long while, and my husband, who accompanied me to the office, liked him immediately. This was a good sign, since my husband doesn’t like or trust many people. That he would think so positively of someone we just met who may be operating on my back was encouraging.

Dr Heary wanted me to get flexion X-rays so he could see the extent of the slippage of my lower lumbar vertebrae, so I had that done within the next few days. He told me he’d call me so we could discuss the outcome or have me come into the office. When he called, he asked me to come into the office. Not a good sign.

We had talked about the possibility of doing “small surgery,” ie a lamenectomy for the stenosis, as Dr Heary explained that what happened to me in March of the following year (the strong cramping of my back and leg, not being able to walk or stand for more than a few minutes) could likey happen to me again, and I’d have another “hot back,” as he put it. The worst case scenario was a “big surgery”, a lamenectomy along with a three level fusion, three vertebrae and two disc spaces. It turns out that this is what I was going to need. I guess that’s why he wanted me back down at his office, so he could break the news in person.

The flexion Xrays showed my lower back to be too unstable for just the “small surgey.” We agreed that when my quality of life got to be so bad that I’d need the surgery to live well, I’d get it done. Dr Heary said it was not an easy surgery to get through and the recovery was long. He went on to explain what it was all about and what the post-surgery would be like, including a brace for at least three months until I started to fuse. He wouldn’t take bone from my hip, but instead would use bone tissue from my spine as he did the lamenectomy. Good. I’d heard that the hip incision was sometimes worse, pain-wise and with general healing time, than the fusion itself.

Dr. Heary asked me if I’d seen a big, tall man leaving the waiting room area before I came in to see him. I had noticed him because he had on a back brace like I’d seen when I was doing research online. Heary explained that he had done failed back surgery and re-fused him just three weeks earlier. Whoever this guy was, he looked to be in good shape to me, especially three weeks after going through what I was about to go through at some point soon. It made me feel better, I admit. I admit that I was already beginning to think about surgery for myself in the fall.

I saw Dr Heary several more times, just for follow-up and management, until I called for an appointment a month before my next scheduled one in September of 2004. My back pain had gotten so bad, I was ready to say yes to surgery. It wasn’t another stenotic episode, just a bone-on-bone pain almost constantly. I guess that’s the feeling of vertebrae slipping in earnest, one on the other. I just couldn't get comfortable. I'd stand and I hurt. I'd walk and I'd hurt. Same thing when I sat down. The only relief I got was when I was lying on my side, curled up in a ball.

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August, 2004

Dr Heary’s nurse/practitioner, Peg, examined me and asked questions, as usual, before the Doctor came in to talk with me. She asked “it’s time?’ I knew what she meant, and I replied that, yes, I wanted the surgery. I couldn’t live like this anymore. My back was becoming a quality of life issue, Big Time.

Then, Dr Heary talked with me, asked if I had any questions, as we had covered many points about this surgery in past visits. We set the surgery date for October 25, a Monday. He asked if we could maybe do it sooner, but I had commitments through September and he was getting married on October 1st. So, October 25th it was to be. Now, I had a date to circle on my calendar, a date when the pain would begin to end for good.

I asked Heary if there was something I could do in the meantime, maybe another epidural for the pain or physical therapy to strengthen my back before my surgery, so he wrote me a requisition for PT and would have conceded to another epidural, although he said he usually reserved those for elderly patients who are not good surgical risks. I also got a prescription for Darvocet 100, which, it turned out, only subdued my pain, but did help me sleep. 'Gave me a headache the morning after, though.

I talked more with Peg, who will set me up to donate two pints of my own blood for my surgery during the month of October and will send out a prescription for an iron supplement.

I started my PT the following week. Light exercises for my stomach and back, plus sessions on the TENS unit. Until an electrode burned my back in one spot, those sessions felt good.

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September 19, 2004

As I prepared for my surgery, I booked a cruise, something quick and easy out of Bayonne, NJ, on a ship I was not familiar with but wanted to see. I figured it would take my mind off my upcoming surgery and it would also be the last chance in a long time to do a cruise, since I'd be in a brace for three months and healing for who knows how long?

So, off I went on the Voyager of the Seas!

P.S. - That photo (above) of Hans and me is from one of our trips on the QE2, NOT from the Voyager of the Seas. It's one of my favorite photos of us.