The great thing about a surgeon who is the Chair of Orthopedic Surgery in a teaching hospital and college the size of the university where I work is he is highly respected in his field, has performed a bazillion hip replacements, is constantly sought by conferences and other hospitals to show his stuff in front of his peers and because of his students he is up on all the latest techniques and research.  He is a star at taking out old, worn out, beyond repair and diseased body parts and replacing them with shiny new versions that will last as long as a Twinkie in a bomb shelter.  The bad news is, getting an appointment is a monumental challenge. Unfortunately, if I wanted the best I could get, I had to wait for the best.

After my primary care physician referral, his office called me in late May. I knew he’d be busy and I was actually prepared for a wait of at least a month before seeing him. I felt that was reasonable.   The gate-keeper of the Wizard’s calendar was thinking a bit longer. I was given the earliest possible appointment slot: August 6. Three months down the road.

During the long waiting period I made it my mission to read anything I could get my hands on about the surgery and expected recovery time. Of course, absolutely nothing pertained to my situation. Amputees don’t seem to get hip replacements or if they do, no one had bothered to document it. I don’t understand it because bilateral below-the-knee amputees often wear their hips out. It’s just one of the many side effect of having no lower leg muscles to help with the work of the body. The hips do everything for our lower half. That and back injuries, for much the same reason. If I can’t squat and lift with my legs the only alternative is to bend at the waist and lift. Not a good thing. I suppose it also has something to do with the fact that some double BKs don’t stay as active as their non-disabled counterparts, or don’t work a 40 hour week, or some don’t ever get fitted with prosthetic legs. Money restrictions, not having resources to a good fitting “leg” and all the adjustments needed makes using a wheelchair a more viable option for some. For instance, the life span of a man-made leg is around 5-7 years due to natural wear and tear and any changes in the amputee’s body. Even a weight gain or loss of 5 lbs. can drastically change how the leg fits. At anywhere from $5-7K for one basic, walk on flat ground, and stay mostly home-bound leg to $70K and above for the really, really spiffy, run, jump, cosmetically made to look-like-the-real-thing computerized prosthetic leg. That’s for one leg, not a pair so when you do the math, you can see it’s a big chunk of change and even a high-end, tricked out, electric wheelchair at $12K and up is cheaper for the long haul.

In reading about the actual surgery process, everything that I did find just pushed me closer to the edge of total panic. I mean, I’m already missing a lot of body parts both inside and out so I don’t particularly want anyone to cut me apart and take more. Even for a cool titanium joint. Then there were the cautionary lists. Many of the things on the “to do or not supposed to do directly after surgery” lists were some of the same things that in one form or another I either couldn’t do in the first place or had to do as an amputee who wears two prosthetic legs. Little things like bending to reach down and pick up something from the floor suddenly becomes public enemy #1. It was discouraging and frustrating.

I began to wonder if this surgery was really a good thing. Thoughts of how I could continue to limit my life and keep trucking through the ever-increasing pain began to appear in the back of my mind.  Maybe I shouldn’t even try the surgery.  Maybe that’s why there’s no info on amputees going through this kind of thing. Maybe I could just maintain the status quo. Physically I had already cut back on doing everyday things…maybe I could try to cut back financially and limit internet, cable and cell phone use, do with minimum groceries, no extras, and work part time instead of full time so I could stay home more thereby using my body less and my wheelchair more. As long as I could pay the mortgage and utilities, maybe that would work.  Maybe I could do that?

Then I thought about my grandson Bennett. A terrific kid. So joyful, so full of the devil…just like his father was at that age! Bennett was so sad when I couldn’t come to his big 6^th Birthday BBQ party at his house this year and I knew it wasn’t going to be the only thing I’d have to miss. I couldn’t go there for Christmas or Thanksgiving or any other family time because there are steps to climb.  I thought of how just going for a stupid haircut every couple of months was so physically difficult for me. How I couldn’t go to see my grandson play soccer because I couldn’t do the benches or stand like everyone else.  How I’d have to forget about growing the herbs and flowers I love so much because I couldn’t plant or take care of them and the weeds would take them over again like they have this year. How I’d never get to finish the half done old oak buffet I’m redoing. How I’d have to stay nearly house-bound because going to work ate up all my energy and caused me to spend most of my weekends just recovering in bed. How I’d have to have people do more and more for me because I would be able to do less and less for myself.  How I was condemning myself to taking stronger pain medications every day and how they were beginning to fail me.  No.  I could not continue like that.  It wasn’t me.  If there was even a tiny snow ball’s chance in hell I could be myself again, I knew I had to take that chance and do the damn surgery no matter how difficult or painful or frustrating it would be.

I’m not saying that my choice should be everyone’s choice because the price of limiting your life might be one you’re willing to pay… but for me…it was thinking of Bennett that did it. I wasn’t….I am not willing to give him up as the price of not doing the surgery.  I don’t ever want to be the grandma in the corner who just sits there. If that day comes, and let’s face it, we don’t know exactly what life will throw at us, but being that way won’t be by my own choice. If it happens, well then it happens and I’ll cope but I will not choose it. I just can’t let that be the way Bennett and the rest of my family knows me or how my own son remembers me. It’s not acceptable to me.

That’s when I got the idea to write the surgeon. I laid everything out for him in a long letter. I asked him point blank if he felt comfortable working with an amputee and as I said in the first post, he was straight forward and admitted he didn’t know all the ins and outs but he would work with me and try to make adaptations of the normal recovery process into something I could have the reasonable expectation of accomplishing.

As anyone with a major disability will tell you, we learn to adapt our everyday life to what we can do, not to what we can’t do. This whole process is going to have to be that way too. That is a very important part of all this. And I was more than just a little encouraged when he took the time to answer my letter himself. It gave me confidence in him.

Still, the day of the appointment came and I was so nervous I can’t even begin to tell you how much!  I had written a list of questions to take to the appointment.  I think that’s very important for anyone facing surgery.  I knew I couldn’t trust my brain to remember it all- especially in the tenseness of meeting with him the first time.  After all, I was going to turn my future over to the hands of this guy and I wanted to make sure I asked everything possible up front. I didn’t sleep the night before which was probably better than having nightmares about it.

First I handed the nurse my completed questionnaire that was mailed to me prior to the visit and then we went to the little exam room and she asked me almost the same questions again. I always take an additional typed sheet of all my surgeries, hospitalizations, medicines and illnesses. Not because it’s expedient to whoever is recording the info in my chart, but because I’ve gotten to the point in life that I forget when half of them happened unless I have them written down. And intake nurses LOVE it.  After the questions, the blood pressure taking, and the weight taking, she left saying, he’ll be right with you. In a medical speak, that means 15 to a month wait before another human will make an appearance and it usually is on the longer side and isn’t the person you’re hoping for.

My next wave of visitors were the two young interns on the doctor’s service asking most of the same questions as before and me giving most of the same answers. Then, “The Man” came in. After the handshakes and introductions, he pulled up a rolling stool and sat within an arm’s reach of me. I liked that.  He didn’t sit across the room like a deity judging me from afar. He didn’t flip through my chart as I talked to him. He listened. It’s those little things that I judge a doctor by. He sat down, told me he remembered my letter and asked how I was doing. He gave me the feeling he wanted to talk to me. That what I said mattered.  Like the wonderful line in “Avatar”….”I see you.”

I was still nervous, still scared but for the first time, I felt hopeful. He told me that hip replacement surgeries were the most successful and safe surgeries in the US, way above any other surgery performed. Then the questions started. He asked me how I put the legs on, how far the liners came up on my thigh when everything was in place. He asked if they were vacuum suspension or by pin…two of the most used ways to keep the prosthetic leg on. He asked if I had any nerve damage, if I could feel hot or cold on the stumps. He asked about phantom pains. My letter told him that my femur had been broken in the car accident and he wanted to know about that. He asked if I could do this…. if I could do that. All legitimate and extremely telling questions. Then he asked the best question he could possibly ask me. He asked me to tell him my biggest concerns and fears.

I told him. No, that’s not exactly right…I unloaded on the poor man and for some inexplicable reason, I cried. I had held it together for so long and I just let it rip! He held out a tissue and said, “Now I want you to hear my concerns and some more specifics about the surgery and then we’ll go from there.”

Turns out, his concerns mirrored mine for the most part. His three biggest were, 1. My higher than normal chance of blood clots because of my amputations. I can’t wear the leg compressors because I don’t have enough leg to wear them so he said he’d have to come up with something else to help with circulation for me. 2. I won’t be able to stand and walk as quickly as a normal patient. Normally if a surgery is in the morning, the patient is up by the evening the same day. I will be way too swollen to put the legs on to walk or even stand at first and it will probably add a couple days to the hospital part of the stay for me. 3. The unknown total recovery progression for an amputee. He strongly recommended inpatient rehab therapy and thought I would be an excellent candidate for it. Working with someone like me is as new to him as having this particular surgery is to me. He admitted he was only the surgeon and there were other professionals who would know more on the rehab side than he did. He had no problem admitting that. It impressed me.

My three biggest concerns were, 1. The swelling factor he was aware of and talked about. I knew it would be a huge hurdle for me. 2. Will I be able to bend enough to put the legs on the way they have to be put on? The gel liners have to be rolled up like… Literally like a condom. They cannot be pulled on. Then I insert the liner covered stump into a socket made to fit my stump and roll another gel sleeve up and over everything. I have long arms but I will still have to somehow bend enough to do all that. That’s where inpatient rehab will help and I was so glad he thought so too. And 3. Will my history of infections for which I’ve been hospitalized before throw a big wrench in my recovery? Huge unknown and a bridge that hopefully I won’t have to cross but it was important he was aware of it.

We talked a very long time and then he said something I wasn’t prepared for.  I think he said it because he saw how very nervous I was and how upsetting this whole thing was for me. He told me I had another option other than surgery. And that was to do nothing and he added that some people opted for the nothing route. I had to decide what quality of life I wanted for myself. This surgery was not a life or death surgery in the true sense of the words. It was totally elective. He wanted me to be sure I really wanted to go through with it so that I would be in the frame of mind to give myself the best chance to do well.

I took a couple deep breaths and looked him squarely in the eyes and I think my answer surprised him.  “You’re wrong, doctor.  This IS a matter of life or death for me. To continue like I have for the past year and a half, is not a life and quite frankly, I don’t want to live like this.”

“Then, let’s do this,” he said. “Just know that if you decide you want to wait for a while before doing it, you can pull out anytime up to the day of the surgery and I won’t think any less of you. Your hip will never deteriorate to the point I can’t fix it no matter how long you wait, if that’s what you want to do. It’s totally up to you when or even if it happens.”

My surgery date is set for October 5.

It is the right decision…but that doesn’t mean I don’t have doubts and that I’m still not petrified at all the things that can go wrong for me.  I’d be a fool not to be.

But I’d also be a bigger fool to not go through with it.

Categories: bilateral BK amputees, Hip replacement, life