I’m 62 and I’ve been a bi-lateral, below the knee amputee since I was in a car accident in 1971.
But I have tried to not let that be an excuse or something that held me back. I carried my son full term. He’s now a father himself which makes me a very proud granny of a terrific 6 yr old, soccer playing, full of energy little boy.
My quality of life is good. I have my ups and downs but I am active for a double amputee..not a blade runner or dancing with the stars contestant, but a normal 60-year-old lady. I have a full-time office job,I walk with prosthetic limbs, I grocery shop, do housework, walk stairs, tend my small garden of herbs, love to cook, make homemade candies for the whole office at Christmas and decorate a mean Christmas tree.
Last year, that began to change.
After a recent 75 lb weight loss, I was able to be more mobile than I already had been. I was feeling as good as I did twenty years ago. I’ve always been very independent and that independence was partly my downfall; my stubbornness was the rest of it. I enjoy doing things for myself and don’t often ask for help. I painted walls in my house, mended furniture, refinished furniture but I paid a very high price. As my doctor reminded me, I was still 60+ and I tried to do too much, too soon.
I put too much strain on my hip that was already damaged with minor arthritis and really screwed the pooch. It seemed like one day I was spreading gravel and mulch in my flower beds, pulling large planters around the yard and lifting things much too heavy for even a younger, able-bodied person to lift…and the next day, I could barely get out of bed. Of course it wasn’t that quick but it seemed to be. It wasn’t just muscle or joint soreness of arthritis. Each day got tougher to walk, sit comfortably,sleep comfortably, get up from a chair, keep my balance, or bend over to get something from the floor and I saw my range of motion in my left leg lessen and my pain level in my hip elevate dramatically.
I have always had a pretty high threshold for pain tolerance but this pain was horrific.I took the pain as long as I could until the day came that I couldn’t walk the three steps up into my son’s home for my grandson’s 6th birthday without extreme pain. My balance had deteriorated to the point that I was in danger of falling. I had to stay home from work, take pain medication and lay flat of my back for a couple of days before I could even entertain the idea of going back to work. It was a very rude awakening.
I went to my family care doctor. X-rays taken then, compared against the ones taken two years before, told the story. He told me I needed surgery. I flat-out refused and asked for another option.
My doctor knows my stubbornness. He sent me to an occupational and rehab therapist. He told me from the onset that it was probably an extreme longshot but if I was willing to try, he would prescribe it. along with stronger pain medication. I was determined to do anything to keep off the operating table.
I went through 8 weeks of therapy to strengthen the muscles around the damaged joint in hopes it would support the joint and make the pain less. Nothing, as far as exercise could mend the damage but we hoped it would at least stop further damage and make it all stronger so that maybe I could postpone surgery. I was diligent and worked hard but to no avail.
My range of motion did not improve, it worsened. The next x-rays showed continued damage. I had no padding in the joint. It was bone on bone and to the point that no amount of pain medication helped. I was out of options.
I did a lot of soul searching. Could I go on like I was? Was I prepared to limit my daily life. Suddenly, I truly felt handicapped in every sense of the word and I didn’t like it one bit.
I took to the internet. I sought any research on the subject of amputees with hip replacements. Any documentation of double, BK amputees having a hip replacement. With the exception of three documented instances of single amputees with hip replacements done on their non-amputated leg, there was nothing. My family care doc didn’t know of any either. Patients in my particular situation did not exist.
It isn’t the actual surgery that will be different. It is the recovery for me as an amputee. I do normal things differently everyday. I’ve learned to do a lot of things but I do them in a way that my disability allows. A rehab program for me will have to be drastically different form the norm. My biggest fear was to go to a surgeon who had no comprehension of the restrictions an amputee has in everyday life and how that would translate to recovering from hip surgery.
There was also the worry of how I could pay for the operation if I found a surgeon outside my insurance company list. That is a reality everyone faces for any medical procedure.
I wrote a letter to the Chair of Orthopaedic Surgery at The Ohio State University where I work. Before I met face to face with him, I wanted to explain my concerns about the recovery and laid it all out for him. He was kind enough to respond agreeing it would be a difficult recovery but that he would do everything he could to help me get back to the level of freedom I had before. He is well-known and very respected as a leading surgeon for hip replacements. He also freely admitted that he has not performed this on a double amputee.As much as I would have preferred to have someone who had experience working with an amputee, it was clear that a surgeon like that did not exist. I respected his honesty so I decided that As long as he was willing to work with me within the perimeters my disability sets and to believe me when I tell him things that I can and cannot do, I felt he was the one I wanted to do the surgery.
I will say this upfront. I DON’T WANT SURGERY. I would do anything if there was another way. But there isn’t. I refuse to be this limited in doing the things I want to do. I will not let my body determine my future for me. And honestly, I can’t live with this much pain anymore.
I am more afraid of this than anything else I have ever gone through. It’s not the surgery itself. I’ve had LOTS of surgeries. But the recovery is going to be…well, I don’t know exactly what it IS going to be and that’s what has me petrified.
I’m going to document my experiences. The good, the not so good and the bad. Amputees may understand some of it more than those who aren’t disabled but my heartfelt hope is that this documentation may be of help to someone else who might have to go through this.
If you chose to take this journey with me….Buckle up!
Categories: bilateral BK amputees, Hip replacement, life
Hey JK – so glad you are sharing this all of us. May your story light the way for others, so that when they come looking for information…they will find facts, wisdom, and comfort here.
You are one brave, beautiful and feisty woman. One of my “fierce and lovely” compadres.
I shall follow your journey, sending waves of courage and all the healing vibes.
Go easy, darlin’ ~p
Thank you for your willingness to share such a difficult, personal story. Let’s hope that along the way there are only happy surprises.
I am so thankful that I can be a part of this journey with you. Not as an eyewitness or someone who has struggled with what you are going through, but as an observer and a listener. I hurt for you and the struggle you are entering, but I already know that you’re a fighter. You are a strong, determined woman, and I am so proud to know you! Praying for an amazing, miraculous recovery, but more than that, I’m praying for peace for you as you go through this! 🙂
What a great journey to share I’m looking at two possible types of amp btk and partial foot I need a lot of support please help to follow my post and any advice will help immensely