Well, the hits keep on coming! As many of you know I have had a lot of problems with swelling and infections in my left leg due to diabetic complications. In the past few years I’ve had 5 hospitalizations due to infections that have all turned out OK once antibiotics were on board. Starting about two years ago I began to get worse diabetic ulcers due to pressure being unequally applied on different parts of my left foot. This lead to the removal of my little toe. Typically, pressure soars can be managed with wound care and changing footwear. Earlier this year one of those pressure sores began to become a major problem to the point that it involved a large part of the outside of my left foot. Because I have already had a surgery to remove a bone infection which resulted in the loss of my pinky toe, the infection was already close to other bones. We spent multiple weeks going to wound care to try and manage the situation, but the infection was too aggressive and too close to the bone, and I got sick and ended up in the hospital with sepsis. The infection was particularly aggressive going from a small concern to a major issue in less than a few days. When talking with the Doctor who did the surgery on my foot already, two options were presented. The first option is called debridement which is removing all of the affected damaged tissue and possibly introducing more infection. This option would have taken several months to hopefully fix the problem but had a low probability of rebuilding the tissue and being able to walk without causing additional damage. The second option was an amputation of my left foot to prevent the spread of the root cause of the condition. After careful consideration the amputation what’s the best option.
I spent about 10 days in the hospital with a few days getting the fever under control with antibiotics, followed by a day or two of waiting for the surgery to be scheduled and another few days for recovery. During this hospitalization there were multiple instances where I had to educate the nursing staff about how to best care for an ALS patient. At the beginning of each nurse’s shift I would ask about their knowledge of ALS and instruct them on various things that I would need for them to do. Most of that discussion was informing them of what help I needed, especially getting out of bed using the bathroom, as well as positioning all of the things I needed within arm’s reach for easy access. Transferring in and out of the bed was the most difficult aspect that I needed to coach them on and make sure they were doing what I needed at the time. Several times during the hospitalization, I had to forcefully tell nurses or other support staff to stop trying to force me to do what they wanted and listen to what I was saying and how I wanted to do things. This was generally well received but there were a few nurses who took personal offense to me knowing what I needed and the support required of them. Being very direct and not accepting less than what I required in the form of physical support, was a personal growth for me in the area of self advocacy.
The loss of my foot has made using my manual wheelchair mandatory. I am trapped in my office chair nearly all day with only occasional trips to the bathroom. We have found it much easier to use a hand held urinal rather than make the trip from my office to the bathroom in most cases during the day. Our first day home after getting out of the hospital was very rough because I did not have the necessary tools to transition from the wheelchair to the toilet and definitely hadn’t recovered strength in both my upper body and right leg. It took a measure of sheer will to be able to make the transitions even while getting physical help from Stephenie to stand, pivot and sit. Not being able to stand on my own 2 feet was very new and different limitation, but I had a few resources that I called upon to learn some new tricks. A great friend of mine from Navy days (Dan) is permanently in a wheelchair, so I gave him a call to ask how he got around and transitioned from his wheelchair to other furniture, or even into a vehicle. In the hospital I met with the physical therapy and occupational therapy representatives, who I thought would have been the right people to educate me on how to do transfers. They did not provide much useful information and my friend Dan, told me about using a transfer board which I purchased and had delivered the next day from Amazon. This simple device made all the difference in safely moving between sitting surfaces, along with the use of a gate belt, giving Stephenie a handhold to help support me. Since coming home from the hospital ,my strength has gradually improved to the point that I can use leverage to stand on my one good leg. In addition, my upper body strength seems to have improved greatly so that I can do a shoulder push-up allowing the transfer board to be slid underneath me, making it much easier to start the transfer process.
The adjustment to the amputation is going pretty well, and I’m definitely hoping to be able to get a prosthetic in the coming months. Once that happens, I hope to be able to stand again and at least be able to do an old man shuffle, using my walker and under my own power. The loss of my left foot has not been personally traumatic for me because I have already mourned the loss and use of most of my left side including my left hand. A couple days after getting home from the hospital, Jenna asked why I was not more freaked out about losing my foot. She thought that was one of the worst things that could have happened to me. It felt kind of like a teaching moment as I explained to her that I had already mourned the loss of my left foot, and that having it just be shorter while also removing the source of infection and medical complications was probably the best thing that could happen right now. I wanted her to understand that sometimes you take small losses that seem overwhelming at the time, but that you can overcome that and still be productive and successful. Hopefully that was the idea that she got from our discussion.
Moving forward I fully expect to be able to stand and walk again in a few months, using a prosthetic foot. I don’t anticipate that it will slow me down because I’m already walking like an old man with a walker required for balance. It will be nice to be able to move around at will and get off of my big fat butt!! The simple freedom of being able to stand up and walk around, even if it’s only a few steps at a time, is something I’m looking forward to. Once I am mobile again, I’ll be a modern-day pirate with a peg leg!!
