I did wake up with both legs and luckily, I was still under a lot of pain medication. Unfortunately, later that day, I needed to get a dressing change. Suffice it to say, I will go through 100 open-heart surgeries before having another fasciotomy! The pain was indescribable! My team would not allow me to receive any morphin, as my sats dropped dangerously low. The only drug they could safely give me was fentanyl which did nothing to touch the pain. During the surgery, the doctor had placed several pieces of packing guaze within the slices to draw out any residual blood and to help control the bleeding. I hope to never go through anything like that again! Luckily, I had the best vascular surgery Nurse Practioner on my case. Marsha became and still continues to be a very close friend of ours. Mondays, Wednesdays, and Fridays became torture days for me. These were the days that I needed wound debridement, cleaning, and repackaging. My skin was hypersensitive to any type of touch. Again, I was only allowed fentanyl, that never worked. I could not even look at my leg or watch any of the procedures. This had become my Achilles Heel. The vascular surgeon fellow I was left with was NOT my favorite physician. I did not like her at all. She was very brusque, demanding, demeaning (to me and the nursing staff!), and overall just not a very nice person. They wanted me to get up and moving on my leg the day after the fasciotomy, but the pain was unbearable. Mind you, I had only been on extra strength Tylenol for my open heart surgery! My pain tolerance was pretty high, but this pain was beyond me. I know a lot of it was psychological (this never should have gotten this bad), but it’s very difficult to block out all the noise in your head.

I worked pretty extensively with occupational and physical therapy to try and get me past this barrier. Eventually, my team consulted with pain management and I had a nerve block placed in my thigh. This made all the difference for me. I was able to start walking, albeit small steps at first. But I began to set goals for myself every. single. day. I posted those goals on my facebook page (for accountability purposes), and generally surpassed them. I still continued having difficulties with dressing changes because of the hypersensitivity. Alexa, my physical therapist, gave me some exercises to do to try to break past this sensitivity issue. Soon, I began to notice a difference. I just had to trick my mind into believing all the touch was gentle touch and not excruciating pain touches. Marsha even commented on it one day during our dressing change. I had some more setbacks (infections) while on the floor, but I continued to walk and improve. I also learned some exercises to help with the severe drop foot I had developed because of the prolonged nerve compression during the week I was steadily bleeding into my calf.

I was finally and officially discharged in mid May 2021. I still had no idea what truly happened to me. I kept having flashbacks, but again, I have no way of knowing what was real and what was psychosis (and still don’t!). I continued to have issues during 2021, including a prolonged stay once more at CC when I had skin graft surgery to help close the gaping wound left by the fasciotomy. The donor site would not stop actively bleeding (contrary to what vascular surgery kept saying). Working closely with my vascular medicine doctor we were able to determine two things. One, the compartment syndrom was most likely caused by the interaction Prograf (main immunosuppresant) has on Eliquis (it can prolong bleeding time in some individuals), and two, despite everything I was being told about the Lovenox dosing schedule, it was too much for me. My VM doc and I worked for months to get the proper dosage for me. And now, I have to fight anytime I am in my local hospital and need a lovenox injection. They argue it isn’t therapeutic, and I argue if I am given the supposedely correct dose for me, it will cause excessive bleeding. Been there, done that and I don’t need to go there again.

I almost made it a whole year before being hospitalized once more. I had just returned from my quarterly biopsy at Cleveland, and ended up in the local ER later that night in severe pain. I had assumed I had a septic elbow. Tons of testing and 5 days later, it was discovered I had a severe gout flare. Gout is a form of arthritis caused by a build up of too much uric acid in your body. Unfortunately, it is a well known side effect of some of the drugs I will be on for life. My rheumatologist and I are working together to figure out the best way to treat this long-term. It is still a work in progress, but I am hoping we have a solution figured out. Only time will tell.

To be continued….