Hello, let me introduce myself. I am Chris Deater Christensen, daughter of Harvey Deater. On December 23, 2018 I had a below knee amputation of my right leg. Anyone with HSAN1 could be faced with the same decision. Here is the backstory of how I arrived at this decision.
I came home from vacation in January 2018 with a heel ulcer. I have no idea how it started as I check my feet every night due to my HSAN1 neuropathy. Somehow during the course of one day something caused a hole in my foot. I saw a podiatrist the week after I got home; he had me non-weight bearing for a while and then put me in an off-loading boot. By the end of March, the hole was the size of a pin, so I went back to normal shoes. In June the hole (ulcer) started to get larger so back to the podiatrist. He put me back into the boot. At this time, I had no xrays or MRI to look for infection and consequently no antibiotics. I was seeing this doctor every three weeks for debridement. By mid-July my foot and leg were very swollen. The podiatrist told me to elevate it. At the end of July, I was feeling sick and sleeping all the time. When I had to drive a short distance on August 1st, I couldn’t stay awake. The next few days I got extremely sick: nausea, neck pain, fever, and headache. I was working and didn’t get to a doctor until I became so sick I wasn’t sure I could drive. My husband, Pete, took me to Urgent Care where they diagnosed me with a kidney infection and possible stones. They prescribed me a broad-spectrum antibiotic. I took that for two days and did not feel any better. At this point I couldn’t get out of bed. After the two days with no improvement I went to our local ER. They drew blood and results were within normal limits. I was given fluid for dehydration and sent home; I couldn’t keep food or water down. The next morning I started shaking uncontrollably. That really scared me, so Pete drove me to the hospital. By the time we got to the hospital the shaking had stopped so I had him turn around and drive us home. The next evening I felt the shaking start again and made him take me back to the hospital. Something was not right. Even though my shaking stopped, we went into the ER. I waited two hours in the waiting room and prayed that someone would call us next. I was feeling so bad. When we were finally called back Pete answered all their questions. Blood was drawn and things started happening. My white blood cell count was very high, and I was diagnosed with septic shock. I was in ICU for seven days, then transferred to a regular floor for 3 days. They found that I had an infection in my calcaneus, the bone in my heel.
While I was in ICU my podiatrist told me, “we need to amputate your leg on Tuesday”. WHAT??? From the man who never even put me on antibiotics? OH NO!! I couldn’t wrap my head around that. The orthopedic surgeon said he thought we should try IV antibiotics before doing something drastic. And so we did.
After almost two months on a very strong IV antibiotic I felt good. I got to wear a regular shoe for a day. Then my foot and leg started to swell again so back into the boot. I did OK in the boot until early December when the swelling made my leg ache too much to go shopping and I was getting sick again. The nausea was almost constant. On Dec. 21st I had Pete take me to our local freestanding ER. They sent me to the hospital to be admitted. The ambulance ride was cool.
On Dec. 22nd the same surgeon who I had seen before stopped by and asked what I wanted to do. Antibiotics or amputation? Pete and I had discussed the decision at length and decided getting rid of the infected bone was the right solution. I assumed I would be sent home and return later for the surgery. I asked what his schedule was like and he said he could do it at 10:30 the next morning. We were speechless for a minute, then said sure, let’s do it! I woke up in recovery and felt great. That night was the only time I had any pain. By Jan 15th I was totally healed. Now I am walking with a prosthetic leg.
I have no regrets regarding not having the amputation in August. Pete and I needed the time to process everything and talk about how things would be different in the future. It is a very permanent solution and we had to be very sure we were ready. It has been a pretty smooth transition so far and we look forward to the next chapter.