Foot Rollercoaster: Osteomyelitis, Idiots and Hard Decisions

As some of you know, I have been dealing with what started as a minor foot ulcer last April. I started having problems with an infection last fall and it seems like it has been downhill ever since. When I was on antibiotics, I felt better and my foot felt better. I would finish the antibiotics, get sick again and my foot was really sore. I heard from several doctors that I did not have an infection – they made that decision on how my foot looked, not on any blood tests to check for infection. One doctor did order a bone scan in November and that came back that I had a soft tissue infection. He still insisted I did not have an infection and I was not placed on antibiotics.

I was in the hospital before Christmas and that was a nightmare! After I came home, I went to a walk-in clinic and the nurse practitioner there did blood work and placed me on an antibiotic. She also wanted to follow me until my appointment at the wound center.

I had an appointment scheduled for Friday, December 28th at the wound center. About 3:00 PM the afternoon before, they called me to reschedule that appointment. I ended up having to wait 3 weeks to get in. When I tried to tell her that I was sick, the nurse blew off my having an infection because the culture came back negative when I was in the hospital. When I tried to tell her that they kept putting me back on the same antibiotic and it didn’t seem to be killing whatever it was I had, she told me which antibiotic I was on didn’t matter. Anyone that has ever seen a culture knows that statement is just not true!

Shortly after that phone call, someone from my insurance company called to check up on me. She reviewed my hospital file and wanted to check on how I was doing. She was surprised what they did with my appointment and what the nurse did. She actually told me that I should get a second opinion!

By the time I got to my appointment three weeks later, I was getting pretty sick and the day of my appointment, my foot was starting to get red again. I also learned that my wound was starting to tunnel under the skin – the infection eats its way across your foot underneath the skin.

I saw a different doctor than I had seen before (one very good thing!) and he said he thought I had osteomyelitis. He gave me a script for antibiotics, this time something different than I had been on. I also got a script to go get some labs. He said that the pulses in my feet were weak and questioned why no one else had ordered a Doppler on me yet – up until then, I had always been told that I had very good circulation in my feet.

He also told me that wound cultures are very iffy. He said that our bodies have a lot of bacteria and stuff on them naturally and sometimes the labs end up ruling out too much stuff – therefore, the culture says negative when you really do have an infection. He said that the best culture for a wound is one done in the operating room and taken from deep down in. I wish that nurse that blew me off had been in the room for that conversation.

Even better, he wanted to use MediHoney rope to pack the wound with. I have seen really good results with MediHoney and was really happy to hear that is what he wanted to use. Unfortunately, I am not able to pack it myself so my sister that is a nurse is coming daily to do that for me.

When I went back to the wound center the next week, they had my labs back and my SED rate was 53 – that was higher than what it was when I went to the ER in December (I was 47 then). He said my CRP was in the 30s. I don’t know if the ER here did that test because the ER doctor didn’t mention it and I didn’t get my labs yet. The labs I have from the hospital in Pittsburgh had that at 2.97 and it should have been below 1. I don’t know if I am comparing apples to apples or apples to oranges since they were two different labs, so I am not going to worry about that being so much higher.

He gave me another script to keep the antibiotics going. One of my d-friends told me that her doctor thinks that infections tend to hide in diabetics and we need a longer course of antibiotics than most people. I brought that up to the doctor and he agreed with that statement. It seems to fit what I have been going thru because the antibiotics helped while I was on them but it doesn’t seem to kill it totally and when I stopped the antibiotics, the problems reappeared.

He also ordered another MRI – I had one back in October before doing the bone scan and that came back as inconclusive.

Last Tuesday, I went for both the MRI and the Doppler at facilities 50 miles apart. To make it even more fun, my sister was coming at 10:45 to the dressing on my foot and we were going to leave for the MRI after that. I woke up and there seemed to be too much sun coming thru the blinds and I knew that I was in trouble. I looked at my alarm and it was blinking – the power must have gone out overnight. I turned on my cell phone to see what time it was – 10:03. Oh crap!

I called my sister and she didn’t pick up. I left a message for her to bring her key in case I wasn’t downstairs when she got there. I went downstairs, took the dog out, made a pot of coffee, set my travel mug out along with Boost and Gatorade to have in the car as breakfast and grabbed the jeans out of the dryer that I wanted to wear. I knew I would need to take those off for at least the Doppler and wanted something loose that wouldn’t pull my bandages off.

I went back upstairs, took a quick shower and got dressed. Just as I was finishing drying my hair, I heard the phone ringing. It stopped by the time I got to the phone and I figured it was my sister. I went down and opened the door and just as I did, the phone started ringing again. I closed the door but the phone stopped and when I turned, I saw my sister coming across the parking lot. She left early to run errands and didn’t get my message.

We made it in plenty of time and I had coffee and breakfast in the car!

I had another appointment at the wound center last week after getting those tests done. They had the results of the MRI but the Doppler report wasn’t ready yet (the nurse called to check). I do have osteomyelitis.

The doctor had talked to me about some of the different options before. Although I was certainly aware of what would/could happen, I really did not want to make decisions on anything until I knew for sure what I was dealing with. I find that I deal better with things taking one step at a time and not freaking out about the whole big picture.

His recommendation is to have surgery and remove the infected bone. He wasn’t able to tell me how much of the bone is actually involved. He wants me to meet with one of the doctors there that would do the surgery. I asked him for some time to think about what I want to do. I need to give him my answer when I see him again this week.

He discussed trying antibiotics and I “might get lucky,” but he thinks that my foot will “light up” again.

I don’t want to do surgery. I don’t want to spend even one night in the hospital and he said it would probably be a couple days. I don’t expect anyone that hasn’t walked in my shoes to understand why I feel the way I do but I have had enough. I was talking to a friend that has also gone thru a lot because of her health and has had numerous surgeries. To quote her, she said, “I am done.” I went thru this crap for two years back in 2005 – 2007. I lost a lot then because of doctors that chose to ignore test results. I am in that same boat again because of the morons that chose to ignore the bone scan and failed to order some simple blood tests.

One of my friends reminded me that I am a fighter and another told me to follow my gut. I know that she is right because in the past when I let someone convince me to not follow my gut, I always regret it. My gut tells me that antibiotics are the best treatment for me right now. I can’t say what will happen or how I will feel about it in the future, but for now, that is the road I want to follow.

The past couple days, I have actually felt better than I have the last couple of months. My blood sugar seems like it is back to normal again – I have been fighting highs and needing more insulin than normal. I am taking that as a sign that the antibiotics are starting to kick butt on the infection! My sister thinks the tunnel is about half the size that was when we started using the MediHoney. I am still pretty nauseous and that makes it hard to try and eat.

Anyway, it has been a long road and it looks like I still have a long road ahead of me.