Going Against Conventional Medical Treatment

On March 7th, I saw a new doctor at a different wound center for my wound. I was switched to another antibiotic – Cubicin. The previous doctor put me on Rocephin after I had an allergic reaction to Vancomycin. The bug I have, Enterococcus, is resistant to Rocephin and my wound went downhill very rapidly. The doctor at Ohio Valley General Hospital Wound Care Center did not consult with an infectious disease doctor. I learned a very important wound care lesson – if you have an infection, make sure you have an infectious disease doctor involved. I now have an infectious disease doctor and am on the right antibiotic.

The bad news was that the wound is now down to the bone and I was told that without surgery, it would not heal. I am again faced with having surgery that I do not want to have. Regardless of whether I choose to have surgery or pass on surgery, it is not going to be an easy path.

I don’t expect anyone to understand my decision – in fact, most people who I have talked to really don’t understand, but I am not going to do surgery. Some people seem to think that because I am not going to do surgery that I am choosing death. That is far from the case. I am choosing life and I intend to put up one h*ll of a fight to keep mine!

No one else has walked in my shoes and have been thru the things that I have been thru to be able to understand my reasons. Although there are a bunch of things that have gone into that decision, the path I am going to choose to go down really boils down to two things: 1) I am going to pick the path that I believe that I have the best chance of surviving and 2) my quality of life both long-term and going down that road.

Pretty much everything I have read points to surgery as being the “ideal” path treatment wise. I really don’t believe that. I have really lost faith in medicine. Even forgetting all the crap that I went thru because of gastroparesis and the day-to-day things that we go thru because of being diabetic, I have had some very bad experiences with my foot because of what doctors did.

When my foot got infected back in 2005, the first doctor ignored the signs of infection and I landed in the ER and was admitted to the hospital. While I was in the hospital, I picked up MRSA. The doctor that ignored the infection also ignored the wound getting worse so I changed doctors. Doctor #2 did a culture and discovered the MRSA. Things were going along pretty good until I had another culture and MRI and was told the infection was gone. Antibiotics were stopped and I was placed on a wound VAC. Unfortunately for me, both the culture and MRI stated I still had the infection and my bone turned to mush.

That is when I ended up going to Pittsburgh. I had three surgeries, the first of which removed a lot of the bone from my heel and the third to put in a bone graft. I also did hyperbaric oxygen treatments, which required my staying in Pittsburgh during the week and coming home on weekends. It still took a full year for my foot to close 100%.

Fast forward to 2012 and history seems to repeat itself. A doctor ignored the infection. Another doctor did tests that confirmed the infection but chose to ignore those test results. Then I have a doctor leave me off antibiotics for 5 days after having an allergic reaction to Vancomycin. When I finally got back on an antibiotic, it was one that the bug I have is resistant to and made my wound worse.

It wasn’t diabetes that caused this, it was doctors ignoring infections. And people think I am supposed to trust doctors to do the right thing for me? It wasn’t just one doctor screwing up; I had more screw-ups than I had things being set right.

I have done a lot of crying; I have been very, very angry; I have done a lot praying and have asked God to give me strength to get thru this and I have asked God to help me find a way to forgive those that have screwed up. I have done a lot of reading and I know that my choices go against all medical protocols for osteomyelitis.

Since I have started on the Cubicin, I actually feel better physically. I am starting to get some of my energy back. I am not taking naps in the middle of the day and going to bed at 7 PM. I am waking up most mornings before my alarm goes off. Although I am staying up later, I think the dog liked going to bed early – he bugs me to go upstairs now! My SED rate was down to 12 last week – it was 53 back in January. The wound hasn’t really changed. That worries me but I do believe it will heal. . It is the emotional part of it that I have been struggling with the past two weeks. I know I need to find forgiveness before I can truly heal. I am working on that!

I know that the road ahead is not going to be an easy one. I am a Christian and I know God has my back. I don’t know why I am going thru the things that I am, but I do know that I will make it thru. I am sure I will have days that I will stumble and fall, but God will be there to help me get back up and continue on.

Last night, I saw a picture that I would like to share but I don’t know who it belonged to. The saying is not copyrighted though – “God has a wonderful way of turning negatives into positives.” I saved that picture to my computer so I can look at it as a daily reminder that I will not only make it thru this, but something good will come out of it!

 

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11 thoughts on “Going Against Conventional Medical Treatment

  1. Kelly, we are all entitled to make choices regarding our healthcare. You are an extremely intelligent and well-informed person.
    I know that I can’t realize how very trying and stressful this whole deal has been, particularly in that it’s been going on for such a long time without resolution.
    I look for you every day on Facebook and when I see you’ve put something up, I give a little cheer and say, “you go girl”.
    Peace and healing to you in the coming days.

  2. I sure saw a lot of repetitions of the word “ignored” in your post. And that breaks my heart, because these docs are getting paid fantastic amounts of money to practice medicine properly. Which they’re obviously NOT doing. I sort of feel like you should be filing a lot of malpractice suits, but those take time, patience, energy and MONEY, so I’m not telling you what to do.

    Meanwhile, because I’m not a fortune-teller, I’m not going to try to predict the future, either. In the olden days on Usenet, before there was a DOC, we used to say, “My body, my science experiment!” You have the right to choose the course you want to take, because you are the one living in your body. All I can do is hope for the best possible outcome, whatever it may be. Please take good care of yourself, and keep us updated! Hugs!!

    • I don’t quite understand it Natalie. It is bad enough when you can’t get a doctor to listen to you and run tests, but I don’t get it when they run the test and then still ignore the results. Makes no sense to me! I would be lying if I said that I haven’t thought about a malpractice suit – even spent the money in my head!

      I like your saying – I think I have heard that before. I appreciate the hugs and good thoughts!

  3. Sending you all sorts of supportive and healing vibes, and will keep you in my prayers. This has been an all-around awful experience for you. I’m sorry you’ve had to experience this.

  4. Kelly, I’m praying for you that you’ll have the strength to do what is needed and the wisdom to make the right decisions. I hope that the new doctor and wound center will be on your team and support you on your journey to healing. It’s a good sign that you’re feeling better and starting to have more energy and hopefully you’ll keep improving. Thinking of you, as always.

  5. Kelly,

    I am so sorry to hear this latest development. You have certainly had more than your share of bad news. I will keep you in my prayers that your foot will be healed.

    ~Sue S.

    • Thanks Sue! I appreciate being kept in your prayers – I need all the prayers that I can get. I truly do believe that God will get me thru this but prayers are important!

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