The Best Christmas Gift Ever

Last week I had an appointment for my foot.  In the fall, he switched me to 3 weeks and when I saw him in November, he said 4 weeks.  Last Thursday it had been a month since I saw him.  That was the longest I have gone without seeing a doctor in almost 3 years.

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Although my foot did not look closed to me, he said it was.  My sister had told me that but as I said, it didn’t look closed.  She said the skin is dark in that area most likely because of the stuff we were putting on it, but it really is closed.  I guess it was 2 against 1 so officially, it is closed!

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It has been a very long, long road – if you aren’t familiar with my story, this mess started in April, 2011 so almost 3 years ago.

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Update – What a Long Strange Trip it Has Been!

I have had a few people ask me when I was going to start writing again.  I have actually started a few things then never got around to getting them finished and/or posted. 

In April, I hit the two year mark that I have been dealing with this wound.  September started another downhill spiral with it.  On Friday, September 6th, I had an eye appointment in Pittsburgh.  I was very sick in my stomach that day but my blood sugar was normal.  At first, I thought it was stress.  I had been picked to be in the November issue of the Diabetes Forecast for an article they were doing on complications.  A photographer was coming that Sunday to take pictures and I was more than a little nervous!  You can read that article here, just scroll down towards the bottom. 

By Monday, the photo shoot was over so no reason to still be sick in my stomach.  By then, my blood sugars were also out of whack.  When my sister came to do the dressing on my foot, we noticed air in my foot again.  That happened back in March when the bozo doctor left me without antibiotics then put me on one resistant to the bug I had. 

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What Happened to Ethics in Medicine?

I am starting to think that is a lost art! I was actually planning on writing on this very topic because of something else that happened to me last week then my mail came on Saturday. Every time you think that you have seen it all, you find out you were wrong and you haven’t seen it all yet!

Last month, I wrote, “Fact Versus Fiction in Medical Records” after I got my records from Ohio Valley General Hospital Wound Center. In those records, the doctor stated that I was started on a lower dose of Vancomycin that he actually started me on. I sent a letter to Ohio Valley with a list of corrections to those records. I also included a copy of the script showing my starting dose for Vancomycin. The letter I received on Saturday was a form letter stating that my records that I want amended are “accurate and complete.” You can view the whole letter here.  Once the letter opens, you have to click on it to enlarge it.

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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.

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Fact Versus Fiction in Medical Records

As a lot of you know, I have been dealing with a foot wound that keeps getting progressively worse. The most frustrating part of this for me is dealing with doctors and trying to get medical records straightened out. I have started to write a couple times about the things that have happened since I last wrote on March 5th – every time I start to write, I start to cry. I am going to save that stuff for another day!

I sent for my last set of records from the Ohio Valley General Hospital Wound Care Center. Even though they are the ones that changed my appointment in December, they closed my file and started me as a new patient, yet again. The envelope came the other day and I was afraid to open it. I opened it this morning and let’s just say, there is a reason some of us should not own guns! I am apparently “problematic” because I chose to get the mistakes from the October records corrected. I have a five page letter with corrections this time but thought I would share one big thing here.

When I was at the wound center on February 7th, the doctor gave me a script to get a PICC line inserted and start on Vancomycin. With Vancomycin, they measure the levels in your blood weekly and adjust it up or down depending on the levels in your blood.

This was in my records for February 28th:

Ohio Valley General Hospital Wound Care Center, Dr. Peter Dickinson notes for Kelly Booth

This was the actual script that I was given on February 7th:

Ohio Valley General Hospital prescription written by Dr. Peter Dickinson for Kelly Booth

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Foot: Rollercoaster to Insane Nightmare

I looked at my blog this AM and just saw it has been a month since I last posted.  After my last post, I saw the doctor at Pittsburgh wound center.  I told him that I wanted to try antibiotics and not surgery. 

They made arrangements for me to get a PICC line in, which I did on Monday, February 11th.   Protocols have changed since I was last on IV antibiotics and you now have to have your first infusion done at a hospital and not at home.  I had my first bag of Vancomycin done at the hospital that day.  It was a very long day and I was exhausted when I got home.  The next morning, the home nurse came in to get me started on doing it myself at home.

Friday morning, she had to come back to do blood work.  With Vancomycin, they need to test your levels to make sure you are getting enough of it in your blood.  I didn’t have enough so they upped my dose for Saturday morning.

The following Tuesday, I woke up really sick in my stomach, had a headache and the start of a rash on my face.  I very rarely get headaches so that was not normal for me.  I had a rash from Vancomycin before but it wasn’t on my face.  Nausea, headaches and rashes are all side effects of Vancomycin. 

The nurse was coming again for more blood work.  Later that afternoon, the pharmacist at the infusion company called to tell me that my levels were still low and they needed to up my dose again.  I told her about being sick and was concerned that it was from the increased Vancomycin levels.  She told me that they would only send a small amount of the Vancomycin and would check on me on Wednesday.

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