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 11^th.   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.

Wednesday, I woke up sick again.  I started the higher dose and all of a sudden, my neck, face and ears all felt like they are swelling up. I immediately closed off the tubing so that the Vancomycin stopped.  They give you an anaphylaxis kit with Vancomycin.  I immediately got that.  They had a prescription strength Benadryl pill in the kit that you were supposed to take first. 

The epinephrine kit was a total failure!  It was in a glass tube that you had to break the top off.  I had trouble but was able to break it.  You were supposed to put a needle in to get the epinephrine out and transfer it to another needle to inject yourself with.  After 29 years of using syringes, I couldn’t get it into the first needle!  I was getting very scared so called 911.

That led to a trip to the emergency room.  The EMT told me that those kits are pretty hard to use even when you know how to use them.  She told me that they would probably give me more Benadryl, some steroids and Pepcid.  I thought that was for your stomach but they apparently use it with allergic reactions also.  I did get the scientific explanation both the EMT and doctor in the ER, but … I did retain something about H2 and Benadryl is H1.   What the EMT told me is what they did for me in the ER.  The ER doctor gave me a script for some Epi pens so if something happens again, I at least won’t have to wait for EMTs to show up! 

This is when the real nightmare starts! 

It was late afternoon until I got back from the ER.  The pharmacist had called twice while I was gone so I called her first.  When she sent the Vancomycin the day before, she put a note in that she was going to call my doctor at the wound center.  He was out of town that week.  When I called her back, she had called and discovered that little fact.  She said she would call my nurse at the wound center to let her know. 

Since it was almost 4, I decided I would just wait till Thursday morning to call the wound center.  I talked to my nurse first thing and she said she would try to get hold of the doctor.  I didn’t hear anything back so Friday morning, I called again.  She said she had actually talked to him on Thursday and he said he would check into something and get back to her – he didn’t get back to her. 

I asked her if one of the other doctors could look at my culture and prescribe something else – she said they don’t like to do that.  The wound center is getting paid between $600 and $775 a week from my insurance company so that did not sit too well with me.  The doctor bills separately.  They were the ones that had the culture to know what antibiotic I needed to be on. Of course, it was like pulling teeth to try and get a copy of the culture.

About 11, I called the hospital to get them involved.  I wanted the culture and was told it was a liability to email it to me.  I told her it was more of a liability if they didn’t send it to me!  She told me that she would make some phone calls to try to find out what was going one.

Finally about 2:30, the doctor called in.  The nurse called me to let me know that she had called in Zyvox to my pharmacy – that is a very expensive drug (about $100 a pill) that I did not think my insurance would cover.  I certainly can’t afford to buy it out of pocket.  I called my pharmacy and they said they would check and call me back.  Although my insurance would pay for it, the pharmacy checked with several suppliers and no one had it.  I was actually relieved because I took that back in 2005 and it made me very sick.  I was younger, healthier and didn’t have the allergy issues back then so I was afraid to even try it.

I called the wound center again and the nurse wasn’t sure if she could even get hold of the doctor.  I was fuming!  It was Friday afternoon and I am stuck without antibiotics.  My foot was very sore on Friday so I knew things were starting to go backwards again.  I tried going to a walk-in center and they wouldn’t even see me.  I called the nurse from in the car and told them that they have to do something.

She called after I got home and he gave orders for another IV antibiotic but the infusion center at the hospital was closed until Monday so she couldn’t even set it up.  I was without antibiotics for the weekend.

Monday, I started on Rocephin at the hospital.  I saw the doctor at the wound care center later that week.  In the mean time, I started hearing a funny noise occasionally and thought it was my boot rubbing.  When he came in the room, he pressed on my foot and there was the sound.  He said, “that answers that.”  I asked him what and he said that I had undermining and there was air under the skin.  Undermining is a wound under the skin.  I don’t understand the technical differences, but undermining is different than the tunneling I had going on and prior to last week, I was told I did not have undermining.  That is not a good sign!  When he measured the tunnel itself, it went from approximately 1 inch two weeks before to over 2 inches.  Needless to say, I was not happy. 

I did tell him that my foot had been sore since that “antibiotic crazy” Friday.  Normally it would feel better 2-3 days after starting an antibiotic and it wasn’t feeling better. 

After finally getting a copy of the culture, I started researching the bug that I have and not liking some of the stuff that I was reading.  Here is one paragraph from a Medscape article: 

http://emedicine.medscape.com/article/216993-overview

Enterococci have both an intrinsic and acquired resistance to antibiotics, making them important nosocomial pathogens. Intrinsically, enterococci tolerate or resist beta-lactam antibiotics because they contain penicillin-binding proteins (PBPs); therefore, they are still able to synthesize some cell-wall components. They are intrinsically resistant to penicillinase-susceptible penicillin (low level), penicillinase-resistant penicillins, cephalosporins, nalidixic acid, aztreonam, macrolides, and low levels of clindamycin and aminoglycosides. They use already-formed folic acid, which allows them to bypass the inhibition of folate synthesis, resulting in resistance to trimethoprim-sulfamethoxazole.

I was also getting very concerned because I found numerous articles that stated that Enteroccoci is resistant to Rocephin.  It was not one of the drugs listed on the culture that I should be on.  So why am I on this drug? From everything I have read, when they put you on antibiotics that the bug is resistant to, they make it worse. 

Prior to Saturday, I would hear the swooshing sound once or twice from the time I started upstairs until I got to my bed.  Saturday night, I went to go up to bed and heard the noise the whole way upstairs until I got to my bed plus it was louder.  That was not a good sign. 

I was awake all night just crying and spent most of Sunday crying.  I am angry – this should never have happened.  I am scared.  I don’t want to die but right now, I have lost all hope that anyone is actually going to do something right and help me.  I feel lost.  I feel alone.  I can’t even truly begin to explain how I feel right now. 

When my sister came on Sunday, she very much surprised me that she told me that in the very least, I needed to get a second opinion.  I had emailed her the culture and she also started looking into it.   My sister is a nurse and has wound experience where she works.  She is also very surprised to what is going on. 

Yesterday morning, I called the wound center to see if they would switch me to a different antibiotic.  I didn’t say anything about what I read about the bug I have being resistant to Rocephin.  I told her about being sicker, my blood sugar being out of whack and the now constant noises coming out of my foot.  They never called back.

When my sister came after she got off work, she now said, “you need to do something.”  She said my foot looked a lot worse that what it did Thursday when I went to the wound center.  

Last week, I had called to set up medical transportation to make it easier on my family and I could go for labs on my own.  Getting supplies when you have home nurses coming in is hard.  I can’t order test strips thru my supply company when a home nurse is coming in, and I can understand that the home nursing agency is not going to give me 18 strips of AccuChek Aviva strips when they are coming in one day a week.  I needed to make them go away for that very reason. 

Everything on the medical transportation web site says they won’t take you out of the county when the service is available in the county so I never bothered setting it up before.  They have a wound center here but it is not a good one.   When I actually called them, I found out that they do make trips out of the county but only on certain days.  She also brought up a wound center that is a couple hours from here that is supposedly good.

After the Pittsburgh wound center did not call me back, I called this other wound center.  She had something this week but it was for 8 AM and the van won’t take you for appointments before 9.  I got one set up for next week.  After I called my sister to let her know, she called back and said that if I can get that 8 AM appointment, her husband would get me there.  When I called back, they were closed for the day.  I called this AM and the slot had been taken already.  However, when I told her what was going on, she put me on hold for awhile and got back on the phone – they were going to fit me in!  Pretty sad that a wound center that I have never been to is more concerned about my wound than the one I have been going to. 

I then called the Pittsburgh wound center and asked to speak to the director.  She goes between two facilities so they gave me another number to call.  I cancelled the appointment I had for this week then called the other number.  I was not very happy with that phone call after I told her what was going on, I heard, “what do you want me to do.” I said that I suggest you put something in place before this happens to someone else.  I don’t believe in suing people, but the next person that goes thru this might not feel the same about suing.  This was blatant malpractice as far as I am concerned! 

This whole thing is just totally surreal.  I went to that wound center because I thought I had the best chance of getting my foot healed.  Now I am so far behind because of their screw-ups and now worried about staying alive.  The only words that express what I think of that wound center is “pure evil.”  There is no other way to describe the things that have happened.  To quote a friend of mine, infections are “time sensitive.”  I cannot believe that the wound center I used to say I have my leg because of is now ignoring infections and may have cost me my life. 

I am attaching the culture here with the bug that I have.  It says “sparse growth” but we don’t know how much is in my bone – the sample submitted to the lab was tissue and not bone.  I stuck a paragraph from the MRI below the culture that talks about a large defect.