Battling Infection?

I have a port in my chest which helps me take medicine for my Hemophilia. I need to take medication at least and due to this frequency, my veins can’t take the constant use. Thus the port-a-cath. It is a catheter that goes into a major artery and remains under your skin in order to help protect you against infection. In order to access it, you must insert a needle into the center of the port and then you can give yourself medications.

I have had several catheters through my life for this purpose. Starting nearly 20 years ago in junior high when I got my first Hickman. I must say that the port-a-cath is much less likely to get infection. Those Hickmans tended to get infected once every 18 months about, these tend to get infected maybe every 4 or 5 years. My last port lasted I think 7 or 8 years, got infected, and then wore out.

I have had the current port about 3 years now, and I believe I am battling an infection currently but have had no way to prove it. About two months ago, I had it accessed over a weekend to deal with a worse than usual bleeding problem.¬†When I took it out, it remained sore for about a week and a half. It was also slightly red (though not much) and firm. I finally called my doctors and made an appointment to come in. They checked it out, thought it didn’t look terrible, I didn’t have a fever, and they took a blood culture and sent me home.

That was nearly 6 weeks ago now, and it is still sore. The port-a-cath hasn’t been accessed since then as we thought perhaps it was just bruised and so I have been going in to get medicine at the infusion center through my veins. This sucks up more time in my life than I particularly like, but what am I supposed to do? I still need my medicine.

The port still is in a great deal of pain, I think it has gotten a little puffier since then, more red, and is very warm to the touch compared to the other side of my chest. The only symptom I am missing from an infection is the fever and a positive blood culture. I am just making the assumption that I have an infection that is not in my blood stream.

I am really becoming overly annoyed by my doctoring crew. I have had issues with them with the last port infection I had a few years ago where they just wanted to pull the port at first sign of infection. I don’t think this is the correct course of action as I have been told by previous doctors that you can only place a port in so many locations, and I have already had several and hopefully have decades left to live (I am only in my early 30s). I require my doctor to at least make an attempt at fixing the infection before they just take the easy way out and bail. 1

This time they said they would try to fix the infection, but now instead they are making me sit with it without figuring out what is wrong even though I am continually asking them “What is the next step?” They just sort of shrug their shoulders. I know from experience that doctors generally make a big deal of infections. They are “life threatening.” So why is it that with this infection they are treating it like it is no big deal. Not even a big enough deal to put me on precautionary antibiotics?

I am utterly furious with my doctors and my hospital. I feel that because I am in the middle of a problem though that I need to stay at this hospital until it is finished but I am now searching for options at other hospitals. The problem with Hemophilia is that there are few doctors out there who specialize in it. UW Health which is a major hospital in the Madison area only has one (Dr. Elliot Williams). 2

I’ve gone to UW-Health my nearly my entire life. Ever since we moved to the Madison area when I was 6 or 7. It is scary moving to a different hospital. In fact, there have been times where I have considered moving to a different city, good hospitals has been part of the consideration because over all I have been really happy with the experience that I have had here.

However, if any hospitals are interested in having a Severe Hemophiliac as their patient in the Madison area, give me a message or something. I’m listening. 3

Show 3 footnotes

  1. Not to mention that the cost of an operation is likely much higher than just giving me some antibiotics (which they would have to give me anyway) and fixing the issue. Doctors are known to take the more expensive option.
  2. Yes I am naming names. He is a terrible doctor, for any hemophiliacs out there, avoid him like the plague.
  3. I actually think this is a fair offer. There have been reports recently that Hospitals have been using Hemophilia medication in heart surgery largely just to increase the cost of the operation as factor costs over $10,000 per dose. Having a Hemophiliac to my severity is equivalent to more than half million dollars per year.