Tomorrow is the first of several doctor appointments I am not looking forward to. Tomorrow I see my infectious disease doctor. He is great, but it can be a battle to get the iv antibiotics I need. The ID doctor i see while i am admitted has completely different philosophies on treatment then my outpatient doctor. My hospital ID likes to hit these infections with the strong iv meds and usually more then one at a time, which I prefer. My outpatient tends to use the milder antibiotics, saving the strong stuff for major infections down the road. Once the bacteria becomes resistant you are pretty much screwed. However, this infection has been very bad and lowered my lung function dramatically, so this is a major issue. What also hurts me is that in the middle of my out patient therapy, I was admitted and they changed some things around. Now, 10 days later, I have to go back to the outpatient ID doctor, so they will want to go back to being more conservative. All of these problems stem from my insurance company not accepting my in hospital ID as a outpatient. Now I still could see the in patient doctor but it would be another $2500 out of pocket annually plus the office fee of $80 per appointment they require. Since I see my ID like 30 times a year, that's way to much to pay out of pocket. I have been on antibiotics for 1 month straight and there has been improvement but I still need the hard stuff. I had told my outpatient ID doctor I believed this was a severe infection and that it would be at least 2 months of antibiotics, it once again looks like I am right.
The key here is that patients know their body, and I know what's wrong and how long it takes to recover. In case anyone is keeping score I have been right on every diagnosis I believed I had since this all started. The hard part is getting the doctors to realize this before the results confirm it. Those few extra days of treatments that I know will work before the tests come back always benefit me in the long run. So tomorrow will suck because I will have to plead my case to continue my therapy, but I will get it, and will continue to recover. Thursday will be the tough day, seeing my pulmonologist and figuring out a game plan for this up coming lung transplant. I will continue to fight, and never give up. I just hope my brain can handle all the bad news and stay strong. I just want to live and watch my son grow, and grow old with my wife...giving them both all the love I can in the process. I can't write into words how much my love for them grows day by day, and how much it hurts knowing that one day CF will win. I just hope it's not until I am 80.