Hiding Out From The Hospital

[REP]

I'm in early renal failure from FSGS. I also get recurrent renal infections, which are causing scarring, which adds to the kidney failure. I had an infection in December that finally cleared in February, and I came down with another one (different organism) last week.

My doctor prescribed antibiotics and took the week off. He came back and left a message saying he's considering incarcerating me in the hospital for a Vancomycin IV. Nooooooooo! I did a dip this morning and it was normal (well, no infection - I never have a comletely normal dip). I hope that's enough to keep me out of the Sickness Prison.

[Warpy]

1. Vanco is a last line drug

for a lot of resistant organisms. I think the thinking is that you're colonized with a resistant bug (or will be, thanks to recurrent infections and multiple antibiotics) and you need a short course of IV Vanco to eliminate all the organisms once and for all.

These multiple infections don't just come out of nowhere. I assume your immune system is reasonably normal (no advanced HIV) and that you've been tested for reflux.

One avenue you might explore is going in for 24 hours and being trained to self administer the Vanco at home with a daily visit from an IV nurse to check or restart the site as needed. It can be done safely at home with support, and may keep you out of the hospital if they're considering a longer course of therapy.

Good luck.

[REP]

2. My Immune System Is Not Normal

I'm severely immunocompromised. I don't have HIV, but I am considered to be about that immunocompromised. I would explain how these infections come about, but it's pretty complicated for lay people.

I know what Vancomycin is, and that's just one reason why I don't want to go to the hosptial.

I was complaining, not asking for advice. My condition is so rare I don't expect any lay people to know about it or understand.

[Warpy]

3. Uh, I'm an RN

Just thought you'd like to know.

You're allowed to complain.

[REP]

4. Ah

I get tired of people "explaining" my extremely rare set of conditions to me and getting it wrong, or telling me things I already know. I'm sure you understand. I think everyone with a chronic disease gets a belly full of this.

By any chance, is your specialty nephrology?

[Warpy]

5. I worked in adult medicine

as opposed to womens' and children's specialties. My two main areas are neurology/neuropsychiatry and cardiology/cardiothoracic and vascular surgery. I've worked in all areas, though, so I was vaguely familiar with your condition, although looking up the particulars is on my to do list.

I don't mind well meaning people explaining chronic illness to me as much as I do the well meaning people who read things like Prevention Magazine and tell me what I really need to do is throw away the drugs that keep me alive and go in for Rolfing or Ayurveda and shouldn't I come to terms with the fact that I'm sick because I want to be sick, somewere deep down, or that I am atoning for nasty karma in a past life and maybe I should just stop postponing the inevitable by getting treatment, blah blah blah. I know they mean well, but I have to have an active fantasy life sometimes to deflect my urge to violence.

That's my rant du jour. I'm sure I'll have another one tomorrow.

[REP]

6. I Just Gave The Simple Dx

My biopsy findings are pretty unusual, as there are at least two different diseases at work, in addition to the scarring from the repeated renal infections. Plus I've got a rheumatoid arthritis and diabetes and Crohn's disease plus some other crap.

My favorite is the "should you be having coffee with kidney disease" people. Rather than explaining it's on my list of "free" (unlimited consumption) foods, I just ask them where they got their medical degree.

[Warpy]

7. Most of us who have chronic illness

seem to be blessed with more than one.

I've developed a frosty "Thanks for your concern," that would cool soup. It works for me.