I have been trying to get an appointment with an infectious disease specialist since December 14th. I even got my nurse case manager on it, to no avail. Nobody was going to be able to see me until mid-January.
I happen to have an acquaintance who is a physician, as is her husband. It's the kind of relationship brought about by kids - our children are friends, so we see each other at birthday parties, volunteering at school, field trips, etc. We are very friendly but not good friends; she's been very busy working, as have I, and except for our children (who are now both A+ students in a rigorous IB program), we are in different social circles.
Another friend who knows both of us told me I should tap her as a resource to get seen quicker.
Now, normally I'm not shy, and would do that. I've done it with different people in other capacities. But, she is going through something worse than I'm going through - her son - my son's friend since 3rd grade - has a serious disease and spends a lot of time in the hospital. So, of course I know she has other things on her mind, and no way am I going to bother her.
Yesterday though, she called me. She'd heard about my situation and wanted to help. 30 minutes after the phone call, I had an appointment with a specialist - for this morning.
I just got home.
I'm not bitter, this is the world we live in. It isn't what you know/how sick you are. Who you know is the most important thing in any endeavor.
Anyway, the doctor said several interesting things. First, in his 20 years of practice, he had never seen a case of c-diff as bad as mine where the person didn't end up losing their colon or their life (or both). He looked at me in amazement. I was the worst he'd ever seen.
He said my gallbladder was the size of a melon on the hospital scans. (I don't know what that means).
He also is concerned that I am still not well and thinks I possibly have a bowel perforation and/or abscess.
So, it's not over yet.
They are arranging for another abdominal CT scan, STAT.
STAT, I'm sure, means sometime after the holidays when folks get around to it.
He apologized for my having to have more radiation. It was my turn to look at him in amazement. I said, "Oh, don't worry, the cancer will get me long before radiation does."
I asked him what would be the "cure" for a perforation or abscess and he said they would put tubes in to drain it, and it didn't necessarily mean surgery, which eased my mind a bit. I've been living in fear of shitting into a bag for over a month now, and I apologize to any of you readers who have stomas. I just don't think I could do it.
Of course, that isn't true, is it? The human capacity for putting up with what we thought we couldn't knows no end. I imagine if I had to have a stoma, I would handle it as I did everything else - probably with a lot of poop jokes.
He also said c-diff comes back in 7 days, "like clockwork." He wants me to finish my vancomycin, (last one today) and then, just ..... wait.
7 days from now is the 29th. He said, "that'll get you through the holidays."
That frightens me beyond measure. I know for a fact I won't survive another bout of c-diff like I had before. And, the doctor seemed pretty amazed I survived it the first time. Unfortunately, I can't live on antibiotics forever so I have to stop.
But, I have refills and I'm refilling them. At the slightest change - a loose BM, a new pain, a funny feeling, I'm starting up again. The fear of c-diff is a lot stronger than any doctor's opinion, and there is still no certainty that I am over it. If my bowel is, indeed, perforated, than it seems like stopping the antibiotics would be a bad idea. But, I don't have an MD so I will trust what he says.
XRT and gamma knife
6 days ago