Hi all, we have a bit of drama to report. If you remember about two weeks ago Ann started running a temperature, then got a little sore throat, and a raised lymph node (scared my silly). Most of these resolved after a week of Biaxin and the twice weekly Bactrim she is already taking.
I say most because the sore throat didn't really resolve. The "sore" spot moved from the right side of her neck to the left, where the node came up. Once it got to that side of her throat the pain it was causing slowly started to diminish. Then two days ago Ann started to have a "slight" ear ache from inside her left ear.
The ear ache and the sore throat gradually began to increase in intensity until yesterday she was telling me that she was uncomfortable speaking. The title of today's post is pretty much a direct quote from her.
So we called MDA and asked what to do and when they got back to us they said to go in to our local hematologist office and then call them back. So we called Mary Bird Perkins in Baton Rouge and got an early appointment with our hematologist's PA. That should have been my first signal that we where in for some serious frustration.
So we get in to see the PA after a full blood draw, and she just starts going over Ann's CBC results (the CBC results looked very good, I just forgot to ask for a copy). At which point we have to jump in and "remind" her that the reason we where there was because of the throat and ear. She acted surprised and then looked inside Ann's mouth and noted that her throat was indeed "red". Then she made the dismissive and condescending observation that "Oh...the throat and ear are connected. You should really see and ENT". Brilliant!
So do they have one they can refer us to? No. Do you want us to follow up before our next scheduled appointment? No. At this point both Ann and I are getting that uncomfortable sinking feeling. In particular I am starting to be struck by the impression that MBP in Baton Rouge is a mill that is geared to only service geriatric cancer patients. I know that is not possible to direct.y compare institutions like MDA to ones like MPB as one is seriously better funded.
However, when we are taking about a condition as serious as recovering from a BMT you would expect some continuity of care from even smaller organizations. That means even if you don't have ever medical specialty on staff like MDA does then at a minimum you should at least provide a list of co-operating specialists who you regularly work with. Older patients have loads of doctors that they where probably seeing well before they got sick. This just isn't true of 32 year olds. Ann got so frustrated by this that she started crying.
Anyway after lots of waiting we did get to see and ENT. Who it turns out was the same one that sent Ann's blood out in December on a hunch something was wrong. So he was a bit surprised to see her again. To his credit he quietly listened and Ann and I detailed out her medical history for the last couple of months and the current prescriptions she was on. But you could tell he was a bit freaked out by the entire thing. I'm sure not many CBT patients walk through his door.
He did a basic exam and discovered a 0.5 to 1 cm ulcer on the back left side of her throat. He believed it was viral but, confessed he was ignorant of GVHD. So to be on the safe side he took a swab and prescribed 500mg of Valtrex (she is already taking 500mg, so now she's on 1000mg total) and a Lydicane mouth wash to help in case the pain got too bad to Ann to swallow. Thank goodness it hasn't. What kills me is that the ENT found the ulcer in less than 10 seconds with a light and a tongue depressor, where as the PA at MBP has looked at Ann's throat twice and missed it.
Since the ENT is not plugged in with the Hematologist at MBP or MDA we are going to have to manually update everyone with the results of the swab. Frankly I am starting to get envious of people who live near the major institutes. Anybody near MDA, Sloan, Dana Faber, or City of Hope need an mechanical engineer/construction manager or looking to sell a house?
Ann has been avoiding talking and says that the pain is better than yesterday. Hopefully it is clearing up. However if it doesn't by Friday or Saturday we have standing orders to return to MDA and check in at the ER until we can get readmitted into the hospital.