Tuesday, December 30, 2008

City of Dopes strikes again...

I'm really starting to be bothered by the utter ineptitude of the administrative people there.

First, they claimed (incorrectly) that I'd been told a week ago about the appointment change, which is frankly a bald-faced lie. Then they said they couldn't get me in to see SF until the 13th, which is too late. Later that same day, PinnacleCare spoke with them when they called back to confirm the meeting that I'd already cancelled. Evidently they claimed I didn't cancel it! Fortunately I told PinnacleCare exactly whom I'd spoken with, and they straightened it out. We left it last night that PinnacleCare would speak with them first thing and they would try to get me in today, and that they would certainly get me in before the 13th as Dr. SF agreed that was too long.

So this morning they still had no time today, but they at least said they could see me "anytime tomorrow or Friday." I offered specific times. Then they said they couldn't do those times. They offered one time, first thing Friday morning. This is a nightmare as it's 50 miles away and in a heavy commute artery, but as this is January 2nd hopefully most people will not be on the road.

So I agreed to this time, and PinnacleCare called them back and left a message. City of Dopes took THREE HOURS (and two followups) from PinnacleCare before they actually said okay to that time, and they then said that Dr. SF was going to personally call me today. I'm actually getting a bit nervous because he wouldn't have that urgency if he didn't think I was progressing more rapidly. So now I want to speak with him.

Anybody want to bet that he didn't call me?

Honestly, this has reached the point where they are so utterly disorganized and inept that I'm not confident in the quality of my care there. My life will literally be in their hands. If they can't get an appointment straight, how can I be confident that they'll give me the right medicine at the right time? I will be on up to 6 antibiotics alone, plus blood transfusions, platelet infusions, medication for the side effects of chemo, etc. etc. How can I trust them to have any clue of what is going on?

It's infuriating.

I don't normally do this, but I'm going to call Dr. F who runs the whole place tomorrow, and I'm going to tell him that I'm rapidly losing confidence in the quality of the care there.

Meanwhile, Dr. KA, a very prominent guy at Dana Farber, has been reviewing my materials and has decided to handle my case personally rather than refer it to his team, which is good. He is a "novel drug guy" as opposed to a "transplant guy" so it will be an interesting counterpoint to the transplant-speak that I've been immersed in, and probably as opposite to BB as one can find short of JB whom I've already ruled out. I'll be speaking with him on the morning of the 12th.

Lastly, in addition to seeing Dr. SJ on the 23rd in New York, PinnacleCare has set me up with somebody at Memorial Sloan-Kettering for the following morning, which can't hurt.

As it stands now, I'm going out this Friday morning to City of Dopes. Assuming that actually takes place, I'll post more information here as it arrives.

Happy New Year.