Meeting with Tufts

Friday, December 19, 2008
Tufts Transplant meeting
This entry is written by Dana, significant-other, chairperson in chief of keeping my on my meds, disciplinarian ans over-all leader of the cheer squad extraordinaire...

Hi – thought I’d drop a quick note to let everyone know how it went yesterday at Tufts – I expect Mark will follow-up with most of you himself -

The doc there, Hannah Lee, is either Chinese-American or Korean-American. Likely she’s much older than we think, but she looks about 12 yrs old! She was pretty thorough and pretty straight-forward and we both liked her. She spent about an hour with us – and her PA is very involved as well and was in the room for the whole ‘interview’ – I expect we might talk more with the PA than w/Dr. Lee.

They did a CT scan of his abdomen again just to take a look at whatever it is that’s there so she could see her own slides. And then they took 10 tubes of blood! We’ll have to go back in early January for a couple of days of more tests and appts….he’ll see a pulmonologist, nutritionist, social workers, Dr. Lee, they’ll probably do a liver biopsy, and more…..

This doesn’t mean that he’s on a transplant list yet – that isn’t determined until after all the tests and appts are done – if his MELD score remains basically where it is, then he isn’t really sick enough to be very high on the list. But it means that the meds are keeping things in check and that the liver is still functioning. The scores run from the 40s (very sick) to a minimum of 13 (to qualify to be on a list). His scores have gone back and forth between the low teen’s to close to 20, but they haven’t been above 20 for quite a few years.
He’s not thrilled about some of her orders: cut back to almost a no-sodium diet, lose weight, start exercising, and start taking one of the liquid meds that he hates. But it has to be done – being overweight and losing muscle mass are things that count against a prospective transplant recipient. So we’ll bring the exercise bike into the house and plant it in front of the TV, and we’ll start looking more closely at labels when we shop – these are all manageable things. And I’ll likely get more healthy in the process too, which is not a bad thing!
It’s about a 3hr drive to Boston – but it’s basically all interstate so it’s not too bad. The road does go through the Berkshires, so winter weather could be iffy – but, again, manageable.
So, I guess that’s the nutshell version……hope everyone is well…
Dana