Re: Mayo--Day 2

[Guest guest]

Tom,

Thanks for keeping everyone posted, sharing experiences can be so valuable and

is a great educational tool. I took my daughter to that clinic for a second

opinion and was also quite impressed; they are certainly a well oiled machine. I

am so glad that you have heard good news! I hope they find out what the mystery

spot is and that it continues to be good news. I had to chuckle at your counting

the tubes of blood, my daughters used to have a " contest " to see who gave more

blood but Suzanne quickly won the contest shortly after diagnosis.

I wanted to ask about your UC/Crohn's and whether you have had difficulty with

controlling your IBD - just curious so there's no hurry to answer. Also curious

as to why you wrote it the way you did - is it considered to be indeterminant or

did you get a dx of UC & Crohn's?

LINDA

(Mom of Suzanne, 18; UC 1/04; PSC 3/04; j-pouch 2/07)

-------------- Original message ----------------------

> Much lighter day today, thankfully.

>

>No definitive conclusions,

> but it does not look cancerous. That's the best news I've had in years.

>

> The day wrapped up with eight more tubes of blood drawn.

>

> All in all, another exhausting day, but my mind is more at ease now.

> We'll know more as time progresses.

>

> Tom

> PSC 1999

> UC/Crohns 2004

>

>

Much lighter day today, thankfully.

The day began with an EKG. Very routine. Very uneventful.

Next was a meeting with a social worker. It was a good conversation

where we went over the transplant process from a high level, and we

discussed things like our social support mechanisms, financial

arrangements, and making sure we have covered the major emotional

issues. It is critical that we all have a solid support network,

whether it is family, friends, neighbors, or coworkers.

I was then invited to participate in a research study. Mayo is

building a national registry of patients either with or at risk of

developing bile duct cancers. (This is different from the StoPSC

project.) They are working to determine the causes of these cancers,

whether genetic, environmental, or otherwise. I gladly agreed to

participate.

The big event of the day was an abdominal ultrasound. I already knew

that my liver and spleen are enlarged. Now I know how much...the

radiologist said that they are so large that they are encroaching on

the space that normally would be taken by the stomach as it fills with

food. No wonder I can't eat like I once could. They also took a look

at the " mystery spot " in the left lobe. No definitive conclusions,

but it does not look cancerous. That's the best news I've had in years.

The day wrapped up with eight more tubes of blood drawn.

All in all, another exhausting day, but my mind is more at ease now.

We'll know more as time progresses.

Tom

PSC 1999

UC/Crohns 2004