Re: Cogan

[Guest guest]

>

> Dear ,

> I shivered when I read that you were hospitalized with septicemia from

your HHT catheter. I had a central venous catheter in my chest for my HHT

infusion pump, which I hope I never have to experience again. My father died of

sepsis because of a negligent doctor and now the mere mention of the name still

gives me shivvers.

>

> I met Bobby in Houston when we were in the same trial and I met a true

friend. She is a hoot and a lot of fun to be around. I think at the time you

all were in Oregon at the same time and never met is because you were not in a

group similiar to this one.

________________________

Hi Lottie,

I put you in the hoot category also!

Many of us with those catherters for HHT got infections....Jody C. from Florida

and also Jerry Mayfield. It was put in at MDACC and many other places that saw

it afterwards thought it was archaic....with it just stitched to my chest wall.

Dr. D wanted me to get rid of it asap.....so Carolyn pulled it out. When I was

feeling off, I knew something was wrong and I had to insist that my local onc

put me in the hospital.....he thought I needed some psy. help!! until the next

night when the nurse told him the catheter was infected. I was in for more than

a week with heavy duty IV anti-biotics, and pills when I went home. I was

supposed to return to MDACC to get Gleevec but was not well enough to travel and

the trial closed........but Dr. D had an opening right here in Oregon.

I was very active on the first cml group, so I did know lots of

cmlers....and we were all scrambling to get into an STI trial if we qualified.

When I was able to be treated at OHSU, I could just drive up, often I would

spend the night and meet up with the women I started the trial with. Eventually

driving to Portland just became a routine in my life and I was still working as

a physical therapist so it was a quick trip up and back. But I do have some good

cml friends and also some good cml friends that did not survive. At MDACC I was

frustrated that it was not more personable....they wanted to take all this blood

whether they needed it or not (their routine), but I questioned and challenged

them. At OHSU, Dr. Druker initially saw ALL the cml patients. It is still a

small clinic which many really appreciate...and all the leuk. docs are great.

But I never had to take up residence to get treatment like you early Sprycel

pioneers did.

C.