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Re: Kronberg post# 35059

Saturday, 05/16/2020 1:59:24 AM

Saturday, May 16, 2020 1:59:24 AM

Post# of 44784
No I've been pretty open about it, I don't mind repeating. I was diagnosed with PH+ ALL about 6 and 1/2 years ago. My initial treatment was at Cedars Sinai, and it was actually during my first catheter infection, which occurred after half of 8 planned courses of chemo, I went to City of Hope to discuss a stem cell transplant after the chemo. It turned out the infection was a blessing as my Dr. at City of Hope determined that he believed that I'd not need the additional 4 courses of chemo, he believed oral chemo would be able to achieve what was needed to do the stem cells, which he agreed would be done at COH.

I had some complications with colds and flu that prolonged when I'd get the stem cells but they were donated, and cryogenically preserved. That required a Hickman catheter which is larger in diameter and goes into the chest. I'd been pushing for it's removal once I left the hospital, but my Dr. liked the fact that in an emergency they could push medications in immediately, so it wasn't removed until it finally infected causing another brief hospital stay.

In the five years since the stem cell transplant I've had other complications a few times, a couple cases of pneumonia, shingles, as well as the infection. Otherwise I'm reasonably healthy, though still on the chemo, which does have some negative side effects, but I can do most things I'd like to. I can't say enough about how great the treatment is at COH.

Both Cedars Sinai and COH try to do an excellent job of keeping rooms sanitary, yet I had rare infections at both that were believed to be picked up in the hospital. I'm also an investor in PCTL and I believe their system might have prevented it. As I said, the first infection proved to be a blessing, but I would probably have seen COH well before the 8th course of chemo. Essentially I was home for at least a few days between each course. During one home break I was actually able to arrange a trade in for a 34 ft sailboat we owned for a 41 footer. I've not used it that much as my daughter is living on it, but hopefully if Covid-19 permits we'll make a few trips to Catalina this Summer.

Gary