Sunday, December 07, 2008

In Which We Split Hairs

One of the Stanford doctors called me this afternoon (I'd just been reading about him on the website, and was impressed that his undergrad degree was in English!). He was very nice, and very helpful about answering questions. But when I mentioned the life-expectancy issue, he said, "That would rule him out automatically." He hastened to assure me that the VA will fly Dad over there so the doctors in Palo Alto can make their own assessment, which was reassuring.

Sure enough, when I went back to the website, I saw this item in the list of exclusions:

19. Life expectancy < 12 months due to non-cardiac co-morbid conditions

All right, English majors, let's do a close reading of this, shall we? First of all, I believe that Dad's lowered life expectancy is because of his cardiac issues, not non-cardiac ones (to the extent that one can separate this stuff, the hip bone being connected to the leg bone and so forth and so on). Secondly, Dad and Gary both heard the doctor say "a year," whereas I heard "a year or less."

This is where I wish we'd tape-recorded the meeting, as several people suggested. I thought my Blackberry had that capability and then found out that it didn't, and because I was feeling so cruddy last night, I wasn't up to zipping out to Office Depot for a digital recorder.

But Palo Alto's willing to evaluate him, which is the first step. This is the timeline:

Once he gets there, it will take them 3-4 days to do a bunch of tests to determine if he's a candidate for the study.

If he's a candidate, his case has to be presented to a committee which votes yea or nea. I have no idea how long that takes.

If he's admitted into the study, he'll be randomized either to the control group or the valve. I'm assuming that wouldn't take too long, since it's done by computer.

If he's put in the control group, he'll be sent back to Reno for meds management. If he's chosen for the valve, he'll have the procedure a week or so following the decision, with another week of recuperation in the hospital, and will then be sent back to Reno (on their dime, I believe; I have to confirm that), although he'll have to return to Stanford every month or so for follow-up work.

This is all a best-case scenario, of course. Things could take much longer, or he might be bounced in the 3-4 days of testing. When I ran all this past him, he was very cranky about potentially having to go back to Stanford at regular intervals, but I said, "Dad, this is your chance, okay? You don't make the rules on this. They make the rules on this. If you want in on the study, you have to agree to their conditions, even if those are things you hate, like being on Coumadin" -- which we already know would be a requirement -- "or not drinking."

He grudgingly agreed. Poor Dad! He's used to bending every rule anyone throws down for him, and now he's running into a bunch he can't bend.

The doctor confirmed that Gary and I would be eligible to stay at Fisher House, although it's a little hard for me to believe that the place wouldn't be crammed with the families of service-connected vets, who very properly take priority. We can spring for a hotel if we need to, though. We've decided that we don't want to face commuting back and forth to the city.

I can't leave before Saturday morning, though. I have to give an exam on Friday night . . . although maybe I could have someone proctor it for me and FedEx me the bluebooks? Hmmmm . . . If so, we could leave Wednesday morning. Who knows if Dad will even have left then, though. The Palo Alto people are working on transport, but I have no idea how soon it might happen.

What else? Oh, yeah, the doctor we met with this morning told me to be sure I have Dad's medical power of attorney, which isn't the same as the general one. And it turns out that I don't. So I found the VA form for Healthcare POA and Advanced Directive on the web, filled it in as much as I could, and printed it out to bring to Dad tomorrow.

I also managed to get some of my own work done this afternoon, although I have more to do this evening!


  1. Haven't heard the word proctor in years, not since high school. When I was there the school hired college students as proctors to patrol the campus and make sure none of the students were doing things unseemly or illegal.

    Prayers for safe travel and success on your Dad's tests. I hope this all works out. And if not that they have an alternative suggestion.

    Peace! & Hope!
    Hugs too!

  2. Anonymous4:46 AM

    Dear Susan,

    Thank you for your continued postings - I am so sorry to hear that your parents are both having so much trouble with their physical selves. I so admire the way you just keep on keeping on with all that you have on your plate caring for one of them and caring about both of them. Every time you report a walk, a swim, or a tea break, I cheer for you. And even if I don't always post after reading, I always say a prayer for you and your family and your friends at the same time.

    Blessings on you and those you love,


  3. Oh, Beloved Sister: you're trying to deal with so much, so fast. You are all, of course, in my prayers.

    No, there is a difference between General DPOA and Medical DPOA. However, you might check his General DPOA in any case. I've found that for the last five to ten years, attorneys doing General DPOA's have been asking, "Would you also like to make a statement about your health care," and including paragraphs on the subject. That would, of course, be a matter of Nevada laws, but you should look.

    Palliative care is a good call. And, no, it shouldn't interfere in principle with the study meds; as you know, that's the difference between palliative care and hospice care.

    As for Palo Alto: I used to fly out to the Bay Area regularly. As I recall, there are some hotels by the west end of the San Mateo Bridge that are significantly cheaper (even within the same chain) than those closer to the airport. Good luck.

  4. I just read this post and the one before it. So hard a place to be in. My prayers are with you.


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