Tuesday, November 11, 2008

Irreversible Damage

The doctors in San Francisco have refused to do open-heart surgery on my father, because they feel the risk is too great in his case and because he already has irreversible damage to his heart that a valve replacement couldn't fix.

They're still willing to do the cardiac catheterization, though -- a much lower-risk procedure -- which might involve putting in stents, which might improve his quality of life. That procedure still has to happen in San Francisco, because Reno does diagnostic cath-lab stuff, but no therapeutic procedures.

The average survival time for someone in Dad's condition is two years. Being realistic, I know that someone who's eighty-six is a short-timer anyway, but I'd like his remaining time to be as vigorous and healthy as possible, and he's now lost his remaining chance of any dramatic improvement in quality of life. Of course, given the recovery time from open-heart surgery, it probably all evens out anyway.

Still, I was pretty upset when I heard the news. Fran told me when I went to the apartment to pick her up; Dad had talked to her on the phone. I thought it must be wrong, that one of them had misheard something. When I got to the ICU, I demanded that the nurse tell me what was going on. She said that Dad should tell me, but two doctors (both young and female) showed up very shortly thereafter, probably sent by the nurse, and explained everything. They understood why I was upset, but I still felt a bit like they were treating me like I was the problem.

Which, in that moment, I guess I was, since Dad was very calm about everything and Fran kept cracking jokes. (What's that I tell medical students? All family members react differently to bad news?)

Intellectually, I know that medical treatment reaches a point of diminishing returns, and I've always known my father was a bad surgical candidate; I was surprised when we were told he'd have the surgery. And I'm not a fan of torturing the elderly and infirm with horribly invasive and painful procedures, honest.

But emotionally, I felt like I'd just been punched in the stomach. Hope had been held out and snatched away again, and Dad had just been given two years to live. We'd just arrived at the "nothing more we can do for him" point. (The doctors said that there's a miniscule chance that when the SF team does the cath procedure, which is more informative than the other tests that have been done so far, they'll decide to go ahead with the surgery . . . but they emphasized that I shouldn't get my hopes up.)

I ranted a bit to one of the nurses -- she was Dad's nurse yesterday, but not today -- who nodded sympathetically and gave me a hug. I told everyone I was going downstairs to find the chapel. As I headed out the double locking ICU doors, today's nurse called out, "Susan! Wait! I want to talk to you!"

She followed me out into the hall and gave me a vigorous pep talk: reminded me that Dad's spent his life beating the odds (he was given six months to live in 1976, after all), told me what remarkable shape he's in given his age and condition. "He's the only patient his age I've ever had who doesn't have sundowners," the syndrome where elderly people become confused in the afternoon and evening. She told me what a "wonderful, smart" man he is, and how everyone in the unit goes into his room to get his views on political and economic events, and how proud he is of me and my sister. "I told him he should write a book, because he's had such an amazing life. I adore your Dad."

I adore my Dad too. I want him to be around for as long as possible.

She also ventured the opinion that "there are too many cooks in this kitchen." We're dealing with the cardiac team, the ICU team, and the San Francisco team, and they all have different opinions about what's appropriate. For instance, the doctors I talked to today said they hope to fly him out tomorrow, but other people on the medical staff believe that he shouldn't fly while he's on a dopamine IV, which is raising his blood pressure to a normal range. So we're definitely waiting for an ICU bed in San Francisco, but we may also be waiting for Dad to get off the dopamine drip, which so far hasn't been possible, because when they try it, his BP plummets again.

I appreciated the nurse's efforts to comfort me, but I still went to find the chapel. It's a pretty chapel, very small. The chaplain's office was dark and locked. I tried to pray, got distracted by noises from the hall, went back upstairs, and calmed myself with knitting.

Then I drove Fran home, and Gary and I went out for a decadent anniversary meal. I'm afraid I wasn't very good company tonight, either in the hospital or in the restaurant.

So, anyway, we're still in limbo. I don't know if he's going or when he's going. All I know is that if he goes, less will happen there than originally planned.


  1. Anonymous4:52 AM

    Dear Susan,

    So sorry to hear you've had such a shock. Too far away to know what to hope for on your behalf, but whatever you are hoping for I hope that for you.

    Very warm wishes,


  2. Susan,
    When Mom was in the hospital, they wanted to transfer her to a nursing home but couldn't, time after time, because she'd get a fever. I know how horrible and absolutely wearing this limbo is.

    And I know you KNOW this, but I want to be sure you FEEL this -- ratchet down on your need to fix and solve and be sure you take time to enJOY him -- healthy him, sick him, him in the hospital. And I shouldn't preach to the chaplain, but remember that joyful isn't always the same as happy.

    Stay strong. I'm praying for you both.

  3. Susan, I loved hearing this response from the nurse about your dad. Your other readers probably feel the same. Is there any chance you could get your dad to have a say on your blog?

    Peace! & Hope!

  4. Susan, my thoughts are with you, your dad and the reset of the family. If you need anything don't be afraid to give me a call or send an email.


  5. I know what it is to feel sucker-punched by medical news. I am so sorry. This is genuinely hard. Prayers continuing. And give your Dad an extra hug or kiss for me. I'm sure all your readers would say the same, so you may have to hug or kiss him a lot.

  6. Beloved, did you come looking for me? I have been out of touch, but I've noted this going on.

    Susan, first, you and your family are - have been - in my prayers.

    Second, I also know just how hard it is to apply what we know intellectually to our own guts. When my father-in-law coded, with me at the bedside, and staff asked, "Is there something you'd like us to do," I also focused on the "to do" thought instead of remembering my father-in-law's wishes. Another staff person did remember and remind me and other family, and we acted appropriately. But in that moment I was also lost in my emotions, my fear of loss, my desire to control what I couldn't.

    St. Benedict called on the monk to think about his own death, not to inculcate morbidity, but to give perspective and to bring focus on this moment. It's just so much easier to consider my own death in abstract, and even as a real possibility, than to consider the death of someone I'd rather not lose. I trust you will gain some perspective - not some abstract objectivity that separates you from your father, but enough distance to be with him and love him in the moment.

    So, let me remind you of what you already know: you have today with your father. Until the Kingdom comes, all we really have anyway is today. And if the Kingdom does come, we'll have many other things to occupy us.


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