Tuesday, May 11, 2010

This is Not a Happy Face

I've tried to stay upbeat during all of this crisis with Alex's health. Really, I've tried. But I've reached the point where I need to vent a little. So if you don't feel like listening to me gripe, I'll understand if you click away from this post.


All along, our surgeon here has made it sound like Alex could go back to a pretty normal life after the surgeries and the sepsis. And lately, we've been finding out just how wrong he is. Alex was told by the surgeon in Cleveland that he needs to find another line of work. That's right; because even after the reversal surgery, he will always be at risk for herniation, he needs to reduce his lifting tasks as much as possible. The surgeon in Cleveland said that Alex's internal organs are adhering to themselves, to each other, and to the abdominal wall. That makes future surgeries difficult and dangerous, and the function of these organs will be negatively affected by the adhesion.

So, lifting restrictions also limits the other kinds of work he might be able to do. And it makes it damn hard to garden and kayak without some major re-thinking about the work flow and ergonomics. (Can any of you who know Alex imagine him just standing and pointing to where he wants a shrub planted? Not likely, is it?) It's looking more and more like the studio won't be in full swing again. (But in the meanwhile WE HAVE LOTS OF POTS that were made before the surgeries, and we're hoping to sell them all this summer.)


And the sepsis has trashed his internal organs. He's now on heart meds and has sleep apnea; we have no idea what other medical "surprises" may yet rear their ugly heads. People don't usually survive the level of septic toxicity Alex endured; it goes without saying that he would not come out unscathed. And yet the hospital did not prepare us for this, nor did they recommend any follow-up, any tests, any ANYTHING to measure the level of damage done. Does that seem right to you? To leave someone to get nasty, scary surprises about their own health?

We don't know if Alex will ever get to have a clay professorship. We don't know if he'll get to do all the things he loves. We don't know if he'll drop dead in 5 years because of all of this. I think a certain amount of anger in this situation is appropriate, but what I'm feeling today borders on disproportionate.

My boy deserves to be healthy. His health has been stolen from him. He deserves to finally be able to pursue a professorship, or any other thing he wants to do, without fear of inflicting more damage on himself. He deserves to not be afraid of, or angry at, his own body.

And I won't even talk about what it's done to us financially...well, ok, but just for a minute... I make too much money to qualify for some relief, and not enough to get us through this without having to liquidate our already meager assets. What the stock market crash didn't claim, this crisis will. Am I angry? What do you think?

Thank heavens for all of our amazing friends, family, and neighbors for chipping in, throwing a rockin' benefit for us, and helping us make our mortgage for the next several months. Thank you, all of you, for supporting us through this. I truly don't know how we would keep ourselves together without you all. Maybe it's because of the huge support we've had that I can finally admit to being angry, I can finally express it. And if you made it to the end of this, you're a true friend indeed. Thanks for letting me vent.

Ok, rant over.

7 comments:

  1. I'm really sorry that you are going through this! It's awful. You can vent my way anytime. By they way, your venting is far more mild than mine :-)

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  2. Nancy, I'm so sorry. You definitely have a right to be angry. Wishing you peace. Anna

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  3. Thanks, Karen and Anna. It helps to have some sympathetic ears available, it really does.

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  4. I'll say the same thing, you definitely have the right to be angry. I feel very sorry for how things have turned out, and I think you're right at saying the hospital should have better informed you. Unfortunately I know from experinece that more often than not they just give you the minimum information and leave you to find out the rest on your own. Not right, I think.

    I wish for things to get better for you both.

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  5. Of course you are entitled to any and all vents. If you remember I was cheering you both on so much and still so pleased that your Alex recovered - but OMG what he went through. I would imagine its almost like heavy duty chemo - and yes he deserves to know the outcome and he should have support from some medical team. Sounds like he is an anomoly so they might just be learning from him -- which sucks for both of you.

    Hugs to you both!!!

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  6. No shame in anger. And you certainly have reason to be. Love and prayers for you both that in a short time there will be some good news....a way to look forward to something positive. Keep on venting. It's a natural response, and a healthy one. You can't keep it in or it will eat you up.

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  7. Thank you, Cinquefoil, Joanne, and Kathryn. I really appreciate your support! It definitely helps to be able to vent in a supportive environment.

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