Sunday, June 20, 2010

Critical Illness Myopathy Challenges the Caregiver's Reserve

After almost three weeks in the Inpatient Rehab Unit with aggressive Physical and Occupational Therapy, Steve has made progress, but it has been slow. His condition has been defined as "Critical Illness Myopathy/Polyneuropathy." Evidently, Critical Illness Myopathy/Polyneuropathy is a global and profound weakness of muscles and nerves which typically follows a prolonged ICU course and/or sepsis. The condition can lift over time. But it may take many months.

So, as we think ahead -- and as we have recently learned that none of the Skilled Nursing Homes that take Medicare will even accept Steve, we turn again to Home Care.

One of the Rehab staff asked me how it would be different to do Home Dialysis with Steve now, as opposed to before his lengthy hospitalization. The differences are obvious. Before, Steve could sit up by himself. He could walk. He could weigh himself, take his own blood pressure, and generally participate more in his care.

He's medically more stable now, with a vastly improved left ventricular ejection fraction of 45-50%. And, his brain looked normal on this week's head CT.

As long as the Kidney Center approves, we will resume Home Hemodialysis soon. This will mean five treatments a week - but no transportation to and from a Center. The transportation wouldn't be covered by Medicare anyway, and it would be enormously disruptive and uncomfortable for Steve.

We turn to Home Dialysis again, with the hope that it will buy us more time until this perplexing condition of Critical Illness Myopathy runs its course.

We are so grateful that he is alive, and mobility via wheelchair  would certainly work. We both just want him to live as well as he can.

So send good wishes for us in this new chapter. This is a road we haven't traveled before, and we welcome all the support we can find.

Take care. Linda Gromko, MD

4 comments:

  1. Linda, you & Steve are in my prayers. I hope he gets strong enough to overcome this latest challenge. But I really believe with all the love you have for him will male a huge difference.
    Take care.
    peace,
    DJ
    dee.jay1@comcast.ner

    ReplyDelete
  2. You are a courageous family and you are in my thoughts and prayers as you face this tremendous challenge.

    Miriam

    ReplyDelete
  3. Thank you, DJ and Miriam, for your kind remarks. We are fighting the good fight, and hoping for the best. Even this evening, I could see in Steve subtle changes for the better. But the deficits are enormous, and this hill is very steep. We're still in there! Linda

    ReplyDelete