Back into the normal routine....

Well, after spending much of June on the road and in Michigan, I've had almost 2 full weeks of a normal home routine. I'm back to work and reasonably caught up with work.

Dad, who is in end-stage heart failure (meaning the "normal" cocktail of drugs is no longer working as well as it was), was in the hospital for just about all of June, plus the end of May and the start of July - which is why I trekked back and forth twice.

The first time, he was there for just over 3 weeks. He got out late on a Friday, we met with scads of home healthcare professionals over the weekend to learn how to manage all of his new gadgets (oxygen tanks and drug pumps). I lovingly (if not tediously) placed 3 week's worth of his newly adjusted meds into his jumbo pill-sorting things. All seemed to be stable.

He was home for 3 days. Then, went for 1 of several follow up appointments and landed back in cardiac icu. They apparently wanted to adjust a couple meds and he needed to be admitted in order to do it....and....as long as he was there, they decided to do some of the evaluation steps required to see if he is a candidate for an LVAD (left ventricular assist device.....which, for those of you who followed Grey's Anatomy, is what Denny had). Essentially, it's a mechanical pump that does the work of the left ventricle. There's also an RVAD (right ventricular assist device) and BIVAD (bi-ventricular assist device).....they seem to be used less frequently.

Historically, LVAD's have only been used in situations where a patient is on the transplant waiting list, but needed some pumping assistance in the interim....which got the devices termed "bridge to transplant".

Recently - like in the past 5 or so years - the devices have been approved for long-term or, as they say in the biz, "destination", therapy. Far as I was able to tell, only ONE device has been FDA-approved for destination therapy.

The truly amazing part is that advances are happening really quickly, with all sorts of improvements which ought to really make the devices viable options for end-stage patients. The hope is that improved survival rates with these devices will greatly ease the pressure on the transplant waiting lists because life expectancy rates between the artificial and human transplant options will increasingly become closer.

It was a really interesting process to grapple with, trying to compare having the device vs continuing treatment with an inotrope (primacor). I took the role of trying to get as much digestible information as possible so that Dad could make the best decision for himself. Trying to compare the two options was a bit like comparing apples and oranges - PLUS - there wasn't much information readily accessible regarding long term therapeutic use of primacor. All I was able to uncover is that it is clinically proven to shorten life expectancy, but its intent is to sustain quality.

Dad was really leaning away from the LVAD option, given the invasive installation process (basically, open-heart surgery), the likelihood of being on a respirator, having to have a drive-wire (ie., power cord) coming out of an open wound through his abdomen, etc.

As it turns out, there are some right-heart and lung (i.e., pulmonary pressure) issues which make Dad not a candidate for the LVAD. It makes sense to not install a left-side pump in someone when the right side won't be able to keep up.

I felt really sad when he wasn't eligible. I think it's because, even though he was leaning away from it, it was still an option....and now, it's one less option. He basically has only one option left...and that's the primacor. Dad felt totally peaceful with the "ruling" - and I get that, too - there is something really good about knowing what the deal is. The uncertainty was driving him (and us) crazy.

So, he's home. He's feeling good. He's still got a will and fight to live. His sense of humor is back in keen form - which is something that makes me so happy I could cry!

I hope to be able to write here more regularly....lots of fun stuff coming up in the next few months:

Woodstock Folk Festival on 7/20 (Mark Dvorak, Lou & Peter Berryman, Devil in a Woodpile, Jim Green, Martine Locke, Anna Stange, Twilight Hotel, Dennis Warner, Randall Williams . Check out www.woodstockfolkmusic.com (or see the link to the right) for more info.

Vacation in August! Can't wait for a week of solitude in the woods.....