Where the Hell Did I Go?

It's been a long damned time since my last post.... because a lot has happened since, and it hasn't been good.

My father, who has sarcoidosis and pulmonary hypertension, collapsed at the end of February. The EMTs were able to stabilize and transport him to the hospital, but he will need care for the rest of his life. My mother, who has arthritis of the spine and diabetes, was unable to do this on her own.

Instead of them going to assisted care (more likely a nursing home for my father's needs), Gwen Mayo and I quit our jobs and moved to Tarpon Springs, Florida. Yes, we had a mortgage. Yes, we had years of payments left on the car we purchased in October of last year. Yes, we owe money for other stuff. But move we did. It beat leaving my mother alone and destitute after my father passes (I hope the latter will be delayed with our assistance).

We were fortunate to receive assistance, in the form of both cash and labor, from our coworkers and friends. My stepdaughter has taken over the house so the grandsons will have a place to live when they're ready for college (that day is approaching faster than I thought possible). Dad is out of the hospital and appears to be on the mend, albeit at reduced capability.

I hope to get some type of income soon. It will need to be part-time, at least during this stage of my father's recovery. Will I ever write again? Composing this blog, I hope, is a positive step.

Right now, all my brain wants to do is scream. Even after being here for three weeks.

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Pulmonary Hypertension: Update on My Father

Once again, it's Pulmonary Hypertension Blogging Awareness Day. If you read my post last year, you know that my father has this disorder.

Time for an update: Dad is using the oxygen tank more frequently. After a stretch of 'holding steady', he had a serious drop in heart/lung function this fall. He's been having trouble getting out of his chair, being lightheaded when he stands, and having to rest/nap after even mild exertion.

As far as I can tell, he has gone from Class 2 to Class 3 pulmonary hypertension. This is not a good thing. The doctor has been trying Revatio with him. Never heard of it? Yes, you have... its other name is Viagra. Unfortunately, it has no fun 'side effects' for him.

Dad says that it's not working very well in other ways, either. He isn't as bad off as he was, but he's still not functioning well. The doc didn't think the Revatio would perform very well, but he wanted to see if it made a difference before moving on to stronger drugs - the sort with the FDA black box warning.

Now, my father is hoping to get onto Tracleer. It's strongly counterindicated for pregnant women (not an issue for a man in his seventies) and people with liver problems. In some cases, it can actually damage your liver. It is only doled out in 30-day allotments at a time by certified doctors and authorized pharmacies, and patients must have monthly liver function tests. Yes, that dangerous.

Oh, and expensive! It could easily cost him over $600 a month with health insurance. Or so he says. He also said 'a little under 14K a year', so I think he's lowballing for my sake. Meanwhile, he's taking 2 Revatio a day instead of 3 so he won't have to buy more before he sees the doctor about the Tracleer.

Since this is a degenerative condition with no cure, eventually Tracleer will not be effective either. The next step will be continuous subcutaneous or intravenous medication with a pump.

It's a sad decline to watch. On the other hand, I have been blessed to have him for this long. It's been five years since his diagnosis. By this time, half the people diagnosed with PH are already dead.

To learn more about Pulmonary Hypertension, click here.