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Bad things do happen to good people. :<{


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Posted

Here's the promised update on Jan's condition:

Short version:

The cardiologist believes her condition is congenital, rather than part of a disease process, and all we have to do is monitor it through yearly "stress echocardiogram" tests. She should be around to outlive me, which is the natural order of things, after all.

Long version:

Jan has pulmonary hypertension (PH), which usually carries with it a median life expectancy of 2.8 years after diagnosis.

There are two types of PH that are disease conditions, primary PH and secondary PH. Secondary PH is caused by some other disease, such as sclerderma, trauma from drugs such as phen-fin, etc. Primary PH has no known cause, but may be genetic. There are only 300 cases diagnosed each year, making it a "one in a million" type of thing. That "median life expectancy" number is almost worthless; usually PH is not diagnosed until the disease is well advanced, and a number of drugs are working wonders with people who have the disease (they are still expensive, administered by an injection pump you wear on your belt, and have some nasty side effects for some people). But there are people who have lived 12 to 13 years, and are in better health today than they were when diagnosed.

So you can see why we were worried. In some cases, the PH is simply the way that person is built, and it never progresses. The doctor thinks that is the way it is for Jan. If so, that's a very good thing. If not, she'll have some progression in the disease in the next year, and we will at least know we caught it early. Another good thing.

Thank you all for your kind words, and the phone calls I got from some of you. I do appreciate it.


Posted

Craig,

That is indeed great news! May her recovery be swift and sure.

We are looking forward to being down there in your area this summer and meeting up with you folks.

Steve

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