Saturday, August 9, 2008


A phriend posted a blog about an acquaintance asking her how she felt about dying and not too long after that a close friend also asked her how she was really feeling, implying about death and dying. She answered with a spiritual response and her true feelings as being one of God’s helpers. I truly believe she is a gift from God and as such, she has given strength to many.

I was first thinking what a dilemma she was in. Trying to answer someone she didn’t know well about death and dying and also with one of her better friends. My understanding of this disease, Pulmonary Hypertension, is that without treatment you have 2 to 5 years… With treatment no one knows how long you may live. I have met people who have been on treatment for 20 years and I have met some who were born with this disease and are still going strong and they are in their 30’s.

I’m not sure if you know but I am on the PHA Help Line and I receive many calls from newly diagnosed pholks who are outright scared because they have been told they are going to die. This is a scary disease and they have every right to be scared. I try to reassure them, that without treatment they may die within 2 to 5 years; but with treatment, who knows – and also we could walk out the door and be hit by a bus. We are all going to die, that is part of life. Two guaranteed things in life – taxes and death.

Yes, I believe we should get our “soul rights” in order but I am a firm believer that I have Pulmonary Hypertension and Pulmonary Hypertension does not have me.

Too many people do not understand this disease, too many people fall victim to this disease but it is treatable with the right doctors and we have to remember that. There is no cure but it is doable.

Over 2 years ago I became the Support Group Leader for the Cleveland Area PH Group and as part of my agenda for one of my first meetings I included: The late comedian Jack Benny was once honored with a distinguished humanitarian award. “I don’t really deserve this award,” Benny said in his acceptance speech, “but then I have arthritis, and I don’t deserve that either. Thank you very much.”

At another meeting I quoted: Lynn Redgrave speaking for Bristol-Myers-Squibb who said: I want to die from eating too much chocolate or from exhaustion dancing the tango. I want to die of laughter on my 87th birthday. But I refuse; I refuse to die from breast cancer. I want to die from something else. And that’s exactly how I feel about Pulmonary Hypertension.

So it’s not a question of whether we really deserve the things we get, like PH among others. The important question is this: how do we handle them? If we have grace, we can endure, and enjoy the unexpected ups and downs of life. Do I grumble about my health or am I grateful that I am alive. Should I cry because roses have thorns or should I rejoice because thorns have roses? Attitude and a good sense of humor will get you a long way with this disease but sometimes you may need a terrible crying towel. Some days you need to cry, to vent, and to let it all out.

Hugs to you all,