Wednesday, April 4, 2012

I write because….

I write because I hope that somewhere along the way I will be able to help someone – someone who may be newly diagnosed with having the dastardly disease or someone with the dastardly disease and is having a not so good day. Either way, I will listen and encourage that sharing; to let them know others do understand.

Pulmonary hypertension is a rare life threatening disease of both the heart and lungs… no cure as yet but now several “therapies” are available and several are in trial – there is hope. Hope for a cure.

Each of us who have this disease is unique – no two of us seem to be the same. Some may have it secondary to another disease some they may have not found out why but deep down there will be a why. There always is. Some of us are on multiple therapies - some on only one. Unique???

Many doctors are doing research, not only to find a cure but also the why and what can be used to slow or stop the progression. Did I mention it is also a progressive disease? Well it is.

With the therapies that are out there now, this disease is very doable. The key is to being properly diagnosed. Too many times it is mis-diagnosed; symptoms mimic heart problems other lung issues such as asthma – and several others. Then there are some of those doctors who will say “it’s mild, not to worry”. Well, dah, it’s a progressive disease – very doable but it is progressive and if it can be treated at the mild stage it will just take that much longer for the progression to progress. Makes sense to me.

Being a Support Group leader I receive calls from pholks, usually newly diagnosed who are scared and I can’t blame them. Again, I mention with the treatments/therapies available, it is very doable. You will have a new normal but you can do many things you did before – many are able to go back to work, some have to readjust their lives. Remember doable.

We are never guaranteed an easy life and as in climbing a mountain, sometimes we have to go down in order to reach the top. Life can be a challenge but also a joy. We need to focus on those joyous moments.

Remember to smile – it is contagious.

1 comment:

Colleen said...

You do so much for the PH community, my phriend!! I know so many people are thankful for all of your help, including myself! (((HUGS)))