Monday, November 17, 2008

Donna's Story

If you are a regular reader of my blog, by now you've seen the footer that I try to include on all of my November posts, the one that is a "public service announcement" about my condition, Pulmonary Hypertension.

While the entire month is PH awareness month, Tuesday, November 18th, is PH Awareness Day. So why the fuss about a rare condition that only affects about 100,000 people worldwide? Because the symptoms of PH (dizziness, shortness of breath, chest pains) can be attributed to multiple other conditions. Because by the time PH is diagnosed, the condition could have progressed to late stage. Because PH can be a secondary condition to other illnesses such as clotting disorders, Scleroderma, emphysema, bronchitis, and COPD. Because early diagnosis can prolong life. And because anyone, ANYONE can be diagnosed with this life-threatening, incurable condition. It cares not about race, financial condition, gender, or religion.

I try not to let the fact that I have a chronic condition affect how I live my daily life, but, as would be expected, changes have been made and certain precautions are taken on a daily basis.

Some things I bet you didn't know about living with Pulmonary Hypertension:

...that because of an enlarged right ventricle in my heart, I am unable to take decongestants for a cold. I am vulnerable to racing heart episodes

....that it takes me twenty minutes or more of relaxation time to recover from sorting the laundry. Bending over is very difficult for me because of the propensity to dizziness, and the "strain" of bending over repeatedly forces me to use more energy than I can expel easily. Then there's the whole lugging the laundry basket to the laundry room and actually picking it up (or bending over) to load the machine. Whew!

...that after a morning of standing over the copier machine in the school work room, I come home and lie in bed for a couple of hours to "recuperate."

...that I have difficulty walking up even the slightest incline. The front walkway to the school office slopes up ever so gently, but to me it might as well be a mountain

....that I use a shopping cart just to have something on which to lean sometimes. Just leaning on something can be helpful, which is why at times I have been known to use a cane. I'm considering getting a "rolling walker" as well

....that, although I have the legal right to park in a designated handicapped parking spot, it's not always the most convenient because it's not located right by the front door. Many times, the spot is located at the end of the walkway, because that's where the ramp is. The builders don't consider that all handicapped people don't use a mobility aid; sometimes proximity is more important than a ramp

....that many times I am not able to chaperon a field trip with my son because I can't handle all of the walking around. This makes me, and my son, very sad. But I always manage to make award ceremonies and help with homework.

...that the reason I have maid service is not because I'm lazy but because I'm physically unable to handle the housework for my 1800 square foot home.

....that whenever I travel all of my medications (a total of 12 different ones) need to be carried in a gallon Ziploc bag so that all prescriptions are visible through airport security. I also have to carry my CPAP (breathing machine) that treats my sleep apnea. You can see why I hate to fly, right?

...that even day trips away from home are managed so that I won't be too far from a rest room because of the diuretics ("water pills") I take.

...that I'm considered the "least sick" of those with my condition. In spite of these limitations, I still have an enormous amount of freedom. I don't use oxygen, I don't have a catheter for medicine, and the biggest thing of all - I'm NOT bedridden.

All in all, I'm still a very blessed individual.

**If you would like to read Donna's private blog, posted to the right in the blogroll, please email her at to ask permission!**


Nancy said...

Excellent post that is well written and contains a lot of information. Well done!

Annette Markin said...

Thank you so much for sharing, Donna. You've helped to open many minds and hearts with this blog.
a phriend