PH Awareness Month - Post #25

I came across this fact sheet on what to do when you, your child, or someone you know and love are diagnosed with PH. It's a great sheet, and can be printed out if you go here. I'm just going to list the things they suggest! I wish they had this list when I was diagnosed in 1975, but really, no one hardly knew anything about PH as compared to today!

1. Obtain and maintain copies of all of your medical records in a binder.

2. Seek an evaluation at a Pulmonary Hypertension (PH) Center.

3. Read PHA’s 280-page book, Pulmonary Hypertension: A Patient’s Survival Guide.

4. Make a list of all of your medications.

5. Ask your doctor if a handicapped parking permit would help you.

6. Make a written list of all your questions and take notes when the doctors and nurses answer them.

7. Educate yourself about your health insurance plan.

8. Keep a written list of all of your doctors and their contact information.

9. Evaluate your financial situation.

10. Get education and support.

**Just a personal note about #5.....I felt so stupid asking my doctor to fill out part of the handicap permit application many years ago when I applied. I wasn't embarrassed to ask my doctor to fill it out. What bothered me was the fact I needed it at all, and that I was only 25(?) when I applied for it, and looked like nothing was wrong with me. I wasn't wearing oxygen at the time, so every time I pulled into a handicap parking spot, I was so self-concious of being in that spot. If someone was around before I got out, I would pretend I was busy with something in the car until I noticed they weren't there anymore, and then I could step out. It's still a feeling I struggle with, but not as much as when I first got the permit. I know that it's something I really NEED!! There have been times where I've needed to go to a store, and if there isn't a handicap spot available, I'll just leave and come back another time. Especially in the winter, or if I'm not feeling that great. A handicap permit is definitely something to consider if you feel the need for one!!

Comments

Nancy said…
When I was on oxygen, I had strangers ask me why I had parked so far from the door and why I didn't have a handicapped permit. I was touched by their concern, but I felt fortunate that I was able to walk with the help of my O2.
5:29 PM
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