Experience w/ pulmonary hypertension?
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Anonymous
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I have a good friend who has PH. As of about a month ago, she now has to be on oxygen 24/7. She and her husband have a 4-year-old daughter and my heart is just aching for them.
Vast strides have been made with regard to PH management and prognosis in the last 20 years, and as such, a lot of the research is outdated. Just curious if anyone out there has any experience with this disease. I'm so afraid for my friend and her family, yet she remains hopeful. Apparently there are new drugs that can actually reverse progression of the disease. Seems like a long shot to me since it causes heart damage. Have you had a loved one with this disease? What can I do to help her and her family cope? |
Anonymous
| I'm so sorry to hear that--it's a tough disease. I actually know someone who works at the Pulmonary Hypertension Association (PHA), and she says that it's really important to be treated by someone who specializes in PH, not just a pulmonologist. phassociation.org might have more information for you. |
Anonymous
| Also, PHA has support groups and events in DC and throughout the country. They're also pushing Congress to fund more PH research, and you can find information on that on their website if you want to get involved. |
Anonymous
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OP here. Thanks PP. I get emails from PHA and have donated. I would like to volunteer but unfortunately all of their local volunteer opportunities are in Silver Spring around 6-7pm. It would be nearly impossible for me to get over there after work on any sort of regular basis (I'm in the VA burbs).
I haven't been on their website in awhile but am going to check it out right now to see if there are updated opportunities to help. Thanks! |
Anonymous
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PP here. I think that a lot of the typical helpful things for someone who's sick apply--bringing food, watching kids, and taking her to appointments when her DH can't. If she's up for it, arranging outings together that she can do with oxygen, maybe in a wheelchair, like the zoo or museaums. Many PH patients get out of breath very quickly from walking, but do ok if someone pushes their wheelchair.
PHA has a big push to raise awareness since it's a rare disease where early diagonsis is essential--it can be something as simple as posting on facebook about PH. Look for the "Sometimes It's PH" thing on their website for ideas. I'm sure your friend appreciates your thoughtfulness! |
Anonymous
| Yes, I have a good friend too. How old is your friend? It is not common in young people. My friend goes to Johns Hopkins, but does not live in the DC Metro area. |
Anonymous
She was diagnosed in her 30's and is 40 now. She lives in the DC metro area. It sucks. Is your friend young as well? |
Anonymous
My friend is young too. We were in our late '30's when we found out. Now we are in our early '40's. My friend is doing better than yours -- I suspect this is pure luck. It does suck. |
Anonymous
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OP here. PP, is there anything you have done for your friend that has really helped her out?
My friend and I did some easy, at-her-pace hiking over the summer, so I am surprised at this sudden downturn. However, she likes to down play her illness so maybe it was already worse than I thought. |
Anonymous
| We haven't done much differently at this point. My friend has plowed forward with strong determination and at times this can be frustrating as I worry they are doing too much and pushing too hard. |
Anonymous
| Does she see a physician at a major pulmonary hypertension center? I used to share office space with the pulmonary hypertension team at Hopkins and it was an amazing program. This is definitely a condition that you want to travel to a premier program for. |
Anonymous
| 9:37 here -- my friend does go to Hopkins. And yes, you are right, they are amazing. |