Connect with others who understand.

sign up log in
Resources
About myPHteam

Connect with others who understand.

sign up log in
Resources
About myPHteam
Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is Anyone Diagnosed With Mild PAH And Going To A PH Clinic. I’ve Been Told They Wouldn’t Accept Me With Mild Disease.

Is Anyone Diagnosed With Mild PAH And Going To A PH Clinic. I’ve Been Told They Wouldn’t Accept Me With Mild Disease.

posted November 21
A myPHteam Member

Hi, Patricia. I am sure you are frustrated (to put it mildly). I have a wonderful pulmonologist. After several visits she decided to refer me to the INOVA Lung Care and Transplant Clinic. It is very well known and right outside DC. She said she would be sending them my case file for review. She explained that they held a weekly review of potential cases to determine who they could best help in their programs. I questioned why it would matter. She said that I should not worry. She knew one of the doctors very well and would connect with him and that no matter she would stick with my case to coordinate everything. I still questioned why a decision had to be made. Finally, she explained there were numerous requests and only so much program space. She also explained they treated patients, but also did research and worked with exploratory drugs.

They did accept me in the program, and I waited two months to get my first appointment. After spending the morning with various folks and the doctors, it was evident they liked my case because it was complicated. I have pulmonary fibrosis and pulmonary hypertension (both PH and PAH) and that is complicated by idiopathic cardiomyopathy.

They definitely made it feel like I was very fortunate. There are a handful of clinics around the country doing this work, And I do feel fortunate. They are the absolute best. I don't mean to ramble, but thought I would share my real life experience.

My best recommendation would be to get a good pulmonologist and see what contacts they may have. I am not sure I would have made it without my doctor. Best of luck to you. Sending up prayers.

posted November 21
A myPHteam Member

Thank you sooo much for the hug. I always enjoy seeing you on the site. Have w wonderful Thanksgiving & May God Bless 💕

posted November 22
A myPHteam Member

I had an Echo with a preasure of 90……( very high ), three months later….another Echo…..preasure elevated but had came down a great deal. So anyway ….I was placed on a second fluid pill a day. Bloodwork indicates heart is working hard. At this point & time…… it’s wait & see with me. Go back to PH doctor in 6 months……being closely followed by heart & lung doctors til then which I do appreicate ❤️

posted November 21
A myPHteam Member

I recommend ER and tell them youcan not breath! and be persistent. they will send you to a specialist, don't walk out of ER with out a specialist appt.

posted November 21
A myPHteam Member

That’s a foolish thing ever said I guess. You would surely be accepted and the treatment will be started right away. Why won’t a doctor love to have a patient be perfect as before with just the starting or first degree PAH and get Laurel for him/herself. Don’t just wait for anything and start visiting specialists and work on the problem. The faster the better.

posted November 21

Related content

View all
I've Been Told By My Lung Doctor That I Have Mild Ph. Is Mild Ph Anything To Worry About
A myPHteam Member asked a question 💭
What Did People Learn About Their PH At The Mayo Clinic That Was Not Clear To Them From Their Home Doctors
A myPHteam Member asked a question 💭
Do You Know What Type Of PH You Have And How Severe You Have It. How Did You Find Out?
A myPHteam Member asked a question 💭
Already a Member? Log in