What is the best way to get the attention of PH doctors who do not have a sense of urgency in your case and how do you get them motivated???

What is the best way to get the attention of PH doctors who do not have a sense of urgency in your case and how do you get them motivated???

I was finay diagnosed with PH four months after it showed its ugly head when the pulseox would not go over 87 after rotator cuff surgery in October 2017. It was not actually diagnosed until I had a heart attack the end of January 2018 even though I had been on oxygen 100% of the time since October 5th. The first meeting with my pulmonologist he referred me to a specialist team… read more

A myPHteam Member said:

Wow. Your situation is exactly what is happening to me. I had a right n left heart Cath 6/02/2018 and my cardiologist officially diagnosed me with severe resting pulmonary arterial hypertension
Which is worse than his original diagnosis of pah. My follow up with him was over two month's from the heart cath. I go to the appointment n he he wasn't even present. His assistant was. Which whom I never met before. Anyways I ended up swelling up so bad I couldn't bend my knees and my legs started to bleed. I went to the e.r. which is the same hospital my cardiologist and my pulmonologist are located. The e.r. doctors and nurses were shocked at my conditions and started to ask questions why I was such a mess. So I opened up n told them what I thought about their specialists and why is there is no urgency in my conditions. I was first officially diagnosed with severe congestive heart failure back in April 2018, then diagnosed with cor pulmonar may 23rd 2018, nine days later pah. It took me to raise he'll in the e.r. to finally get the medical attention I need. I spent four day's in the hospital, lost 22 lbs in water retention. Now many new tests, appointments, new meds, a counselor, n much more. So far so good. I hope you are doing better as well. "PEOPLE DO NOT REALIZE" what we go thru. When I can't breath I panic, which makes it worse. I'm 49, n I'd like to live a little longer.

posted 10 months ago
A myPHteam Member said:

Ally, don't give up! Rest and go at it again. Just when you think there is no one out there that cares about you enough to find exactly what you need to be as well as you can be, you will stumble across them in the most unlikely of ways. Don't give up! Always have hope!

posted 9 months ago
A myPHteam Member said:

No Ally go to the ER and insist they do something. I became a very lucky person this week. My pulmonologist put cardiac issues as primary diagnosis and PH as secondary diagnosis. I had a follow up appointment with the cardiologist and he is taking on a challenge to get my heart doing better and getting me off oxygen. He said I should not be having the issues I am having. He is also having the cardiac team at Shands work on my case. That is where my cardiologist is at also. Yeah I finally have a doctor that is going to help me. That is the best Christmas present I could ever get. Oh Ally when I start feeling really down and out I listen to the Fight Song by Rachel Platten it helps get me back into the fight and I do have to remember there are many on this site including you who have it worse than I.

posted 9 months ago
A myPHteam Member said:

Jan both machines can have oxygen. Each machine helps differently. Hope you get better soon.

posted over 1 year ago
A myPHteam Member said:

Thank you I am just so tired 😌

posted 9 months ago
Browse more questions and answers
Continue with Facebook
Sign up with your email
Already a Member? Log in