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This Is A Long Question, Not Brief. I Am So Confused After Establishing RA Care. Should I Trust My Hospital DX Of PH? He Says No.

A myPHteam Member asked a question πŸ’­
Las Vegas, NV

I was hospitalized for status asthmaticus with influenza A last month (yes I am vaccinated). During this time, I had Cardiac work up as well. I was diagnosed with Mitral Stenosis after echocardiogram and saw Cardiologist is hospital and diagnosed with Pulmonary hypertension and saw Pulmonologist in hospital. I was given typical out comes of each disease and much worse typical out come of the two together. It felt very official and it is in my medial history now. My Primary physician took… read more

January 16, 2024
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A myPHteam Member

The Echo is a pretty good Dx for PH but a Cardiac Catheterization would be a more direct diagnosis so I agree that you should see a pulmonologist along with the cardiologist.

March 21, 2024 (edited)
A myPHteam Member

Somebody should have done a 2D Echogram, drawn a BNP, and a Rt sided heart Cath if the 2D was abnormal. A chest CT might show cardiac enlargement but can't confirm PH

January 24, 2024
A myPHteam Member

Hi Debi, Looks like you have a lot on your plate right now. Is there any chance you can get a second opinion on the newest developments? Like at a Mayo Clinic or some other professional means. My heart goes out to you and I didn't care for the "Just wait and see" comment. What would you be waiting for? Please let me know your progress. I know you have to be real concerned and that is understandable. Hang in there!πŸ™πŸ»

January 19, 2024
A myPHteam Member

The gold standard for diagnosing PH or more specifically PAH is a right heart cath. There are 5 types of PH, each with different causes and very different treatment options. You have a right to be concerned but you need a more definitive diagnosis.

I would say the majority of us are scared when we first hear we have PH/PAH. The long-term prognosis statistics are grim. However, you must keep in mind that those statistics are based on past numbers. PH is being diagnosed much earlier. There are lots of medical studies in progress and lots of new medications in clinical trials. Don't focus on the statistics. They will change over time.

I was diagnosed with aPAH in 2022. It is caused by an autoimmune disease. I am currently on 2 medications, Tadalafil and Ambrisentan. I had a second RHC last September. My pulmonary pressure dropped from 36 to 17 in approximately a year. I don't feel 100% and probably never will but I feel so much better than I did. I've learned to take things one day at a time, focusing on the blessings in my life rather than the endpoint.

January 19, 2024
A myPHteam Member

It can be challenging to navigate conflicting medical opinions. Trusting your diagnosis is crucial. Here are some steps to consider:

- Trust Your Instincts: If something doesn't seem right, trust your gut and seek further answers
- Seek a Second Opinion: It's okay to get another medical opinion to confirm your diagnosis. Show Full Answer

It can be challenging to navigate conflicting medical opinions. Trusting your diagnosis is crucial. Here are some steps to consider:

- Trust Your Instincts: If something doesn't seem right, trust your gut and seek further answers.
- Seek a Second Opinion: It's okay to get another medical opinion to confirm your diagnosis.
- Engage with Support Groups: Many find comfort and additional information from communities like myPHteam.

Remember, your health and peace of mind are paramount.

July 14, 2024

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