1. < Heart & Blood Health

Pulmonary Hypertension

Posted by Mary D @maryd, May 26, 2018

I'm wondering if anyone has been diagnosed with pulmonary hypertension and would share what type it is, the symptoms they had, and their journey to a diagnosis. The more I read about it, the more I am convinced that I have it but the doctor's just keep repeating echos and telling me they are normal. They will not move on to an invasive test like a right heart cath but from what I've read, that might be the only accurate way to diagnose it.

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lioness | @lioness | Jun 19, 2018
In reply to @kanaazpereira "Hi @maryd, I merged your post about finding others with chronic myocarditis into this previous discussion..." + (show)
@kanaazpereira

Hi @maryd,

I merged your post about finding others with chronic myocarditis into this previous discussion that you started, so that you could reconnect with the members who've shared their insights.

According to this information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/myocarditis/diagnosis-treatment/drc-20352544:
"In many cases, myocarditis improves on its own or with treatment, leading to a complete recovery. In mild cases, persons should avoid competitive sports for at least three to six months. Rest and medication to help your body fight off the infection causing myocarditis might be all you need. Although antiviral medications are available, they haven't proved effective in the treatment of most cases of myocarditis."

The best test for diagnosing myocarditis is cardiac catheterization and endomyocardial biopsy. A small tube (catheter) is inserted into a vein in your leg or neck and threaded into your heart.A special instrument tis used to remove a tiny sample of heart muscle tissue (biopsy) for analysis in the lab to check for inflammation or infection.

@maryd, have you taken your concerns to a cardiologist?

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@maryd glad to hear that your open in trying it let me know what you think

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cognac | @cognac | Jun 28, 2018
In reply to @kanaazpereira "Hi @maryd, I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them..." + (show)
@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

Jump to this post

Hello Maryd, I'm sorry I'm so late in replying to your kind comments/questions from Jun 15 and Jun 19. Thank you for sharing such incredible information. I have dr.'s appts. tomorrow - one of which is pure testing. I have no idea what they will be doing. I agree there is a "bully-type" attitude especially in teaching facilities. To answer your questions, I have no idea what my "saturation" was when I started oxygen at night. And I was so new to everything, I didn't even know to ask. The doctor said do it, so I did. That was at the first doctor's office. I've learned a lot since then. I feel the Azathioprine and Dapsone are helping. (Or maybe it's just psychological?) I have not had an invasive heart cath, but the fifth or sixth doctor did do a sonogram which showed nothing irregular. And, yes, weather DOES affect me. Cold, dry Winter days when the dew point is around 25 are awful. But I hate heat so much that I,too, am miserable on 95-100 degree days with high humidity. I truly wish you luck in your search. Please stay in touch and let me know how you're doing. Take care, Cognac

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ebellag | @ebellag | Jul 8, 2018
In reply to @bjanderson "My echo indicated pulmonary hypertension. Underwent a right heart catch, with a sedative, and was told..." + (show)
@bjanderson

My echo indicated pulmonary hypertension. Underwent a right heart catch, with a sedative, and was told my pressures were just fine. Well, Mayo thinks it was the sedative that reduced the pressures. I have no symptoms but mine is caused by heart failure and a severely leaking tricuspid valve.

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Tricuspid leaking big couse of heart palpitations

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lioness | @lioness | Jul 8, 2018
In reply to @kanaazpereira "Hi @maryd, I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them..." + (show)
@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

Jump to this post

@myriad I dont have PH but had a by pass surgery before had heart catheterization never did I have any pain with it like you said I'm so sorry you had to endure this ,this is not right don't let the Drs bully you tell them no I I want you to see me .By law I think a student has to be attended by a Dr not left alone ,so sorry for you

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 8, 2018
In reply to @bjanderson "My echo indicated pulmonary hypertension. Underwent a right heart catch, with a sedative, and was told..." + (show)
@bjanderson

My echo indicated pulmonary hypertension. Underwent a right heart catch, with a sedative, and was told my pressures were just fine. Well, Mayo thinks it was the sedative that reduced the pressures. I have no symptoms but mine is caused by heart failure and a severely leaking tricuspid valve.

Jump to this post

Hello, @ebellag -- welcome to Mayo Clinic Connect. Sounds like you may have some experience with heart palpitations connected to triscuspid leakage? Wondering if you would share a bit of your experience?

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carnes | @carnes | Jul 8, 2018

I am 72 years old or will be next month. I have A Fib and today I had another cardiac event. My heart kept going soooo fast tachycardia for about 5 minutes this time. It is scary. My hypertension is not under control yet. I’m on cardevilol, Benacar, novas pravastatin and something else. Anyone have similar problems? Also have Lyme Disease COPD trouble very painful to walk or stand. Broken coccyx bone etc etc

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1 reply
lioness | @lioness | Jul 8, 2018
In reply to @carnes "I am 72 years old or will be next month. I have A Fib and today..." + (show)
@carnes

I am 72 years old or will be next month. I have A Fib and today I had another cardiac event. My heart kept going soooo fast tachycardia for about 5 minutes this time. It is scary. My hypertension is not under control yet. I’m on cardevilol, Benacar, novas pravastatin and something else. Anyone have similar problems? Also have Lyme Disease COPD trouble very painful to walk or stand. Broken coccyx bone etc etc

Jump to this post

@I'm so sorry to hear of all your problems See your Dr about your tachycardia

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carolkel | @carolkel | Jul 10, 2018
In reply to @kanaazpereira "Hi @maryd, I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them..." + (show)
@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

Jump to this post

Hello Maryd. I had a right heart cath done as well as others. The pulmonologist I was seeing about my PH said I had to have
a left heart cath or he couldn't help me. I am squimish about the groin cath and have declined. So I am out in the cold.
What do you know about right heart vs left heart catheritization? One more thing. I agree that there is a kind of bully-type
attitude, "I am right and you don't know anything". This does not meet professional standards. nor patient-care conceerns.

REPLY
Charlie | @ca426 | Jul 10, 2018
In reply to @kanaazpereira "Hi @maryd, I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them..." + (show)
@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

Jump to this post

A right heart cath is the only way to verify PH, not sure what he's talking about...but the groin cath. is really no sweat.

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racerjon | @racerjon | Jul 11, 2018
In reply to @kanaazpereira "Hi @maryd, I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them..." + (show)
@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

Jump to this post

Hi Maryd. If you have a doctor that refuses to cath you while you are having all the problems after other tests, I'd find a new doctor.

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