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.

@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 as a suggestion ha V you looked into turmeric it's good for inflammation?

@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?

Jump to this post

Myocarditis can be caused by an autoimmune disease which are difficult to diagnose. I was finally diagnosed with sarcoidosis after developing both cardiac and pulmonary issues leading to a pacemaker and defibrillator. Nearly ten years later I was given a heart transplant at Mayo Phoenix. There isn't a quick fix for most of us …unless you have an acute cardiac crisis. I spent more time than I care to remember in doctor's offices in the interim. But I am grateful for the great care from the vast majority of my doctors. What finally convinced my mayo doctor that I needed a heart were the results of my pulmonary-cardiac exercise test which showed that my muscle groups were only getting 30% of the needed oxygen. I went through the transplant testing immediately. That test is not routinely given.
I wish you the very best.

@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 Cognac. I had my right heart cath last thursday. I was awake during the procedure and pedaling some bike pedals which had been secured to the end of the table. The catheter was inserted in the jugular vein in my neck. Pressures in the right side of the heart were measured while at rest, during exercise, and during recovery. I've been informed that the test results were normal. So I am back to square one in a quest for an answer to my symptoms. The insertion of the catheter was extremely painful and I felt an intense pain from the top of my shoulder all the way to the tips of my fingers. While the catheter was in place the doctor kept pushing on the area where it was inserted which also caused a great deal of pain. I still have pain in my neck 5 days later. I was told that an Attending cardiologist would do my procedure along with a "Cardiology Fellow". Well, I never saw the Attending. The "Fellow" or student did the procedure. It was an awful experience. i would caution others that are going to undergo an invasive procedure to demand an experienced Attending Physician who has done thousands of them. Teaching hospitals many times do not give you an option. There is a "bully-type" attitude that exists that has no place in medicine. I am still on the quest for an answer and I am looking into "chronic myocarditis" as a possible cause. I hope you are hanging in there and having more good days than bad. Does weather affect you? We have recently had 95-100 degree days with high humidity. I always feel much worse on those days.

Liked by cognac, lioness

@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?

Jump to this post

Thank you for your suggestion. I have read that tumeric is good for inflammation. I think I'm going to try it.

@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?

Jump to this post

Hello estrada53. I'm sorry you have had to go thru so much. It sounds like you had wonderful doctors. How are you doing now? Do you still see doctors at the Mayo in Arizona? You mentioned receiving the cardio-pulmonary stress test. I had that test done a couple of weeks ago and I was told it was normal with the exception of exercise induced hypertension. I think when symptoms are more severe, doctors can identify the problem easier. When symptoms are milder and don't immediately fit into the box of a specific diagnosis, doctors seem to give up. I'll keep pursuing an answer. I'm sure there is a doctor out there that can help me. Thank you for sharing your story. I hope you continue to do well. Take Good Care

@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?

Jump to this post

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

@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

@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

@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

@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?

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

@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

@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.

@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.

@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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