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Mary D
@maryd

Posts: 57
Joined: Jun 28, 2012

Pulmonary Hypertension

Posted by @maryd, Sat, May 26 12:10pm

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.

REPLY

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.

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.

@maryd Hi Mary. I have mild pulmonary hypertention, and it is due to my other lung issues that are much more serious. The doctor hasn't said anything more to me about it, except "We will keep an eye on it." I really can't help with this one, but if you are seeing drs at Mayo; I would think they are accurate in your diagnosis. Of course, if you feel in your gut that more is going on, by all means keep searching. That is how I found my answers. Best of luck to you, and let us know what you find out.

Liked by Jamie Olson, lioness

@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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Would you mind sharing what your symptoms are from the heart failure and leaky tricuspid valve? Also, what year was your Right heart cath performed? My doctor wants to do a right heart cath while awake and exercising on a bicycle. Maybe they realize they can not pick up pulmonary hypertension if patients are sedated.

@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

I had some slight shortness of breath when exercising and had seen a cardiologist for palpitations. He was keeping an eye on things but then, in 2015, I went into Afib. The Dr. in Florida told me I had a severely leaking tricuspid valve and needed surgery so off to Mayo I went.
I chose to further search to see what had caused the Afib. That is when they did the right heart cath. I was awake and they had me lift arm weights several times during the procedure. The Afib is my primary symptom and it is pretty constant. Controlling the rate is the choice of treatment for now. Considering an ablation.

@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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Hello and thank you for sharing your story. Did you have the tricuspid valve repaired or replaced at Mayo? Was the A-fib caused by the leaky tricuspid valve? You also mentioned heart failure. Are you still having symptoms of heart failure? If so, what are they?

@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

@bjanderson Good morning. Sorry to hear that you hae Afib. I know what it is like to have your heart race and be short of breath. I have SVT superventricular tachycardia. SVT is like Afib's little cousin. Mine used to bother me constantly. I was put on heart meds and that keeps it in check. I was facing possible ablasion also. A friend of mine who also had SVT did get the ablation done, and is very glad that she did. I understand that afib can be dangerous. It increases the likelihood of stroke. How long have you been on your meds for this?

@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

Hi @windwalker. I’ve been on Xarelto for 2 years. So far so good! Afib is not fun and am hoping the Cardizem and Metoprolol keep mine in check. Had a bothersome night last night. Could feel the Afib beats when trying to sleep. Ugh! Could be much worse, I know. I’d get the ablation ASAP if I knew it would work. What meds do you take?

@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

Hi. I have not had my valve replaced or repaired. Mayo doesn’t want to do it, at least not yet. I believe it is a pretty risky surgery. The Afib is a puzzle. Not sure if it’s the heart failure or the tricuspid valve that is causing it. Perhaps they both lend to the problem. However, my tricuspid valve was moderately leaking back in 2005 and my pulmonary pressures were elevated. Next problem, to occur, was the Afib in 2015. Went for 3 years with Afib under control with meds. It is the main symptom of my heart failure along with some shortness of breath.

I would have them do a right heart cath. If they still refuse, insist. This is one test that will almost certainly tell if you have PH. Stress tests and echos are good but not always the most reliable. I had a stress test done on a Tuesday that showed everything was fine. Two days later on Thursday a heart cath showed six blockages with three of them being stented.

@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.

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Hello maryd, have you had the right heart cath yet? What did the Dr. say? I have seen many (8 or 9) doctors due to shortness of breath. The third or fourth one said Idiopathic Lung Disease (ILD). I had an invasive lung biopsy that didn't show anything. So another Dr. in the group said it was probably Pulmonary Hypertension but referred me to yet another Dr. outside of the group. After two years, with three breathing tests each time and another biopsy going down my throat this time, he said it was caused by my autoimmune system and gave me Azathioprine to suppress my immune system, and Dapsone, a low impact antibiotic, to help prevent catching misc. illnesses like the flu, etc. I had two more doctors at the same facility within the next year and now I'm seeing another Dr. in another facility. After a little over a year and another MRI of my lungs, we're now back to ILD. So I don't know if I have pulmonary hypertension or not. I only know I sleep with oxygen. I'm constantly fatigued. I carry oxygen if I know I'll be on my feet a long time. I live alone but I have developed a method of pacing all my chores both inside and outside the house. I truly wish you luck. And, if you feel like it, I would appreciate hearing the results of the right heart cath. Take care. @cognac

@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 and thank you for sharing your story. I'm sorry you have had such a difficult journey in our search for an answer. Did the Azathioprine and the Dapsone help you to feel any better? Did they do a R heart cath to rule out pulmonary hypertension? I just had my R heart cath yesterday so I am awaiting results. How low were your oxygen saturations that you needed the oxygen at night? My oxygen drops after I do any form of exercise.

Hello. Can anyone share their story about symptoms of myocarditis and their path to diagnosis and treatment? I have been researching heart issues in a quest to find what is causing my shortness of breath, fatigue and inability to build exercise tolerance sine 2006. I recently discovered the Myocarditis Foundation online and realized that my symptoms and lack of answers on many tests fit the story of many people with myocarditis.

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?

Liked by 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?

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Hello. Yes, I have seen many cardiologists since the initial event in 2006. They are very dismissive with regard to myocarditis. Even at the Mayo Clinic. I was at Mayo for a complete cardio work-up in 2012. Recently went back to seek answers at Northwestern Medicine in Chicago and Rush. Both places act like my symptoms are a total mystery and my tests are negative except for exercise induced hypertension which is a new finding. This does not surprise me as I have been unable to build exercise tolerance since the event in 2006. That symptom alone seems consistent with chronic myocarditis. I was very disturbed to learn after my right heart cath last week that tissue could have been obtained to diagnose myocarditis. I did some research on the myocarditis foundation website and for the first time I think I may have found what might be the problem. Finding a knowledgable and competent doctor is essential and sadly, I have not had much luck in that area. With Myocarditis most cardiac tests are negative with the exception of non-specific EKG changes, which I have. Doctors need to listen to the patients symptoms and the history of when symptoms began but I have not found a doctor to do that yet. Myocarditis is not very common. That is probably why it is dismissed. Not sure. Although I would not wish this on anybody, I'm hoping someone can shed some light on this problem.

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