Pulmonary Hypertension

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

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?

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.

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

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.

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.

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

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