Do You Have PH And Hypertrophic Obstructive Cardiomyopathy (HOCM)

[Leilani block]

Thank you for the forum! I’ve been searching for an active online support forum/group for a while now. I got officially diagnosed by the Cleveland clinic in March of 2020 after years of doctors, symptoms, and being told it was only anxiety since I am so young. I now have an ICD/pacemaker device, (it’s part of a clinical trial, ask me about it!) But symptom management has been an ongoing struggle.

I now believe I may have PH as a concequence of my heart condition. (it’s very common! I did not know) as a lot of the symptoms I had attributed to HOCM that were not relieved with medication line up with PH pretty well. My doctor had not even considered it until I recently started monitoring my oxygen levels at home and seeing the fluctuations. I now have an appointment at a pulmonologists and I’m nervous/hopeful for starting the process in getting on suplimental oxygen.

Any advice or wise words are welcome. Thanks for reading.

[jen-cueva]

Hi @pastelart, I am sorry to hear about you dealing with not only HOCM but possibly PH, too. I do know that Cleveland Clinic has an excellent PH Center.

I would like to hear more about your ICD/pacemaker clinical trial. I hate that you continue to struggle with symptoms.

Your diagnosis of anxiety is not uncommon. I was told I had asthma, and no doctors believed my concerns or symptoms. It is frustrating, I know. I hate that you too, had to go through this.

Yes, PH is not uncommon with heart issues like HOCM. I hope that you are now on your way to get some more answers soon. I bet if you are teated for PH, maybe that will help you some with symptom management.

We are here to help support you as you go through this journey. You are not alone. This forum has some amazing supportive members.

Do you have any questions about PH specifically? When do you see the pulmonologist?