Thomas Jackson9 said:I’ve been dealing with pulmonary hypertension myself for about a year now, though in my case, it isn't the primary type; it actually developed as a secondary complication stemming from some heart issues I've been managing... I'd love to hear what everyone else's experiences have been like with this condition.😕I must admit, I'm feeling quite a bit of confusion regarding all of this—I find myself wondering, what kind of pulmonary pressure readings are you all seeing, and what sort of treatment protocols are you following? Also, how are you all holding up and coping with these freezing cold days we've been having lately?🤷
Dear Thomas Jackson9. I only just "discovered" you on this forum today. It’s good to be able to exchange experiences and thoughts; it’s how we help one another. I've been dealing with PH longer, though intensive treatment only started about three years ago at the medical center in Washington, D.C. In my case, they say the PH is a consequence of Rheumatoid Arthritis that affected my lungs. When the pulmonary pressure was first diagnosed, the issue was neglected and ignored due to a lack of information from my rheumatologist at the time. Only after years of rising pressure and fatigue limiting my quality of life did I end up at the clinic in Washington, D.C., where Professor Samaržija and his team specialize in successfully treating pulmonary hypertension. At the start of my treatment, my pressure was 115, and now it’s around 70. I was on Pfizer (100mg) for three years, but lately, it hasn't been enough. Since I am under thorough supervision there following a recent hospitalization and extensive heart and lung exams, they added a new medication called Ventavis, which I take via an inhaler. I feel better now. The chest pains are gone, and my physical endurance has improved. This doesn't mean the disease is gone—unfortunately, it is incurable. Therapies only slow down the progression, which eventually turns bad. But it isn't all grim if you are treated correctly and if the patient takes managing it seriously. I'd also like to take this opportunity to suggest something, as it seems this page is being read. If a medical professional happens to "stumble" upon this forum, it would be incredibly helpful if they could write something about this diagnosis. Many doctors don't have enough experience or knowledge regarding this difficult, sneaky disease. It is often misidentified and treated incorrectly, leading to significant, irreversible damage. It would be wonderful if someone qualified could take the time to tell people how to recognize the disease, who to see, which tests to run, and much more. This would be vital for patients who haven't found the right treatment path yet. I say this from personal experience; my own journey toward a final diagnosis and proper care caused irreparable harm. I hope some "good doctor" reads this and finds the time and willingness to join us here. Thank you in advance. Until then, dear Thomas Jackson9 and all my fellow "comrades" fighting pulmonary hypertension... know your enemy to defeat him more easily. Best wishes, and plenty of oxygen to your lungs.😂
