I have a progressive disease called Pulmonary Hypertension. The simplest explanation is this: The arteries and veins in the lungs become constricted, decreasing the oxygenated blood to my body, which in turn, causes my heart to work harder. No…it is NOT regular hypertension which a majority of people on this planet have but a more vicious entity which can lead to right side heart failure and death. There is no cure but there are 14 known treatments with many,many more in the research pipeline. The only “true” cure is a lung or heart/lung transplant and that is a different set of rules and steps which I will be following up with later.
The symptoms I experience are shortness of breath (SOB), fatigue, weight loss, increased heart rate (over 100 bpm resting), heart palpitations, decreased sleep plus edema . Not everyone will physically manifest these symptoms and this disease is often misdiagnosed as Asthma. It is not uncommon for patients to undergo years of misdiagnosis before getting a true answer as to why they feel so miserable. A Golden Glove Lightweight Champion boxer named Elvis Medrano “remembers going to more than 45 doctors and receiving almost as many misdiagnoses, from asthma to “it’s probably psychological.” (Jennings “Washington, D.C. Golden Glove Lightweight Champion Elvis Medrano Faces Biggest Battle with Deadly Lung Disease Diagnosis” 2018). It is KEY for anyone who is experiencing any of these symptoms to seek out a Pulmonary Hypertension Specialist (not just any Pulmonologist as not all Pulmonologists are educated or trained in this disease)! do not discount seeking out PH trained cardiologists as well! It is better to be over cautious and be tested and have you cleared of having PH than go through years of misdiagnosis, under-diagnosis, incorrect treatments and being miserable because you don’t have the right knowledge.
This disease knows no age, race, income level or career. Many are diagnosed, like me, with Idiopathic Pulmonary Arterial Hypertension. This diagnosis means the physicians do not know what caused the disease to “pick me”. Many have secondary Pulmonary Hypertension due to an existing Auto Immune problem such as Rheumatoid Arthritis, HIV, Lupus, Scleroderma and COPD. Many have PH from the weight loss drug combo called Phen/Fen from the early 90’s. Some have PH because of past heavy drug use (Cocaine, Meth, ICE, etc). Some patients are diagnosed with a form of PH called “chronic thromboembolic pulmonary hypertension (CTEPH). It happens when old blood clots in the lungs restrict blood flow and increase pressure in the arteries of the lungs.
The majority of us were healthy as horses before the diagnoses with none of the previous listed potential factors and behaviors present in our lives.
There are many places to get information on the web regarding this disease and many offer outdated information. The majority of information regarding this disease on websites such as WEBMD, are out of date, completely wrong or offer zero value to a newly diagnosed patient. I am hoping what I type here on my blog will help those newly diagnosed and veterans of this disease, adjust, absorb and find a bit of comfort as I tell my story. I will provide links to valuable and trustworthy PH resources within my articles so those newly diagnosed who find my writing of value, will have accurate information, support and hopefully gain a new sense of hope.
Newly Diagnosed? Please go here to get valuable information and resources to help you adjust to your new journey! DO NOT GIVE UP!! Pulmonary Hypertension Association
A big thank you to Brian, Jeri and Kathleen for inspiring me to write again!
Jennings, Jordan. “Washington, D.C. Golden Glove Lightweight Champion Elvis Medrano Faces Biggest Battle with Deadly Lung Disease Diagnosis.” Pulmonary Hypertension Association, 13 Mar. 2018, phassociation.org/washington-d-c-golden-glove-lightweight-champion-elvis-medrano-faces-biggest-battle-deadly-lung-disease-diagnosis/.
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