PH Journeys: PHA's Patient and Caregiver Narratives

Hello Everyone, My husband has artieral pulmonary hypertension. His pressure levels right now are at between 78-88 they have gone lower about 5 pets since last year.   Well my question is if the number is high it's getting worse, that is my understanding? Am I right or wrong?   more
Posted by MDH2008 on PH Journeys Feb 23, 2017 2:15 PM CST
Amy Ford When were you diagnosed with pulmonary hypertension? I was diagnosed in 1986, but I was sick for a year before anyone realized what was going on. When was a transplant first raised as an option? At that time anyone with a dual diagnosis didn't qualify for transplant. I had lupus as well as PH, so my doctor told me that I wouldn't ... more
Posted by Community Admin on PH Journeys Apr 30, 2015 4:44 PM CDT
Dear PHriends, I just finished reading  Pathlight . Every article interested me because I too have PH and have had it for many years. I too have gone through the stages described by the wonderful PHriends who have thoughtfully written in the pages. I can’t help feeling as though I should be contributing somehow to all the great efforts that ... more
Posted by Community Admin on PH Journeys Apr 16, 2015 1:57 PM CDT
Hi, I'm Katy. I was married in October of 2003. I was diagnosed with PPH in November of 2003. This totally devastated me. I was ready to take on a new life with my husband and start a family, when that came to a halt. The hard part was telling my family. My in-laws—God love them—have been supportive and understanding. My family....well my ... more
Posted by Community Admin on PH Journeys Apr 16, 2015 1:55 PM CDT
In October of 2002, I went in for hernia surgery and had trouble waking up after surgery. Instead of staying for a day I ended up staying for a week. My oxygen saturations where in the 80's and no one could figure out why. They gave me physical therapy and inhalation therapy. I had trouble trying to walk I would get dizzy and weak. About four months later ... more
Posted by Community Admin on PH Journeys Apr 16, 2015 1:52 PM CDT
My name is Craig and I am 63 years old. I was officially diagnosed with PAH in September of 2010. In 2003, after 30 years in the fire service in South Florida, I began having a difficult time functioning in my turn-out gear. At first, I presumed I was just getting older and becoming out of shape. While on a fire alarm and in full gear, including my ... more
Posted by Community Admin on PH Journeys Apr 16, 2015 1:47 PM CDT
My Name is Patricia Boaz. When I was 9 1/2 yrs old my pediatrician heard two heart beats so he told my parents that he wanted to send me to a cardiologist. So the cardiologist put me in the hospital to do a cardiac catheterization, and they found that I have a hole in my heart. The doctor called it ventricular septal defect. I was limited on most physical ... more
Posted by Community Admin on PH Journeys Apr 16, 2015 1:46 PM CDT
When I first started getting short of breath and really tired, I thought I had just gained a little weight and I started to walk. I would be the only one out of breath and I mean out of breath! I felt like my heart was going to beat out of my chest. My head hurt and I felt dizzy. I thought. “Oh no, what the hell is going on?” So I made a doctor's ... more
Posted by Community Admin on PH Journeys Apr 16, 2015 1:42 PM CDT
Hello, I am honored that you chose to read about my journey with the disease of pulmonary hypertension. As you may already found out, it is a very complex disease and can be misdiagnosed; this happened to me. I was diagnosed with asthma for the last 15 years. Then I was diagnosed with severe sleep apnea. My problems really started a year ago. I had severe ... more
Posted by Community Admin on PH Journeys Apr 16, 2015 1:39 PM CDT
My name is Yolunda Barquet and I am a mother of one son who will soon be eighteen years old. I found out that I have PH in May of 2005. It has been a real struggle for me ever since I’ve had it. I also have pulmonary hemosiderosis, which is very uncommon, since the age of three. I’m not sure how I got PH, but I do know that it has really changed my life. ... more
Posted by Community Admin on PH Journeys Apr 16, 2015 1:39 PM CDT

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  • Living with the Romodulin pump. (Draft)
    Hello, this is my first entry so please bare with me. I'v been on the pump for 5 months now, I'm use to it being attached 24/7. But I'm curious about the painfull side effects, will they always be there? Also putting in a new site, is there any other place besides the stomach you can put it? Thank you, Kat more

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