PH Journeys: PHA's Patient and Caregiver Narratives

Hi my name is Sarah.     I started having trouble catching my breath and chest pressure January 5, 2017 and went to the ER. They admitted me overnight gave me IV fluids and breathing treatments and because my oxygen level was good and my lungs were clear they sent me home sick.   On February 19, 2017 I had the same symptoms with chest pains, etc...and went back ... more
Posted by seschris on PH Journeys Jun 11, 2017 7:23 AM CDT
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

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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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