OUR JOURNEYS

Patient story

Margret DeVine

Hi Everyone. My name is Margret and I am 28 years old and a mom to a wonderful 5 yr old son. I first started noticing a problem in February 2007. I was having a difficult time just getting from my car to my apartment without feeling like I had ran a 5K marathon. I just thought that I was out of shape and didn't think any more about it. Over the next couple of months I started noticing that when I bent over the lift something and then stood up, I had this intense pressure in my head and felt like I was going to pass out. I went to see my doctor and he said there was nothing wrong with me.

I didn't give it another thought until July. I actually passed out this time. I went to the ER and they first thought I had a seizure. So they did the first CT scan and found nothing, but the EKG was abnormal. They admitted me to the cardiac unit and ran all the tests from CTs and MRIs to Dopplers of the legs and neck. The doctors said they thought that I had Pulmonary Hypertension and were referring me to IU Hospital in Indianapolis for a consultation.

My appoint there wasn't for 6 weeks and I started noticing that it was getting a little harder to do everyday tasks. From that appointment we did a sleep study to see rule out that being a cause. It came back ok, so October 16th, I went for the RHC. My pressures came back at 85. I went to see Dr. Michael Ober, who is a wonderful doctor. We talked about different treatment options, and decided that since I am class III, that we would do the flolan IV therapy.

I met with the nurses from Accredo at my home and have been taught how to mix the medication and everything that goes along with it. I go Monday to have the PICC line put in my arm and start treatment.

I have had to stop and take time to take all of this in. It is not the best prognosis, but it was the one that I was given, and I have to make the best of it. I am willing to do whatever it takes at this point to be able to see my son grow up. I met a wonderful man in the process of all of this who is my rock and has been there with me through it all. My family has been a huge support, there's just a few times here and there that they don't understand why I feel the way I do sometimes.

I was told about the PH Association by Accredo and this is a wonderful website, with so many hopeful stories. I think the most important thing I have learned from my experience is that you have to have hope. Life is what you make of it, and I am going to make mine the best that I possibly can.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.