OUR JOURNEYS

Patient story

Kim Presswood

"It took me over two years for doctors to take me seriously, as they would always say, "You’re too young to have health issues."

- Kim Presswood

Hello, my name is Kim Presswood. I was diagnosed initially with pulmonary hypertension in 2006, secondary to a whole in my heart (ASD). I had heard about pulmonary hypertension about decade prior, when I was taking the diet drug Phen Fen. It was taken off the market in 1997 due to having a high mortality rate from PH. I never worried about it, as I was young and healthy, until my first abnormal feeling with my heart beat. It took me over two years for doctors to take me seriously, as they would always say, "You’re too young to have health issues."

Kim Presswood

Finally while visiting my Mom in a different location, I was having weird pain in my heart, I went into the emergency room, and a very nice doctor did some tests and said that I had an abnormal EKG, enlarged heart, and a heart murmur, which I had never heard of before. She referred me to a cardiologist, and that is when they found the hole, and soon after they diagnosed me with pulmonary hypertension. I asked them if it was related to the diet drug and at that time they thought it would subside after my heart surgery to patch my hole. If it didn't we would go from there and see if that could be a cause. He said "time would tell if the problem was resolved."

On March 17, 2007 my ASD was patched up and after I recovered, I was back to my energized self. I was so happy and felt like I was given another chance at my life. At that point I decided I wanted to give back and become an R.N. so, within time I relocated closer to a college that I could get my R.N. Certification. About a year and a half after my ASD closure, I started to notice that I was getting fatigued once again. Then here comes the S.O.B (short of breath) then all the rest oh so common symptoms I knew about.

"... he just said nicely, "Oh good news, you just have pulmonary hypertension, nothing else." Of course my heart dropped, and I felt the urge to vomit. All the words came to my head, no cure, not much medication available, death within a short time, etc. Then, like I do, I researched, researched, researched. I wanted to know everything and anything. The only power or control I had in the situation, is education."

- Kim Presswood

After family pushing me to get back to the cardiologist, in April 2011, I found a primary care doctor, to refer me to the cardiologist in our new area. He had no knowledge of my past, and before he referred me, he decided to have a few tests run himself, and ordered an echocardiogram. I told him about being diagnosed in the past with pulmonary hypertension, and my symptoms felt the same. So when the results came back from the echocardiogram, he just said nicely, "Oh good news, you just have pulmonary hypertension, nothing else." Of course my heart dropped, and I felt the urge to vomit. All the words came to my head, no cure, not much medication available, death within a short time, etc. Then, like I do, I researched, researched, researched. I wanted to know everything and anything. The only power or control I had in the situation, is education. And that is exactly what I did, was educate myself.

I found PHA, which led me to much needed support, mostly from an online support group, Facebook PHFamily. It changed my life. Now I know I am not alone. I have wonderful friends that have come out of this. I also have learned who my true friends and family are. I have lost some, but have gained many true friends that know exactly what I am going through. I now have a PH specialist.

"One thing about PH is it brings everyone together for the same cause, and it makes me feel very good. I will do whatever I can to make someone feel better about what they are going through, or just be an ear, or shoulder to cry on."

- Kim Presswood

In November 2011, I did another RHC, but it was inconclusive to due to medical interactions. I am currently dealing with a major, on-going tooth and sinus infection. Doctors informed me that I am okay to get whatever treatment I need for the infections, and then deal with my PH. Until then, I am getting a lot of support. And giving a lot of support. I am so grateful for my husband and son, for the support they give me on an everyday basis. They both make sure I am never overdue for my medicine or stress too much.

One thing about PH is it brings everyone together for the same cause, and it makes me feel very good. I will do whatever I can to make someone feel better about what they are going through, or just be an ear, or shoulder to cry on, etc. And I thank all the hard work that the PH association has done. To know how far this association has come is very comforting and gives me much hope. Thank you for the opportunity to tell my journey, and as always I am open to helping anyone I can, as we are all in this together!

 

 

 

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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.