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Patient story

Barbara ThompsonBarbara Thompson

The main thing that we all have in common is being misdiagnosed for so long and the lack of awareness of the symptoms of PH, Pulmonary Hypertension. Had I known them, maybe I or my husband would have put the two and two together & I would not have been bedridden for so long. Prior to my diagnosis, Chuck took me to 14 different doctors, I had 3 hospital stays & many trips to the ER.

I went to my doctor's office a lot because of the bronchitis that just would not go away. I even went once with my feet and ankles being so swollen that I couldn't put on my shoes. My primary care physician is with the University of TN Medical Group. I thought that if I were with a group of new doctors, they would be more up-to-date on "newer or rare" diseases.

Since I have so many illnesses and am on so many medications, I stomped my foot to see the same doctor on every visit so that he would be familiar with my case. Finally, December 9, 2002, he ordered an Echocardiogram to make sure I did not have a fluid buildup around my heart. Well, he called me on the 12th to let me know I had PH. It went right over my head. Since I had never heard of it, it couldn't be too serious. I had asked him about a lap-band or having a gastro-bypass and he said let's get a handle on the PH then worry about the weight. The shortness of breath, the heaviness of my chest, the swollen ankles, the extreme fatigue, hoarseness and lightheadedness were all attributed to my weight, asthma & ulcerative colitis. I also have Lupus Anticoagulant that caused three strokes in 1991 at the ripe old age of 37.

Barbara Thompson with I went to a PH specialist in Nashville. He said that he did not think that I had PH although the cardio who did the right heart cath said I had mild PH. My PCP was not convinced so he sent me to a local pulmonologist who sent me to another cardiologist for a right & left heart catheterization. Turns out that my pressure level had increased since no treatment was started earlier. It went from 24 in Feb. to 31 by May. (normal is 7-12) I was in Class IV meaning that I had the inability to carry out any physical activity without symptoms & the right side of my heart was enlarged. Dyspnea, (shortness of breath) and/or extreme fatigue were always present even at rest. Discomfort was increased by any physical activity.. I began treatment with Tracleer in June of 2003.

Barbara ThompsonI'm now 54 and really miss working with my husband, Chuck, our daughter and son in our family-owned wedding business. I have been unable to participate in the weddings since 2001 due to this disease. It took over two years for the PH to be diagnosed. I wondered for the longest why God would take the weddings, my girls - the brides - and working with Chuck every day from me since I loved it all so much. I know now that it is to make people aware of pulmonary hypertension & its symptoms.

The sad part is that this disease is easily diagnosed with an echocardiogram if only the physician knew about it! The problem is, many, (in our case 14 different ones), do not know about it. I do not blame anyone. If you don't know about a disease, you just don't know. This has GOT to change. The public AND THE DOCTORS must be educated about this insidious disease or at the very least be aware of it & its symptoms.

PH, high lung pressure, is in no way connected to the type of hypertension that is measured with the cuff on your arm. The only way to confirm PH is with a heart cath. I was originally dx'd with an echo. It estimated my PAP (pulmonary arterial pressure) at 78.

http://www.phassociation.org/Learn/What-is-PH/

http://www.phcentral.org/medical/whatisph.html

I've received a lot of knowledge & support from these groups. I've also started a PHA Support Group in Memphis, TN.

Barbara Thompson
A PHer

UPDATE--JULY 2009

I keep my eyes and ears open at all times, listening and looking for ways to do my part in spreading awareness. I put pamphlets, supplied by PHA, in all of the doctors’ offices I go to—complete with a label that has my email address and phone number in case someone wants more information.

Several months ago I was afforded a wonderful chance to reach even more people. I was a guest on a local talk show in Memphis, The Loretta McNary Show. I contacted Loretta via email and told her how important it is to get information on PH to the public. She agreed to have me and Dr. William Novick on her show, which aired on May 6, 2009. We even did a second show with her on July 30.

With the ease and availability of the internet, I posted the original show on YouTube, so it has been seen around the world. I’ve asked my PHriends to forward that link to their family and friends so that more can be educated.

Click here to watch the show.

This disease is easily diagnosed with an echocardiogram. The problem is that many physicians do not know about PH. I do not blame anyone. If you don't know about a disease, you just don't know. This has to change. The public and the doctors must be educated about this insidious disease.

 

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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.