Patient story

Valerie Varn

In 2000 I became very ill, my chest hurt and I couldn't walk more than 2-3 steps without having to stop and catch my breath. If I breahed in deeply the pain was excruciating, so I was taking very shallow breaths. I didn't want to go to the doctor because I had just started a new job and I was worried that I might lose it if I was very sick, and I'm very stubborn. Well I finally went to the er, my O2 sats were in the high 60's, they took me in immediately! The doctors thought I was having an alergic reaction, then they thought maybe pneumonia, they didn't know what was wrong. They sent me to the general hospital [I was at a Military hospital] because they had the ability to do more testing on me...after 10 days in the hospital, several tests, a 2 1/2 hour ambulance ride to and from Madigan hospital in Tacoma WA they diagnosed me with a pulmonary embolism. I have Lupus and that is what they attributed the PE to.

I went back to work and everyone there was so kind to me, as a matter of fact I was not expecting a paycheck for those days I was out, but my boss submitted sick leave for me!

During my 10 day hospital stay a corpsman had a talk with me about my weight, I was up to 297 lbs and I'm only 5'3". He told me if I didn't get the weight off that I would be back in the hospital with other obesity related diseases. So I went on a strict diet and tried exercising, I would always get short of breath right away. I was told that this was due to the damage caused by the PE. I did lose 50 pounds...but within a year I was back up to 279 lbs, I was struggling with my weight more than ever and I had that fear of not being around for my children!

I seriously began researching Weight Loss Surgery, it was my only solution, I had done all the other diets and nothing lasted. In June of 2002 I had Weight Loss Surgery, my doctor didn't want to do the extensive by-pass surgery because of my health issues so he talked me into the banding instead, and I was very pleased with the decision.

With the banding weight loss is slower, but within 1 1/2 years I had succesfuly lost over 100 pounds. It took me so long because I really couldn't exercise. The shortness of breath was getting worse than ever. I do know that if I hadn't had this surgery I probably would not be here now.

In the summer of 2004 my girlfriend and I joined a softball team. Half way to first base I would want to just collapse because I had no oxygen! I couldn't even pitch a ball without getting winded!! I went to the doc and they attributed it to my anemia and put me on iron. I eventually had to quit the team and so did my friend because she got pregnant. I swore that I had sympathy symptoms with my friend, weight gain [about 50 lbs], fatigue, etc.

One day at work I literally saw my abdomen getting larger, I had to unbotton my pants it was so bad. I decided to go on line and look up my symptoms and I appeared to have the symptoms of Right Heart Failure...this scared me so I called the insurance nurse line. She told me to hang up and call 911 and get to a hospital immediately!! Stubborn me, I worked my shift, drove home and then went to the hospital with a printout of what I found on line. The check in nurses weren't impressed. But due to my O2 sats being low they checked me in right away.

The on call doc came in, he was rather upset because he wrecked his truck into the security post while coming on base because of me!! I heard about it from him...his bedside manners leave a lot to be desired. And he complained because I came in in the evening...

Well after several tests and not finding anything wrong with me this on call doc told me to lose the weight I had gained since having my Weight Loss Surgery, and that I just needed to exercise to get my body used to exertion. I explained to him that I literally couldn't exercise and he suggested I take in 600 calories a day by only eating salads and to just sit on the couch and the weight would come off...and he said "after all, isn't that why you had that surgery"...I asked him what about proteins, I just can't eat salads...and he replied "there you go, talking about food again"...thank God this Admiral is retired from the Navy now!

Very long story short and after many, many tests, during a follow up from my many tests my PCP heard a murmur and asked me how long I had it...I told him this is the first time I heard about it! He literally ran down the hall to my Intenal Medicine Doc and told her what he heard, and things started clicking from there. That afternoon I was at the general hospital having an ultrasound done of my heart, and it showed that I did have Right Heart Failure and edema.

Within the next week my Internal Medicine Doc [Dr. Ann Fox, she's the best!] had me see a cardiologist, a pulmonologist, etc. I finally had a RHC and was diagnosed with PH, and I responded well to the Flolan trial. I was put on Digoxin, and Lasiks and Oxygen until I could get approved for Flolan.

It took about 1 month to get insurance approval for the Flolan, but once I started on it things go soooo much better. I was able to breath again, and do every day chores. The only irony was the leg pain, here I was able to move about, but my legs were killing me! I was put on Neurontin and things got much better! Within 2-3 months I lost about 60 pounds and I was off of oxygen, which I hated being on.

I'm happy to be alive, I just have to slow down a little. Last year I took in my 3 nieces and nephew, I thought I could still be "Supermom" but I had to take them back to their grandparents because I just couldn't do it, it broke my heart, but I had to worry about my health.

Today I have been transitioned to Remodulin and it's working, but not as well as Flolan. I think I have to increase just a little bit more, I'm at 58 ng right now compared to 25 ng of Flolan.

I'm so thankful for my patient and caring husband, he jumped right in and learned how to do the mixing and how to care for my dressing. I am also grateful to the company I used to work for, they were awesome and they stood by me 100% during all of my appointments and hospital stays. I'm now working for a municipality and they have been equally understanding and accomodate my needs.

I don't know how much longer I can work, or for that matter how long I will live, I just know that I want to live life to the fullest. I want to see my children get married and have grandchildren. It's the small things that are important to me now, seeing my yard bloom in the spring, listening to my kids laugh, the warm touch of my husband's hand on my back, the smell of babies. The one thing I would love to see before I leave this world is a cure for PAH so that I know small children with this disease won't have to suffer any longer, and mom's and dad's that have PAH can enjoy playing with their children and grandchildren without losing their breath or getting dizzy. Wouldn't that be nice?


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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.