OUR JOURNEYS

Patient story

Ellen HarrisEllen Harris

In 1995, I was 38 years old and had become an aunt for the first time. I went to Boston on the train from Florida to meet my niece. I had packed a big suitcase for a week’s stay, and when I left the train at the Route 123 station, I discovered that due to renovation, I had to cross the tracks from the exit side to the street side by carrying my huge suitcase up a tall, steep flight of stairs and cross on an overhead bridge to the other side. This was a HUGE effort, and I was ashamed as I came down the stairs on the other side, because I was so out of shape. Doctors kept telling me that I needed to lose weight, and I tried, and I was never very successful. I was always tired and short of breath, and never had the stamina my friends had.

I was delighted to meet my niece, and my sister in law was still on maternity leave, so we did some shopping and sightseeing. She asked me if I wanted to walk the Freedom Trail, but I told her I didn’t think I was up for it. I was ashamed to be in such poor shape.

We walked the baby around the neighborhood, and I had a hard time pushing the stroller up the small hill on the far side of their cul-de-sac. It was embarrassing to be in such awful shape.

When I got home, I went to the doctor again, and I told her that I had an awful time getting short of breath when I exercised. She told me I probably had asthma, and gave me some inhalers. I took them faithfully, and they never did any good. I was ashamed that they didn’t seem to work for me, and I thought it was probably because I wasn’t doing something right.

Three years later, we moved from Florida to the Washington, DC area, and bought a lovely three-story townhouse. I struggled to climb all those stairs, and was embarrassed at how hard it was to do laundry, carrying all those baskets up and down the stairs. I told my new doctor how hard it was, and how fast my heart was beating and she gave me more inhalers, stronger inhalers, and they never did any good, and she gave me beta blockers, which did make my heart beat slower, but I was still feeling tired. I still thought I was doing something wrong.
In 2005, my niece was ten years old and we decided to take her on a great adventure. One of the foreign students we had hosted in Florida was getting married in a tiny hamlet outside Bordeaux, and we were invited to the wedding. My husband and my niece explored the ancient Citadel along the Gironde, where the legendary Roland was said to be buried. I sat on a bench near the car, enjoying the breeze and being embarrassed because I was in such awful shape.

We attended the wedding the next day, and in the French tradition, the civil ceremony took place at the tiny Mairie, and following, the religious service took place two blocks up the street at the church. The wedding party and guests strolled leisurely up the slight hill to the church. I struggled, and stopped, and inhaled on all my inhalers, and twenty minutes later, I had finally walked the two blocks to the church. It was humiliating to be in such awful shape.

In December of 2005, I had a new symptom. I had taken Lasix for fluid retention since my 20s, but now, nothing I did, not 80 mg, four times my usual dosage, would take the fluid from my feet and ankles. I flew to my family home for Christmas, wearing soft boots so no one could see how swollen and awful I looked. I moved very slowly, and no one knew how awful I felt. It was too humiliating to explain how I had let myself go.

On the flight home, I began to feel panicky and overheated on the small plane. I couldn't get my breath, and I was really in distress. My husband turned all the available vents toward my face, and asked the stewardess for a cold towel, and I did begin to calm down on the short flight. I was embarrassed to have made a scene.

When we returned home, I had an appointment with an allergist, another allergist, whom I had never met. She did a spirometry, and I was unable to get a full breath of air... my lung capacity was decreased. She did many, many of the little prick tests, and I responded to nothing... not even the control. She told me that I was not allergic to anything (which struck me as odd, since my face swelled into a moon every time someone mowed the lawn in my neighborhood), and she told me “Your only breathing problem is that you’re too fat. If you laid off the baked goods, you’d have no breathing problem.” So I went home and ordered an exercise bike.

A week later, I had such a severe cough that I once again went to my doctor. She heard my cough and ordered the nurse to start an albuterol nebulizer for me to breath. The mist was nice, but it did no lasting good. I showed her my swollen feet, and she told me that I needed to get a chest x-ray, and an echocardiogram. I had already scheduled an echo for the next Monday, Martin Luther King Holiday, because I had the day off. I went and got the chest x-ray, and the radiologist said that I appeared to have right heart enlargement, concurrent with lung disease. I told him that I had asthma, that I had been treated for asthma for years. He said that I needed to have an echo. I told him that I had one scheduled for that Monday, and he told me that if I felt bad during the weekend that I should go to the emergency room.

Monday morning my husband and I went to the cardiologists office, and my echo began at about 9 am. At about 9:05, the echo tech said sharply that she would be “back in a minute.” She returned in a minute with the very juniorest cardiologist in the practice, the one who had to be in the office on a federal holiday. They chatted for a few minutes, said something about four or five centimeters, then Dr Dougie Howser said, “Mrs Harris, what do you have planned for the rest of today?” I told him that I had to go to my boss’s house and repair his computer network. He said “That was plan A. Let me introduce you to Plan B.”

He told me that I was to go directly from his office to the nearby heart and lung institute, and that they were already preparing a room for me, because I was to have two procedures that day. First, I had accumulated fluid inside the pericardium around my heart, to a distance of four to five centimeters on all sides of my heart, which was making my heart unable to pump properly. I was to have a pericardiocentesis, to drain all that fluid away with a big needle. Second, I was going to have a right heart catheterization, because my right heart was enlarged and they needed to see why it was so large. I told him that they had been treating me for asthma for many years. I remember he sort of rolled his eyes. I didn’t know why. Perhaps I had done something else wrong.

We went to the hospital. My husband let me out at the door. I walked to the door, and stopped to catch my breath. I went inside to the information desk, and asked for the department I had been instructed to ask for, and tarried a few minutes to catch my breath. I walked over to the desk where I was to check in, and they immediately grabbed a wheelchair and put me in it. I protested that I could walk, just not very fast. They didn’t relent, so I sat. I went into the CCU and they started an IV, and in a little while, I was taken to the cath lab. The doctor, who had come into my room earlier and chatted, inserted a catheter into my groin, and I watched it on the screen above me as it came up and around the curved route of my heart, stopping in a number of places before it finally rested. He began to draw fluid from the very long needle stuck just below my breastbone. He filled up a plastic bag with fluid, attached another and filled it, and finally a third, taking a total of 776 ml of fluid from the sac surrounding my heart. He then took some more readings, and removed the catheter, and they took me back to my room. I had to lay flat on my back for an hour, but I chatted with my husband. The nice cardiologist came in, and told me how much fluid they had removed, and that I had something called severe pulmonary hypertension, that my pulmonary pressure was about 500% of what it should be, and that I would be meeting some other doctors who would be coming by to talk to me about my treatment. He didn’t act like this was my fault.

Soon a woman came in and introduced herself as a nurse practitioner from the Advanced Lung Disease clinic, and told me that I needed to call her and make an appointment as soon as I got out of the hospital. Quickly after that, another doctor came in and introduced himself as the director of the lung transplant program, and he asked me a lot of questions. The first one was, “Can you climb a flight of stairs?” I was tempted to lie, because it was so humiliating to be in such bad shape, but I said, “No, it takes me three tries.” He said that was not unusual.

Not unusual?

He asked me if I had ever been treated for connective tissue disease. I told him that while I had not had many of the symptoms that I had been under observation of a rheumatologist for a number of years because I had the persistent anti-nuclear antibody for a condition called CREST syndrome. He said that CREST was highly associated with pulmonary hypertension. He asked if I had taken diet pills. I told him no. And it was the truth, but I was ashamed because maybe I should have.

It suddenly began to dawn on me that this thing had a name, it was a real thing, and it wasn’t because I had a weakness of character and an undisciplined personality, it was because I was sick, and all those doctors for all those years had never, ever, ever looked beyond the obvious fat female in front of them. Fat was the only thing they looked at. It simply had not occurred to any of them to go beyond the obvious.

Then the doctor told me that there was a new treatment that was giving the “best bang for the buck,” and it was called sildenafil citrate, and that it was better known as Viagra, and I was going to be taking a lot of it. And I began to laugh, to howl, to scream, so loud that one of the nurses stuck her head in to see what was going on! No, I wasn’t lazy and I wasn’t stupid, I was sick and now I was going to take Viagra to get well. What a hoot!

So now I’m three years into this. I’m taking a LOT of sildenafil and it makes me feel great! I’m also taking Tracleer and Ventavis, and a bunch of other stuff, but now I can walk blocks and climb stairs and I’m not ashamed or embarrassed about anything. Except bad jokes.

 

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