Patient story

Amanda McKeeAmanda McKee

My name is Amanda and I’m now 29 years old, but my story begins when I was 26. I was coaching an 8, 9, and 10 year old girls’ softball when I became short of breath. I thought I was just out of shape, but something within me told me it was more. I went to see a pulmonologist and he thought I had allergy induced asthma; gave me some inhalers and sent me home. A few weeks later, I was coughing up large handfuls of blood…something that could not be ignored or disregarded. This is when I started to panic. I called my doctor; he reviewed my chest x-rays and said that he thought I had bronchitis. I know that coughing up blood is a symptom of bronchitis, but this was a large amount and it just didn’t seem right to me. I left feeling unsettled.

Even though I took my antibiotics and the blood seemed to go away, I called him back requesting I get a CT; if I cleared that then I would feel better. Luckily, he agreed with me and scheduled it for the next day. Hoping for the best, but fearing the worst, I went in by myself. I heard the words everyone fears: “Uh, the doctor wants to talk to you”. Immediately, my thoughts turned to cancer, tumors, death, etc…much to my surprise when he told me I had a chronic pulmonary embolism…”a chronic, pulmo… what”?! That’s the day when my life changed forever. I was immediately thrown into the hospital for the next 6 days while they ran a serious of tests (I felt like a lab rat), only to conclude that I had the embolism for the last 1-3 years, but was completely asymptomatic; other than the pulmonary hypertension. It was old and well embedded into the vascular wall of the pulmonary artery, so ‘traditional’ methods of dealing with an embolism weren’t going to work. Furthermore, I tested negative for all the genetic and environmental factors that normally cause embolisms; the only explanation left was due to oral contraceptives.

I lived the next 2 ½ years with a series of doctor’s appointments and tests, and more tests; all while trying to deny how sick I was becoming. I knew I was getting worse because the days were becoming longer and harder to get through. I couldn’t walk as far, would take the elevator more often, made excuses for not socializing with co-workers and friends because I was exhausted. My legs were swollen after every day and it was moving up to my mid-section, and arms. I was always tired and out of breathe, and I felt like I was living in a giant bowl of jell-o. Soon after, I became really sick. To the point where I couldn’t get out of bed, hated having to walk to go to the bathroom, and taking a shower was a major event that would wipe me out for the rest of the day. I could no longer deny what was happening and I checked myself into the hospital.

They ran all the usual tests and everything came back horrible, of course…I was used to getting bad test results at this point. They put me on lasiks to get rid of the 40lbs of fluid I had throughout my body. One doctor put it to me in terms I clearly understood, “Amanda, we aren’t sure how your heart is even beating right now. You are in severe right-heart/congestive heart failure and if you don’t have this surgery, you will die”! Ok, I get it, I’m going to have the high-risk pulmonary thromboendartectomy surgery. Once I got home, it was a serious of more testing, phone calls to California (having the surgery at UCSD), and getting my life in order. I was preparing for the inevitable, getting the financial business in order, my will, power of attorney, medical power of attorney, living will, etc…it was overwhelming and hard to comprehend.

Eight weeks later, we were on a 4 day road trip (my husband and I attempted to make a small vacation out of it to help me mentally prepare for what lied ahead) to San Diego. After all the consults, we didn’t get high hopes from the folks at UCSD, maybe reducing my pressures to half of what they were; which at the time was PA= 74mmHg and PVR=1349! I had to take what I could get, there were no alternative options. I was told that I crashed on the operating table and made Dr. Madani (world’s greatest surgeon…a truly great man) rush through the surgery. Luckily, he got it all, including repairing a small hole in my heart that happened as a result of the high pressures. He was really relieved that 48 hours post-surgery my numbers came way down…PA=23 and PVR=283…REMARKABLE!!!

Problem is that my lungs had been deprived of blood and oxygen for so long that when they were receiving a fresh supply, it was too much for them. I had what was called a severe lung reperfusion injury, one of the worst they’d seen. I had to be hooked up to an ECCOR machine (some say ECMO) for 8-9 days (they said it was in the top 5 worst all time and that I was on the machine the second longest ever). I had over 5 liters of blood drained from my chest; the human body only contains 7 liters. I laid in a drug-induced coma, completely paralyzed, for over 3 weeks, and by the time I woke up, my muscles had completely deteriorated. I mean literal ‘mush’. Not to mention, I was consciously intebated and on a ventilator. It was like hell, being trapped in my own body, as I was aware of all that was happening around me. I understood what people were saying, but I couldn’t move (not even to scratch my face) and I couldn’t communicate, or breathe on my own. It was this way (all while fighting off infections, attempting to breath off of the ventilator, and move my muscles once again) for over 53 days. This experience was by far, one of the hardest things I’ve ever had to do.

The staff at UCSD is the best! After all that time, I have nothing but the highest regard for every single doctor, nurse, respiratory therapist, aid, etc…and all that they did for me; not because it was their job, but because I formed real friendships with these people. They lifted my spirits in ways you cannot imagine. The doctors, respiratory therapists and physical therapists also seemed to find their way to my ‘new’ room in intermediate care…I love each of them. But the best was when I finally got to come home.

When I came back home to St. Louis, I’d be under the care of Dr. Chakinala. This is where the real work began. I still needed help to go to the bathroom, shower, and get around, so my mom and husband were great help there. Once I accomplished that, it was moving onto going outside in the world, with help, of course. But I just kept working, pushing myself further everyday, testing my limits (you’ll know when you’ve gone too far), as I do to this day. I woke up in pain everyday, but eventually it went away as I healed and got stronger. I kept pushing and then I felt well enough to go back to work, only part-time though. I’m currently not on medication for now, but it’s not known how extensive the damage was to my arteries from the clots. PH is always a concern for me, and something I’ll constantly be checked for.


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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.