I have severe pulmonary hypertension (PH) due to mixed connective tissue disease.
In 2013, my son had just finished his undergraduate degree and my daughter was just starting hers. I thought this was finally my time. I was going to work, play and save money. I was completely independent.
Caring Voice Coalition has been a blessing. With just disability as income, I couldn’t afford my copayments and premiums.
I am a registered nurse, and was working full time as a nurse educator. I noticed I was always tired, but thought most people felt that way. Then the fatigue increased. It started to affect my activities of daily living, such as taking a shower and putting on my makeup. I couldn’t have conversations with people while walking. How I ate didn’t change, but I was steadily gaining weight. All of that lead me to call the doctor. A cardiologist admitted me right to the hospital. By the time I came out, I couldn’t walk without assistance.
Doctors diagnosed me with PH officially on Sept. 29, 2013. I can’t forget the day. I started on medicine through continuous IV about two weeks after my diagnosis. It’s been almost four years since.
For about six months I only had enough energy to sit on the couch. I went from being completely independent to being completely dependent. Every single part of my life was affected. With the help of my family and friends, and in-home physical and occupational therapy, I started doing more on my own. I had to give up my home and move in with my brother and sister-in-law where my bedroom and bathroom were all on one level. I can’t imagine that it would have been easy, but they were strong for me. I don’t take it for granted—not any day—in regards to what I have and how much support I have.
It’s gotten 100 percent better. It just took time and a lot of effort on my part. It took more psychological effort than physical effort. I was only 48 with decades of life I wanted to live, and I had to realize this was not what I wanted them to be like.
Two events impacted my attitude shift in a major way. I went to a support group that I now lead and I won a scholarship to the PH conference held by Pulmonary Hypertension Association. Seeing others like me made a huge difference. I saw these inspirational people that had been knocked down and they still got up. From that point on I knew my attitude would be different.
I thank God every morning when I put my feet down on the floor and say, “Wow, I have another day to enjoy.” And that’s how I live my life. I love harder. I feel I’m kinder and more empathetic to others. I don’t feel like this diagnosis is a death sentence anymore, as I did in the beginning.
Being a nurse was how I defined myself. I tried to go back to work, but it was quickly clear that I didn’t have the stamina. Without work my insurance—which also covered my two children—was gone. COBRA cost almost $900 month. I took the penalty to withdraw from my 401k in order to pay for incredibly expensive medications, and quickly drained my savings.
Finally I had no choice but to apply for disability. But how does anyone live on so little? You hear about the astronomical cost of medications. Even with insurance, the copayments were still devastating. One out of my 10 medications costs $20,000 a year. I got good health care through the Affordable Care Act exchange. I would be dead without it. No one could deny me coverage or raise rates because I had a pre-existing condition. With disability, I switched to Medicare.
Caring Voice Coalition has been a blessing. With just disability as income, even though I’m living with my family, I couldn’t afford my copayments and premiums. I am searching for my own apartment through Section 8 housing. Without those options, without Caring Voice Coalition, forever I would be living with people.
My children are grown and have their own families now. I will never be without a lifeline and that’s incredibly lucky. I know that. But when you thought you would be relying on them when you were in your 70s or 80s, and you’ve lived a typical life up until the diagnosis, that transition is so drastic, so fast and so overwhelming.
When your life changes in a heartbeat, you just appreciate normal things more. I wouldn’t say that this disease is a blessing because of course I would rather not have it, but in a sense it has awakened me. Life is so fragile and I’m grateful for each moment and feeling I get to experience.
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