What I Have Learned in 10 Years: Deziree Rivera

August 14,2020

I have lived with idiopathic pulmonary arterial hypertension for nine and a half years. In those nine years I have learned a lot about the medical world and ironically a lot about life. Here is my story:

On March 24th, 2011, only nine days after my daughter and second child was born, I heard the term pulmonary hypertension for the first time, followed by the words, “severe right-sided heart failure.” I sat in the cardiologist’s office alone and terrified. This particular cardiologist really didn’t know a lot about the advancement the PH community had made in terms of therapy and prognosis, so she immediately told me I would only live maybe another two years. She told me my only hope was a double lung transplant.

The plan was to have a right heart catheterization the next day and she would tell me the plan after that. After my heart cath she told me and my family that my pressures were over 120 and normal pressures were anywhere from 15-30. I was in a very dangerous situation. As scary as this was and as terrible as she made my situation sound, she did the best thing she could ever do for me, and that was to refer me to Washington University in St. Louis.

A couple short months later I had to wait to see Dr. Chakinala for the first time. During those couple months I sat confused, angry, and sad almost daily. I had two kids and one was a newborn. How was it that I wouldn’t be able to see them grow up? How was this fair?

In May 2011 I met Dr. Chakinala for the first time and something about his kind smile and understanding face made me relax for the first time since I was diagnosed. He assured me that my story wasn’t over and that advances in the PH community would give me a shot at a longer life with this disease! I started in a double blind study shortly after my first appointment that I would go on to be a part of for the next three to four years. At the end of the study I found that my life was saved by the wonderful drug adcirca. I continued on the adcirca for a couple years before having to add opsumit.

I have been very fortunate to only need these two therapies and I only need oxygen at night. I have been able to work full time in the mental health field and I have been blessed to watch my babies grow up.

Last year my son was diagnosed with brain cancer. Things were finally getting back to a now “new normal” for all of us when the pandemic began. Since the first cases hit our country, life has been different again, as I am sure it has been for a lot of people.

The entire month of April I took off work for the safety of my son, due to him just completing chemo and how high risk it was for him to be exposed. I also did this for myself because of the PH. In May I went back to work, but still used caution in everything we did. Work was pretty consistent until I was diagnosed with a blockage in my small intestine and landed myself a four day hospital stay. I was very fortunate to not need surgery.

COVID-19 has been a terrifying experience with having such a medically fragile household, but we’ve become stronger during this pandemic. Bills have piled up but we’ve had some of the best family time together!

The unmet needs fund is a blessing that will help put groceries in our home and pay a couple bills we were unsure how would be paid. This is such a huge blessing!

One thing I’ve learned over the past 10 years is that life is so uncertain and things can change in the blink of an eye, but we’ve never given up. I like to think my diagnosis in some way would prepare me for my son’s. I am not comparing PH to cancer in any way, but I was able to understand my son’s frustration and help him through such a huge life change. I will forever be grateful for that.

Deziree received COVID-19 relief funds from the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.

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