“I went through the hell that everyone is still going through today.”
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| Diane and me at "The Kitchen Table" where PHA was first brought to life. |
Diane Ramirez is a name many in the PH community may
recognize, and with good reason.
As a 26-year survivor of pulmonary hypertension, she is perhaps one of
the longest living patients we have in our community. And what she has done in
her time with the disease is nothing short of amazing. It is my pleasure to
bring you her story.
It began, likely, around 1984. Diane had asthma from early childhood, but around this time, her shortness of breath and difficulty with breathing began to increase. For three years, she searched for answers. Changing medication wasn’t helping, in fact it was making some things worse. She went from being told that her asthma was worsening, to that she had a mitral valve proplapse, to being referred to a therapist and being put on meds because the symptoms were supposedly all in her head.
As Diane put it, “I went through the hell that everyone is still going through today.” And she’s right… even so many years later, patients still struggle on average 2.8 years searching for a diagnosis.
It began, likely, around 1984. Diane had asthma from early childhood, but around this time, her shortness of breath and difficulty with breathing began to increase. For three years, she searched for answers. Changing medication wasn’t helping, in fact it was making some things worse. She went from being told that her asthma was worsening, to that she had a mitral valve proplapse, to being referred to a therapist and being put on meds because the symptoms were supposedly all in her head.
As Diane put it, “I went through the hell that everyone is still going through today.” And she’s right… even so many years later, patients still struggle on average 2.8 years searching for a diagnosis.
It wasn’t until 1987, at the age of 24, when she passed out
going up a flight of steps, that answers began to emerge. When she came to, she
was in the ER. Still in her sharp business suit, surrounded by doctors who were
as confused as she was. A medical history, blood work, x-rays, CT scan, and
finally a cardiac cath finally yielded the answer – Pulmonary Hypertension. The
diagnosis came as a relief of sorts, finally an answer to the issues that had
plagued her, and validating her concerns. However, at the time, there was
nothing they could do for her but put her on blood thinners and begin the
process of being worked up for a transplant.
In addition to no medications, there were also really no other patients to be found. PHA didn’t exist yet. Flolan trials had not yet begun. And the people taking care of her weren’t PH specialists. They didn’t really exist the way we know them now yet either. Instead, she was under the care of the transplant team at Yale.
“His story is a part of my story.”
Finally, Diane “met” another patient. It was her own brother, Ariel Ramirez, diagnosed at age 18 in 1992. It turned out their particular form of PH was familial. Even at that time, there were only about 190 diagnosed patients in the country, mostly women, and Ariel had struggled to get a diagnosis as well. There was much loneliness in this rare disease, and the two bonded over their shared experiences. Ariel had a wonderful sense of humor, with a contagious laugh, and he was incredibly brave. During a trial to try to transition him from IV to oral meds, he suffered a massive heart attack and passed away at the age of 36. His efforts and his ultimate sacrifice are a part of PH history.
In addition to no medications, there were also really no other patients to be found. PHA didn’t exist yet. Flolan trials had not yet begun. And the people taking care of her weren’t PH specialists. They didn’t really exist the way we know them now yet either. Instead, she was under the care of the transplant team at Yale.
“His story is a part of my story.”
Finally, Diane “met” another patient. It was her own brother, Ariel Ramirez, diagnosed at age 18 in 1992. It turned out their particular form of PH was familial. Even at that time, there were only about 190 diagnosed patients in the country, mostly women, and Ariel had struggled to get a diagnosis as well. There was much loneliness in this rare disease, and the two bonded over their shared experiences. Ariel had a wonderful sense of humor, with a contagious laugh, and he was incredibly brave. During a trial to try to transition him from IV to oral meds, he suffered a massive heart attack and passed away at the age of 36. His efforts and his ultimate sacrifice are a part of PH history.
Staying the Course
Throughout this, Diane had her own journey with treatment.
She had originally met with doctors in Providence, RI who were starting the
Flolan trials, but she did not qualify because she lived too far away. In
addition, the idea of IV meds was so overwhelming, that it was almost a
relief not to go on them.
By the time Flolan was FDA approved, she had started to
stabilize, and opted to stay off the only treatment for PH at the time. This
might sound crazy to some… but the idea of a permanent IV in the chest, with
all it entails, never mind it was such a new medication at the time, was too
much.
Diane credits her ability to persevere with doing everything she could to stay healthy: eating well, keeping the house clean of irritants, wearing oxygen, and exercising. She’s also quick to point out that there is absolutely no reason for people to forgo medicine today. There are so many options out there.
Still, in 2001 she had started to go into heart failure, but
remained, as she says, “mule headed” about IV medications. She happened to
visit Duke University during a vacation to North Carolina and learned that
clinical trials for Tracleer had begun. She relocated to North Carolina to
start a new life for herself, a life that would include this new drug Tracleer.
At this point she was on oxygen 24 hours a day. The first months were difficult. She slept a lot, with very low blood pressure. And then, six months into it, something changed. She was at the mall with her sister and turned from window shopping to see her sister crying. Confused, she asked what was wrong… and was told she had just walked the entire mall without getting short of breath or needing to sit and rest, and she hadn’t even noticed. Slowly but surely, things were turning around, and it was truly a blessing.
A little while later, Diane started Ventavis as a precautionary measure. She did that for two years, before embarking on the Tyvaso trial and now has been on Tyvaso for five years. She’s tried Revatio and Adcirca as well, but they have not proved to be a good match with side effects. Still, she thinks she might try again sometime.
PHA
At this point she was on oxygen 24 hours a day. The first months were difficult. She slept a lot, with very low blood pressure. And then, six months into it, something changed. She was at the mall with her sister and turned from window shopping to see her sister crying. Confused, she asked what was wrong… and was told she had just walked the entire mall without getting short of breath or needing to sit and rest, and she hadn’t even noticed. Slowly but surely, things were turning around, and it was truly a blessing.
A little while later, Diane started Ventavis as a precautionary measure. She did that for two years, before embarking on the Tyvaso trial and now has been on Tyvaso for five years. She’s tried Revatio and Adcirca as well, but they have not proved to be a good match with side effects. Still, she thinks she might try again sometime.
PHA
Around 2002 -2003, a family member gifted Diane with a computer. She was so excited to have access to the Internet from her home. She found PHA online and the first patient she ever chatted with was Alex Flipse. They exchanged phone numbers, and started calling. She began to meet more patients and eventually found the local Piedmont support group, with Cindy Pickles, who still leads the group today and also sits on the PHA Board of Trustees.
Diane’s first PHA Conference was in Texas in 2006. That was it for her – she was in! She says, “It was like somebody threw me the football, I caught it and started running… and I’m still running. Meeting all the patients was overwhelming, hearing the doctors talk about the research… it was really motivating, and meant so much.”
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| Diane snags not one, but two, North Carolina Congressmen during a recent advocacy visit to Capitol Hill. |
Her first up close and personal experience with PHA was a wonderful thing. Of the experience she remembers,“Talking to Katie and hearing Carl… and realizing I needed to take action. I can’t wait for somebody else to fight my battles. This is mine.”
Well, battle she has. In 2011 Diane also joined the PHA Board of Trustees, where she has continued to lead the way in advocacy work, and is helping to meet the needs of patients, particularly long term survivors who need their own unique spin on support. She says, “It’s so cool to see stuff coming to fruition and take off, and know that I was a part of that.”
I asked what gives Diane her motivation today. She laughs deeply and says,
“To be a long term survivor with this illness, and to be a part of the group of people who started with nothing, to being a part of PHA today, you have to be a little “touched”, a little fragmented part of your brain that helps you get through it. It is so challenging, so extremely overwhelming… it has been an incredible upheaval, and major change, and extreme positives… one end of the spectrum to the other… you have to have a little insanity in your life to make it through.”
With Diane, you should be prepared to laugh with her from
your core… and maybe cry from there once in a great while too. She’s right. This is a crazy, crazy
journey. I for one am very glad she is on it with us.
Her advice to long-term survivors is, quite simply, “Never give up.”
To the newly diagnosed, she says the same, but adds, “Get involved. Now that you’re diagnosed with PH, this is your battle. Get involved with it. Be a part of the fight.”
Her advice to long-term survivors is, quite simply, “Never give up.”
To the newly diagnosed, she says the same, but adds, “Get involved. Now that you’re diagnosed with PH, this is your battle. Get involved with it. Be a part of the fight.”
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