Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

To learn more about PH visit phaware® is a 501(c)3 organization. © Copyright 2015. All Rights Reserved.

Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bayer, United Therapeutics Corporation, Acceleron, CVS Health & PhaseBio Pharmaceuticals.

Samantha Ramirez - phaware® interview 236

Apr 9, 2019

Former pulmonary hypertension patient and lung transplant recipient, Samantha Ramirez discusses her PH diagnosis because of over-the-counter diet pills and the need for continued need for PH awareness.

Hi, my name is Samantha Ramirez and I'm from Orange County, California. I was diagnosed with pulmonary hypertension back in April, 2006.

My weight has always been a battle for me since I was a teenager. Off and on through high school, I used diet pills. Back in that time, lots of young ladies were using fen-phen. I didn't want to use fen-phen because it was very scary hearing of all the horror stories of women just dropping on the floor and dying because of using diet pills. So, I just started using over-the-counter diet pills and that is something that they don't put on the bottle, that it's going to give you pulmonary hypertension or any sort of rare lung disease.

I visited my primary care doctor, because I was working out to Tae Bo; so for those of you that don't know what Tae Bo is, back in the day, in the 90's or 2000, it was a boxing workout. So I was trying to do that, trying to be healthy, because weight has always been a battle for me. One day I was working out and my heart was in my throat. I figured something was going on because it wasn't normal. I was just too young to be having any heart condition.

I went to my primary care [doctor]. They checked out my heart, did an X-ray and they just came back with, "Your heart's enlarged. It's about the size of a football." I figured, "Okay, so what are we doing after this?" They're like, "Oh well, we need to run more tests. It's going to take about two to three weeks." "I don't have three weeks," I told her. "I feel like I'm going to die if something isn't done right now." And she just said, "If you feel that way, go to the ER." So when I went to the ER, they diagnosed me with pulmonary hypertension through the use of my diet pills.

Being so young and not being able to walk from my home to my car within a few months was just like, "Whoa what's going on?" I also had blue lips. I had lots of swelling in my ankles, a lot in my stomach, and my face. I had also what they said is very rare for PHers to have, but it did happen to me, I had severe coughing. So I was unable to have a conversation with someone like I used to. A normal person can talk probably for hours. I cannot. I would always be short of breath or cough during a conversation, and I was just basically exhausted from coughing. My ribs were hurting non-stop all the time with the symptoms of PH. And also the pain in the jaw when you're eating.

You have to cope with a lot of things that PH takes away from you, from your normal life. Simple things. Combing your hair, tying your shoes, putting on your clothing, brushing your teeth, taking a shower. Just simple stuff. Sometimes I had to literally ask for help from my daughter [who] was actually about eight years old at the time. She went through a lot as well with helping me out. Also family has to cope with your illness as well, if you have a spouse or not. They have to cope with it, and sometimes they stay and sometimes they don't. In my case, it was better that my spouse left. That's what happened with me. I was going through the PH, and I also had to cope with PH and going through a divorce, and dealing with the whole nine yards. That was part of it, as well.

I think that was one of the biggest problems with dealing with PH, is you have to adjust your life. It's hard to have your own children help you do things, especially when they're so little. And now, after my transplant she tells me, "Oh you can do it now. You can do this. You can do this." So she kind of challenges me and I think that's a good thing. But it is very difficult I think for a child and family to cope, but it is always good to have support.

In my beginning of PH, I didn't have a lot of support like meetings and support groups, because I didn't know of any of them. So I had to stay strong and be positive, and that was my motivation to get through with PH. And my family that I had near, which was my mother, my father, and my brothers, and my daughter at the time. And my grandmother.

Sometimes PH can be depressing and you have to kind of push through it because that's the point of life, I think it’s just fighting for your life. When you think negative about it, I think it kind of makes you more sick. That's what I kind of went through. I felt that if I kept negative people in my life, and kept thinking negative things, or just bad things about PH, then it would just kind of bring me down. So I try to think of the positives and then just keep moving forward until I figured what I wanted to do with the next step with PH. Even though I know that there's no cure for it, in the reality of it, something was going to happen in my life and that's why I kept pushing for it.

When I was first diagnosed I was offered a transplant right away. I was told that I was not going to live the rest of 2006 if I had not taken any meditation, any oral medication, or intravenous medication. So I was first offered transplant, and then I said "No." Because it's a risk. They tell you the whole process of it, so I decided to go with just oral medication. It worked for a few months, probably about two months in 2006 when I went on them in April. Then after that I decided to go on Flolan. So [my doctor] did get me on the Flolan, because my doctor encouraged that if I got on the Flolan, I was going to feel better [and] be able to function better. But unfortunately, it didn't work for me. It worked for a few months, about the same thing, about three months, four months, and then I would titrate down again. They would up my dose. I was on Flolan probably about three and a half years, almost four, until I got my transplant in April of 2009.

When you go through a transplant, you can't be too stable or too sick. You have to be in between, you kind of have to be in the middle. And that's kind of hard to do sometimes, because as a PH patient sometimes you have other issues that you're dealing with that you might not qualify. But fortunately, I was a good candidate. I was put on the transplant list after they do all the process and all the testing. Then they put you on the list and you have to wait. My waiting for my transplant, [was] not too long. I know that others say that they waited for years or months. For me, I was on the transplant list probably about four months in total. I got taken off the transplant list probably about two to three weeks, because I ended up with a really bad cold. When you're sick with something they take you off. Once they put me back on active, I got the call within about two weeks after that.

I got the call to transplant, it was about 4 o'clock in the morning from Cedars-Sinai. I was just excited. At the same time, scared because transplant is a scary thing. Like I said, in the beginning I was offered transplant and I didn't want to do it because of all the risk; but then again, I thought to myself, "PH there's no cure. With transplant you're taking a risk, with both of them either way." I was ready in my mind; spiritually, emotionally, and physically I was ready for the transplant. And that's one of the things that you have to focus on when you're going to go through transplant, is have all those three in line. The hospital that does your transplant will also make sure that you have those in line. It was a difficult decision but I knew I had to do it, because I knew I wanted to save my life. Even though I was risking my life, there was a chance that I was going to make it. And I did. So nine years later, here I am.

The advice I give to someone who is either fighting with PH, or you're going to fight through your journey with transplant, either one it's a battle. You have to be ready for it. You have to stay positive. There is ups and downs for both of those things. Transplant is not a cure. It definitely is not. I know of a lot of transplant patients that have passed on waiting for transplant, and also after transplant just for different reasons. Everyone is different, so you can't base your experience from the other person. I suggest that you take the positive parts of it, and just again, not think too much of the negative part of it.

So after my transplant, I met a lot of PHers. I know the experience of going through transplant, and also being a PHer. So I understand both sides. I think for me, meeting a lot of friends and PHers has kept me motivated. Even though I had my transplant, I still stick around the PH community because I met so many great people. It's not just something that you just have a transplant and a lot of people forget. Yes, you want to forget about PH, you do. But I do want a cure.

My goal is to help spread PH awareness a little more because there's not enough of it. I had a lot of experiences when I had PH, going to the hospital, where nurses and doctors did not know about PH. Here in the Orange County area, they knew me as "The PH Girl." Here comes the girl with the PH. Because unfortunately, there's not enough knowledge with doctors and nurses, and just caregivers, and people in general.

One thing that motivates me as well to continue to spread awareness is, I started an organization myself. It's called the FUCK PH Organization. If you want to be bold about PH, this is an organization you want to check out. I did it to help spread more awareness. I think any bit counts because we do need it, and the goal is getting as many people to know about PH so we can eventually find a cure.

I am Samantha Ramirez and I am aware that I'm rare.

Learn more about pulmonary hypertension trials at Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: #phaware #ClinicalTrials @antidote_me