REAL Talk- Under Pressure- living with lung disease

-By Evelyn Melendez

Shortness of breath, tinted blue lips, and the inability to gain weight were a few of the warning signs that something was terribly wrong with me, so I did what anyone else would do and got myself checked out. As quick as I got to the doctor’s office was as quick as I was diagnosed. It was simple, I had Asthma! No big deal, I have an inhaler now and that’ll solve all my problems; at least that’s what I thought.

Over the next month or so my inhaler was doing the opposite effect on me, my breathing was getting worse I could not finish walking up a flight of stairs without stopping to catch my breath, I was naive and didn’t think to much about it. Maybe my asthma was getting worse due to it being Winter, after all I was fifteen years old and thought I was invincible, as every teenager does.

December 17th, 2005 my life changed forever and would never go back to what I call “normal.” I passed out on my living room floor and was medically pronounced dead for a whole minute..a whole minute. If it wasn’t for my mother being home that day and giving me CPR I wouldn’t be here! I was rushed to Muhlenberg, Cedar Crest and finally Children’s Hospital Of Philadelphia (CHOP). At this point I’m mentally and physically drained I thought this was the end for me I’m dying that’s it; It’s over for me. A week passed and I had just enough strength for surgery, the doctor that was taking care of me had somewhat of an idea of what was wrong with me but wasn’t certain, he said this procedure would let him know.

He told me if his prediction was right, I would wake up with a heart catheter that will pump medication inside me 24/7. Okay fair enough, I just want to get better, let’s get this over with. Not realizing how this would effect me when I woke up, I agreed and the surgery was started. Three hours later I woke up and to my surprise I had a cath attached to my chest. Knowing this was an option before I was even put under, I was still in shock and wanted it out immediately.

THE ILLNESS:

Before I could even say anything to my doctor he sat down next to me with a paper and pen with a smile on his face and his exact words were “here’s the deal,” he drew two lungs with circles inside them, then started to color in most of the circles and left very few uncolored and told me “these are the vessels in your lungs. Most of them are closed due to you having Primary Pulmonary Hypertension.”


Excuse me did he just say Primary Pulmonary Hypertension?! What is that? And how do I get rid of it? PPH is a rare lung disease that closes up the cells in your lungs making it very difficult to breathe. Your heart has to work twice as hard to receive oxygen., and you get high blood pressure in the lungs. That being said, I now understood why I had passed out- I had heart failure.

It’s all starting to make sense now, but it’s starting to scare me at the same time. How did I get this? Did someone give it to me? Was it something I did? No one gave me it, no it’s not something I did to myself and there is no reason why I got it. In medical terms it’s Idiopathic Primary Pulmonary Hypertension which states there is no evidence as to why I got it or how long I’ve had it.

So where do I go from here? Well I didn’t go far, I had to be hospitalized for three months. I celebrated my sweet sixteen, Christmas and New Years there. I had to learn how to walk again since I had been on bed rest for so long. I also had to learn how to swallow pills, since I’d be taking fifteen each day now.  I had to fully understand my medical condition.

Painting by Brysen Kinslow

Once I learned all of that, I was finally allowed to come home. As excited as I was, I was also very nervous. I would be going into a whole new world as a whole new person. Having an illness at such a young age made me grow up faster than I wanted to. I didn’t have a good high school experience due to having PPH. I was battling with myself most of the time to be comfortable in my own skin.

Despite the fact that I had family and friends who were behind me every step of the way, I still felt alone, and my self esteem was beyond low. High school is a tough experience for any teenager, so imagine being 16 years old missing half of your 10th and 11th grade due to being sick all the time and having a coronary catheter attached to the left side my chest. Not something I like to show or walk around with. I always felt people were staring at it and not me while I would talk to them.

My 12th grade year of high school I got the best news I’ve received in a long time; I was getting the catheter out because I was healthy enough to be on oral medication! Just in time for prom and graduation, I couldn’t ask for a better graduation gift.

Not a very "Valentines-ey" heart, but hey it's educational! And education is the greatest gift one can receive ;)

After high school I was still battling with being comfortable in my own skin and accepting myself for who I am. A year after high school I was put on a new medication that was administered through a pump, well, looks like I’m back to square one. I can’t keep away from these things. I had to do what I had to do to stay healthy, and my real friends and family would not care if I had to walk around with a pumpkin on my head. It was helping me to survive and that’s all that mattered. I’d been on it for five years and it had become my best friend.

LOVELIFE?

As you can imagine dating isn’t easy. I always joked around saying guys needed to sign a contract before dating me since I come with so many health issues. My love life never really boomed, and I was always one of the “guys” which had its ups and downs. After awhile I gave up on the dating scene and figured if I was going to find someone, it would happen eventually. I met my current boyfriend the summer of 2008 and we started hanging out summer of 2010. We had an instant connection and hardly spent time apart. You could say I was the typical girl and had a crush right away; not everyday do you find someone who looks beyond your health issues and sees you for the person you are.

“It really comes down to accepting people for who they are. That is how we are supposed to live,” Brysen Kinslow of Bethlehem said. “If you live your life not accepting people and not accepting that things happen for a reason, you are in for a long, hard life. Granted some health issues that people bring on themselves by their own actions, I have a harder time accepting, but with Evelyn, she didn’t ask for this, or make bad choices to get PPH. It just happened.” I feel lucky to have found somebody that is so understanding with my condition, in fact we tend to forget how life threatening it can be, and in some ways that’s not a bad thing. You can’t dwell on something you can’t fix- you simply learn to live with it and your life becomes yours.

-Evelyn Melendez

5 Responses to REAL Talk- Under Pressure- living with lung disease

  1. I loved reading your story, Evelyn. I am so sorry that you have to deal with this your entire life, but I must say you handle it with beauty and grace. Thank you for sharing the details of your illness. I am sure it will help others who are suffering. Great Job!

  2. Monica Bates says:

    This is a great article, Evelyn. Well-written and great pictures to help visualize what you’re talking about.

  3. jbones1961 says:

    Hi Evelyn:

    Thank you so much for this article. I am going to bookmark and/or print it out and have my daughter read it. My daughter is 17 years old and was diagnosed with PH at 15 years old. Her PH is caused my a congenital heart defect we didn’t know she had. She’s had a very difficult time dealing with this. She was diagnosed at 7 years old with asthma so her whole life we thought she had asthma.

    It is very difficult as her mom seeing her go through this. I’m so glad that you have found a special someone who looks past your health issues. I wish the same for my daughter.

    Hugs:o)
    Jane~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers (dx 1/22/10) BHJS (dx 2/4/11)
    “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

  4. Angie says:

    Well written story and Great attitude!! One day at a time….

  5. Evelyn says:

    Thank you all so much for the kind words! jbones1961 I was diagnosed with PPH at the age of 15 as well and it’s a very difficult age, and having PPH on top of that is very hard. I can assure you things will get better in time, every once in awhile you’ll have your bumps in the road, you just have to put your all to get over them. I have a PPH group on Facebook that could help you and your daughter out, I have so many PPH caregivers and patients on there it’s overwhelming and exciting at the same time to realize you’re not alone.

    http://www.facebook.com/groups/12045436970/?ref=ts

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