What kind of person will you be?

I can’t tell you how many times people have told me that they feel bad complaining about their own life because people like me have it worse, and I don’t complain half as much. I believe that everyone’s battles are different, and that you should never compare yours to anyone else.

This afternoon I met an older gentleman who had the biggest smile on his face. He shared with me that he walks the halls as much as he can so he can be prepared and get in shape for the new heart he is currently waiting for. At that moment my heart broke for him. Last night I was feeling home sick. The negative thoughts and fears were starting to creep their way back into my head. Here I am all bummed out I’m in the hospital and it’s only because I’m getting off my medicine pump! I’m not sick. My breathing is good, my heart is good and I feel good.

Someone will always have it worse than you, and someone out there will always make the best of things. What kind of person will you be?

Cause I went from negative to positive.

I have been admitted at UPenn to start my transition of discontinuing my IV medications in hopes of switching to oral medication since Tuesday night. I have to say that I’m impressed with how well my body is doing. I had nothing but negative thoughts before I was admitted. My depression darkened any positive thoughts I had. I know myself, and when I get admitted all I do is sleep and realize how “sick” I actually am. However, I know there’s always light at the end of the tunnel as (cliché as that sounds.) Now my spirits are high again, and I can’t wait to leave the hospital pump free for the first time in six years! Six years!

Today is a very special day. My doctor has arranged for me to meet a newly diagnosed patient who is having a rough time. I’m beyond excited to help this girl realize that her life isn’t over, and that it’s just beginning. I don’t know her exact condition yet. But everyone who is newly diagnosed with PH always has a rough time but we get through it. . But Let’s hope this girl is opened to me and a new friendship develops! Wish me luck.

– Evelyn

I’m drowning over here.

Today I sat around all day emotionally eating (chocolate, chocolate and more chocolate!) waiting to be called that the cardiac floor of UPenn was ready for me. Unfortunately, both floors and rooms were at maximum capacity so I get to stay home for one more night. That tells me there are a lot of sick people on that floor. Do some of them have Pulmonary Hypertension like me? Are they young? Did they just get diagnosed? What’s their story?

I’m always interested to know why other people are on the same floor as me. I always feel so warm inside when I exchange my story with another patient, especially when they also have Pulmonary Hypertension. I try and stay strong for other patients like myself, to let them know they’re not alone and we have to stay positive. However, as of lately I’ve notice I’m the one who needs that advice the most. I’ve always wanted to help and support others, which is why I started this blog. I’ve stumble upon this quote and I couldn’t have said it better “The prettiest smiles hide the deepest secrets. The prettiest eyes have cried the most tears. And the kindest hearts have felt the most pain.” I’m drowning over here; my thoughts have taken me to a dark place. I wanted to be a mom, but that got taken away from me. I wanted to be this “normal” girl, and that got taken away from me too. I wanted to get a job and be independent. That also got taken away from me. I feel cheated in this lifetime. I’m angry, and I don’t know who or what to be angry at.

At times I feel like I am a burden to my family, especially my parents. They shouldn’t have to take care of their 26 year old daughter. My mother shouldn’t have to help me wash my hair because I can’t get my IV wet on my chest. It is embarrassing. How can anyone love me when I don’t even love myself? My mother heard me crying last week after we had all went to bed and she asked me if I ever thought about killing myself. I was honest with her and let her know I’ve thought about it, but that I would never do it because I’ve struggle my whole life. I’m not about to let it go to waste, but I did think if I died I would be at peace and my family wouldn’t have to deal with me anymore. We even talked about my best friend Liz who took her life five years ago today. I still hurt for her and miss her so much. We cried, a lot. We talked for another hour about anything and everything. In that moment I knew for the first time she felt all of my pain. At that moment we were connected and she could see right through me.

I normally don’t open up to her because she already has so much on her plate. But who knew a talk with her without holding anything back was just what I needed November is Pulmonary Hypertension Month and every year I try my hardest to raise awareness for PH in my area, and I always seem to fail. I feel like most people see me as “that sick girl.” No, I’m that girl who has bigger balls than you, and I’m going to get Bethlehem aware one way or another. I’m not going to tell you I’m 100% better because I have a lot to work on. Even starting this blog is a step in the right direction. I’m keeping my head held high and learning to embrace my life, all of it. I encourage you to do the same with your own demons. Let them know you’re back in charge. After all life is precious, and all lives matter.

  • Evelyn

Who, What, When, Where and Why?

Before I was officially born my mother was rushed to the hospital because I didn’t move for her all day and she had a habit of patting her stomach and I would wiggle but today that was different as a mother already she knew something was wrong, well an hour later the ECHO showed my Umbilical Cord was wrapped around my neck twice and I needed to come out ASAP. So I guess you can say I was born into this world already struggling, I was a preemie and needed to stay in the hospital until I gained some weight, the day my parents were suppose to take me home they walked into a room of doctors on top of this tiny little thing, they had found out I had a heart murmur and my heart was shifted to the right side of my chest also known in medical term as Dextrocardia. I know it must sound horrifying but my parents needed to understand it was livable and I’d be okay, Every year I would get my heart check up and I’d be set on my way.

As a child I was always outside riding my bike, playing hide and seek, playing with my barbies etc. It wasn’t until my pre teen years I started to notice it was harder for me to keep up with my peers. No big deal I was told I had asthma and was sent on my way with a inhaler. It wasn’t until December 17th, 2004 I knew I had something way more serve than asthma. I would have to rush from buildings during winter from sewing class to gym, then I would have to change to top it off, I notice I would get panic attacks when I knew it was time to switch classes because I could never make it to class without having to take a break or two or I felt like I was going to throw up. My gym teacher never gave me a break and I still remember just walking out of gym class one day to the nurses offices because my heart was racing so I was sent on my way home, thinking maybe I’m just having a bad panic attack I tried taking a nap in my living room while my mother was home babysitting my nephew, I couldn’t tell you how long I slept but I remember waking up soaking wet and my vision was blurry, I told my mom I was going to throw up and I dropped to the floor, from what my mother tells me my nephew laughed thinking I was playing (he was only 4) she just happened to look over and I was blue, she rushed over and gave me CPR that’s when I woke up and I will never forget the face of horror she had, tears rolling down her cheeks holding me, telling me to please stay with her, I remember releasing myself completely because I had no control over my body. The paramedics came, I was rushed to the ER where I kept singing Queen- Bohemian Rhapsody in my head to stay up because I would find myself wanting to close my eyes but knew if I did I would never get back up. My sister met up with my parents and I asked her to not let me die. She promised.

Hours later the ER doctor couldn’t find anything wrong with me (15 year old with heart failure) but nothing is wrong? I count my blessings every day the nurse that had me that day took it upon herself to not send me home because she knew something wasn’t right. I was transferred to one more local hospital and finally from there I was on my way to Childrens Hopsital of Phildephia, which made me nervous because I knew that’s where really sick children go and was I that sick? I was. Doctor and nurses were waiting in my room to start connecting me to just about every machine that would let them what’s going on. No later than two days I was introduced to man named Dr. Hanna which I didn’t know then but he would become my second father and one of the most important people in my life. He told me I was really sick and he think’s he knows what could be causing all of this but I would need to be put under for a heart catherzation because that’s the only way to find out, at this point, I was scared, was scared for myself but mainly for my family. He told me if it is what he think’s it is I’ll be waking up with an IV attached to my chest, at this point you could’ve told me to drink my own urine I would’ve done it. Whatever I needed to do to get better. Hours passed and I woke up to family surrounding me, I knew they had been crying, Dr. Hanna was right by my side when he explained me to and diagnosed me with Pulmonary Hypertension – Pulmonary arterial hypertension (PAH) is a chronic and currently incurable disease that causes the walls of the arteries of the lungs to tighten and stiffen. In someone with PAH, the right side of the heart has to work harder to push blood through narrowed arteries in the lungs. Eventually, the extra stress causes the heart to enlarge and become less flexible, compromising the heart’s ability to push blood out of the heart, through the lungs, and into the rest of the body. The cause is unknown in my case.

I cried, I couldn’t look at anyone in the room but my doctor, I asked him if I could get new lungs at that time not knowing what all goes with that process, he told me if he could fix my own lungs he will. He promised me I would walk out the hospital and I have to say at that moment I felt lied to and knew I didn’t have long.

Weeks passed and I’m picking up strength, learning how to walk again and still processing all that’s happened in just weeks! I ended up being there for three long very stressful months but it was worth it. To make a very long story short, it’s 2015 now and on December 17th I will be celebrating my 12th year of beating Pulmonary Hypertension. I was told I had 3 – 5 years and every year I would count down just wondering when my lungs and heart were going to give up on me, but as long as I don’t give up on myself I think my organs and I have a good agreement. With that being said November is Pulmonary Hypertension Month and this year, each and everyday I will be writing a new blog about my life and documenting every time I’m in the hospital to truly give you a glimpse of what I physically and mentally go through. I’d like to dedicate this first and personal post to my family because without them I don’t know where I would be right now, they’ve never left my side and I will never be able to thank them enough.

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Thank you for taking the time out to read this and sending positive vibes your way.

– Evelyn