PHighter Friday: Colleen S

In the PH community, I often hear people being asked what their life was like before diagnosis. I've been asked this myself many times over the years. The thing is, my life before I was diagnosed with PH was the same as my life is now. I don't know what it's like to breath normally. I don't have a clue what going from an active lifestyle to a PH lifestyle is all about. That is because PH has been my entire life. It's all I've known. I actually thought, as a kid, that it was normal to take hours to recover from running around with your siblings and friends. I thought everyone took naps when they were exhausted! And although everyone around me, family included, always told me I looked purple, to me that was just my thing!

I was diagnosed when I was 9 months old, but technically, I should have been diagnosed months earlier. My mom brought me to a free clinic to get my first set of immunization shots, and a doctor there thought something was up with my heart. My mom took me to the pediatrician, who didn't think anything was wrong. So at the same free clinic for my 2nd set of shots, the same doctor who saw me the first time told my mom that something was seriously wrong with me, because I looked blue. My parents ended up taking me to a children's hospital, and after many tests, they discovered I had a pretty bad congenital heart defect and pulmonary arterial hypertention. At that time (1975), the doctors couldn't do anything. It was too late for surgery to correct the holes in my heart, and there wasn't anything to treat PAH. My parents were told I might not make it to my first birthday, or I may possibly live til I'm 50. They weren't given much hope! But here I am, 39 years later, and I'm still living to share my story!

First Airplane Trip

I grew up with a lot of "cannots." I cannot participate in sports. I cannnot take gym class. I cannot go on rides that'll get your heart rate up too much. I cannot get pregnant. And so I lived my life following the "cannots." I often wonder if that really was a good thing or a bad thing, but I guess since I followed those rules pretty closely, and I'm still here, it was a good thing? I followed my grade school dream of becoming a teacher, getting my Bachelor's and eventually ending up in a preschool classroom. I loved it! But after only a few years, those preschooler germs started loving me. Too much. I was on my third major respiratory illness during my third year of teaching when my primary doctor came into the exam room with tears in her eyes and told me I had to quit my job. She wrote me a note that I took to my director right after the appointment. I was 24 at the time, and never even thought about quitting a career at that age. Who would??

A few years later after my PAH symptoms continued to get worse, I ended up going to the Cleveland Clinic in Ohio. I was referred by my doctor to go for a transplant evaluation. At the time, the shortness of breath started happening more frequently (just getting dressed in the morning was becoming a 30 minute event), and an elephant had permanently moved in on top of my chest. That was one symptom I didn't have growing up, and it was not a symptom I particularly enjoyed! Being sent to Cleveland was very scary. Transplant was even scarier!! But my first visit, I was sent back home after so many tests with instructions to start taking Coumadin, a blood thinner, and to wear oxygen all the time. After several more visits to Cleveland in the following months, I was put on Tracleer. I had no idea what it was, or exactly what it would do. All I knew was that I surely hoped it would help my elephant to move on, and that I would start feeling better!!

My first shipment of Tracleer brought me not only the first medicine I'd ever try for PAH, but it also brought me into the world of the pulmonary hypertension community. I grew up knowing I had PH, but it was something that was never focused on. My heart condition was the central star all those years. Once I found the Pulmonary Hypertension Association website, my knowledge of PH started to expand. But what really hit me?? THERE WERE OTHERS LIKE ME!!!! I seriously spent a week reading the message boards and crying, because there were people I could relate to and totally understand!! It was like finding a miracle! 

Tracleer got that stupid elephant to move out several months after being on it, and I also didn't feel as short of breath doing certain things like I was always used to feeling. It was a pretty awesome feeling for a few years, until I felt like I needed to add another medication to the mix. Revatio was added, and the combination of the two is what I am still on today. Pulmonary rehabilitation was something I found out about from phriends (friends who have PH), and after inquiring about it, I started going twice a week at one of my local hospitals. It's been a little over six years since I've started pulmonary rehab, and I truly believe it's a part of what's been keeping my PAH stable in the last several years. Kinda hard to believe I went from no gym or sports as a kid/teen to working out a couple times a week at least! No, I am not running marathons or doing heavy weightlifting, but that is ok! Exercising at any capacity is beneficial, even if I can only do it a little at a time!

So after my PAH seemed to be stable for awhile, the next part of the equation was....what am I going to do with my life?? I couldn't teach. I knew I'd never go back to that. But I didn't know what else to do. Some days I had more energy than others. I'd have one day where I wish I could be at a job, to several days when I was thanking my lucky stars that I didn't have one. Then one day I got a call that started the ball rolling for me towards a direction I never thought about. I was asked if I'd consider starting a support group for PH patients in my area. At first, I was pretty terrified. I could handle being around kids, but to lead a group for adults??? I guess you could say that my shy background made the whole prospect a bit daunting for me! I really had to think about it. So, that's what I did. I spent a couple weeks thinking and praying and talking to my loved ones about the idea. I finally decided to go ahead! Yes, I was incredibly nervous about it, but I felt it was something I just HAD to do. How many years did I live with this disease by myself?? I just knew I had to at least give others the chance to not feel so alone after their diagnosis! 

In the 10 years since starting a support group in the Niagara Falls/Buffalo, NY area, I have really become involved with helping PH patients. I've had so many meetings, a large variety of topics and speakers, and phriends I care about very much. I have also become a big part of the online community for PHers, by being a PHA mentor, a chat leader, a blogger, and just a presence on Facebook. I had always wanted to teach in a classroom, but it took me awhile to realize that a "classroom" didn't have to be a place with 4 walls. It could be anywhere! I have even educated complete strangers during shopping trips about PH! And, in the 10 years since starting my support group, I have also learned to not be so shy with people. Sure, I can keep quiet sometimes, but more often than not, I put myself out there and let others know about this awful illness. Awareness is the key to so many answers, and I never know when one day I will talk to someone and they tell me they have PH, too!

My life with PAH is something I cannot change, and honestly, I think it has helped shape me to be the person I am today. Do I have days when I am angry about having it? Of course! I allow myself to have those angry days, or days of self-pity, but not for long. What good does that do me? I have learned to deal with this disease, and to cope the best I know how, and I have learned to help others going through the same thing. I have also not let PAH BE my entire life. I enjoy things like reading, painting glass, making jewelry, spending time with family and friends. In the last few years I have allowed myself to take on challenges I never thought I could do, because I always had that "cannnot" attitude with me. So I've gone on hikes, I've been on a jet ski, I took my first ever trip on an airplane! There are so many more things I've let myself try, even if I may not be able to do them again. I try my best not to let PAH take over my life, because if I did, I can't honestly say that I'd be living to the best of my ability!

PHighter Friday: Tia

Myself a few days ago at a place near where I live
called Deception Pass

How Long Have You Had PH? What medications are you on?

I was diagnosed with Severe Pulmonary Hypertension when I was 9 years old, although doctors believe that I have had it since birth. When I was diagnosed at age 9, a lot happened. I was told I wasn’t going to live because my heart was so enlarged. A PICC Line was put in and I was put on the medication Flolan. I was only on it for less than 3 months when my PICC Line fell out in the middle of the night. Doctors made a big ordeal that if I was off the medication for more than 24 hours I would die. It was well over 24 hours without it and I didn’t die. Doctors then realized I didn’t need it. At age 12 I was put on Tracleer (Bosentan) where I did amazing on it! That was almost 15 years ago. I am now on Tracleer (Bosentan), Revatio (Sildenafil), Prednisone, Pulmicort Inhaler, Foradil Inhaler, and Spiriva Inhaler.

What are you able to do that doctors said you couldn’t?

When I was born October 22, 1990 my parents were told I wouldn’t live and if I did I would be mentally challenged due to being born at 28 weeks. Well, guess what? That didn’t happen. I was raised by incredible parents who told me I am no different than anyone else and I can do anything I set my mind to. I was always determined to get good grades in school; I was never in any special education classes because of my “disability”. I did have an I.E.P. (Independent Education Program) that was only because of having my oxygen and if I were to get sick and be away from school they had a plan in action to where I wasn’t to get behind in school. I graduated on time, with my class in 2009. I was Senior Class President and graduated on the honor roll.

Last Hospitalization:

I have not been able to move forward with my education because I had a health set back the summer after I graduated in 2009 where I was in the hospital for a month and a half, due to some not so great decisions on my part. Not due to being immature but being forgetful and caught up in being a High School senior. I forgot to take my medications that are so very important! I was in the hospital where I had a PICC line put in once again but this time I was put on Remodulin. Doctors were talking Lung Transplant, my family and I then until May 2010 went through everything to prepare for transplant. Testing, doctor visits with the surgeon, transplant classes, etc. I then decided when they were prepared to list me I told them no I wasn’t ready. In August 2010 I received a new doctor. I asked to see if I could have the PICC Line taken out. I was tested to see what was more effective, the PICC Line medication or Oral PH treatments and in conclusion I was removed from infused medication in September 2010 and my PICC Line removed that November. I would love to go back when the time is willing, I’d like to become and Echocardiographer. By this time in my life I could probably do them on myself in my sleep! Haha

What does your day consist of with PH?

Some days consist of being with my 1 1/2 year old and 8 year old cousins. Being silly and having fun with them. A lot of the time I like to relax at home, being with family every chance I get and spending all the time I can with my boyfriend Mac when he isn't busy working. I am sort of a homebody. I like movies. whether sitting at home watching them or going and seeing one. i love to ea and having being trying to get more involved and learning to cook more meals. I like going on little adventures here and there. Too much activity and I get worn out easily.

Hardest part of life with PH:

The one thing that has gotten to me though having PH the last few years is the fact I don’t have a good friend support system. To be honest I don’t have any at all. I mean best friend or good girlfriends that I can pick up the phone and cry to, talk to and know they’ll be there for me. On my part it’s hard for me to be that sort of friend but it would be nice if I were to be able have that. It is hard, and has always been hard. There is a difference between having friends and the people you went to school with. I was only invited to a few birthday parties by girls I went to school with here and there. No, one besides a few people actually reached out and tried to be my friend, not just in school but outside of school as well. My mom tried to push me to make more friends but it was hard when not everything girls want to do I could just go and do with them like walking the mall, or going and watching the high school football games, where I would get cold and turn blue just sitting there for less than an hour. I am girl, I like to get pretty, do my hair, and makeup. I like to shop but only when I know I need something because I know the mall is not friendly to me with all that walking. I’m more laid back, I love food and to go out and eat. I love going and seeing movies. More so yes I am a homebody because I can just run all day. I get tired, my oxygen only has a certain time frame of hours it lasts, and I get headaches when I do too much. I sound lame that way but I would give to have friends who understand and tell me its okay.

What is your dating life like with PH/Oxygen?

Everyone on the PH site asks about dating, having kids, etc. Honestly I was like any other girl I had crushes, oh many crushes growing up. I never dated though; I had my one tiny middle school relationship. A slow dance at an after school dance turned into a little fling for a few months. Didn’t involve holding hands or kissing but I did get flowers on Valentine’s Day in 6^th Grade from him. Then you move on. I have only had 2 serious relationships in my life; the first was the summer before my junior year of high school. A guy friend from school added me on MySpace and that’s how my life went in a direction I thought it never would. I got caught up in the whole my first love. I don’t regret that time but I was young, naïve, immature and definitely had low self esteem. He was a nice guy, but it only lasted so long. At that age it’s hard to get someone to comprehend this is what your life will entail being with someone that has PH and oxygen. He didn’t get the magnitude of it and I wouldn’t want someone to at age 18 fresh out of high school. I had a small relationship the summer I got sick after I graduated; he was a nice guy but not the guy for me. I then had the next 4 years. I took those to myself. I learned to love myself and build my self esteem up more than it ever has been. I had a long time to learn what I wanted and didn’t want in a guy and out of a relationship. That was the best thing I could have ever done for myself. In February 2013 I met my boyfriend on an online dating website. We have been together for a year and a half. He is the sweetest, funniest, cutest tattooed guy to come into my life. Not only does he understand my life, he has done things and wants to continue to do things that change his life to have me in it. I will admit he knew a good amount of time before me that I was the one before I knew he was the one. Only in part I was scared, I hadn’t dated someone since after High School. He has never thought differently of me with having oxygen. He told me the first time he seen my picture he loved my smile. He has told me early on that he wants to take care of me, no matter what happens. He is the one I am going to marry someday, and have children with. He knows I can’t have children and he would never let me risk my health to be selfish because he wants kids. We both do want children one day but doing it the right way. I have always said I wanted to do Gestational Surrogacy. When the time comes we will but adoption is also an option as well for me.

 

That is some of my story; I still have a lot more of it to happen. I hope any young adult woman or man who reads this that has PH gets some glimmer of hope from it and it changes how they feel about their life. I have always told myself when people say “Your life must be hard?” I tell them “Someone out there has it much worse than I do.” It’s the truth. I have never been unhappy about my life. This is my life and I live it to the best of my ability.

If you would like to read more about Tia and her day to day life please make sure to visit her blog: In the Life of Tia.The PHight or Flight Project would like to thank Tia for sharing her incredible PH journey for PHighter Friday!

* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at phightagainstph@gmail.com. More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.