Growing up with pulmonary hypertension and congenital heart disease was sometimes lonely, because there wasn't anyone around me who felt the same way I did physically. No one had to stay out of gym because they got too tired and too short of breath like I did on a constant basis. No one had to wear a holter monitor like the one time I had to in 4th grade. Talk about trying to play mum ball in class, all you could hear was the monitor thing making noise. Although I could always go to sports games, I wasn't able to participate in any type of sport, because again, it was just physically way too much for my body to handle. I didn't really regret any of this. I thought it was just me and my normal. I thought I was the only person out there who really dealt with this kind of thing, but that was ok.
I graduated high school, and started college. I worked, went to classes, and in the last year of college, started going out a lot more. I graduated with my education degree, and began working in the field of teaching. By the fall of 1997, I started teaching preschool, a job that I really loved doing. In 1999, I had moved out of my parents' home, down the street, had a boyfriend, started a master's degree, and was still partying most weekends. I did this all while still dealing with a lot of physical limitations. I still thought it was pretty normal, because heck, I grew up this way. No one else really realized how bad it could get sometimes. And I didn't usually complain.
April 19th, 2000 was the day my PCP ended my teaching career. I had been getting way too sick that year with bad respiratory ailments, and she told me I had to quit my job. While I was devastated at first, and felt so lost at the time, it was one of the best things for me. She used to feel so terrible for telling me to quit, but now she knows that if she hadn't, I might not be here.
Eventually a couple years later, my health still not doing that great, she referred me to the Cleveland Clinic in Ohio. On my first visit there, I was put on oxygen 24/7, and Coumadin, a blood thinner. The oxgyen was the first time I actually felt ashamed of my health. Who the hell wanted to be seen in public with that on?? I sure didn't. Despite all the health issues I dealt with, I had always been pretty shy and didn't consider myself very attractive for the longest time. Being on oxygen sure wasn't going to improve my self-image!! It was a very trying time for me. And rather depressing.
After several visits to Cleveland, I was put on Tracleer in October 2003. When I got the first package of it through Accredo, I saw a paper for a website for support of people living with PH. That website was for the Pulmonary Hypertension Association. I typed in the web address, and it was the most amazing site I'd ever seen.
There. Were. People. Like. Me.
I admit, I cried for several days reading posts on the message boards before I actually made my own post. I just couldn't believe that there were others out there who were short of breath most of the time, who were really tired most days, who felt they couldn't function sometimes. There were people who weren't able to work because of this disease. There were people getting lots of tests done, and people who were on a few different treatments. I was just so amazed, and sooo greatful that I had found a place where I could completely relate to others in regards to my health.
The PHA has introduced me to so many different people, in so many different places. I have become close to several people, and it's been such a great community. And yet, I almost feel like, while it's a blessing to be in a community where everyone understands what you are going through, it's also almost a curse. Maybe curse isn't the right word. Sometimes it's just so tragic to be a part of a group with health issues. Growing close to people you most likely may never meet is an extremely hard thing, especially when someone you are close to passes away.
I have had several phriends die in the close to 7 years I've been a part of PHA. On Sunday, June 14th at 6:30pm EST, I lost an extremely close phriend. A best friend. Mason came onto the boards and into the chatroom around the summer/fall of 2006. I remember one night in chat, after he was there for awhile, I asked him if he had any type of messenger so maybe we could chat sometime. He said yes, he had Yahoo, and ever since that moment, a wonderful friendship grew.
Mason had had a very rare type of PH called PVOD. He had been put on Flolan when he was initially diagnosed with PAH, but he wasn't getting any better from it. The doctors finally figured out he had PVOD, and the only cure for that was a lung transplant. He was listed, and had his transplant 3 years ago....June 19, 2006. He had a pretty good recovery, a few bumps in the road, but in the beginning, he was able to do quite a bit since being so suddenly sick before having the surgery. He started coming to the boards, and chatting with others in the evenings, and helping others who had PH, and particularly PVOD (which are far and few between). He definitely was a gem to have!
Mason and I shared September birthdays. His was exactly a week after mine, and he surprised me with a card and a little gift not too long after we had started chatting a lot on Yahoo. I thought it was really sweet! A week later, I sent him a card, and almost the exact same thing he had given me. I think he was a bit irritated because basically we broke even. LOL I just had wanted to show the same kindness he had shown me. That was Mason, though, thinking of others!
Christmastime came in 2006, and Mason and I exchanged gifts. I made him a tealight lamp, since I was making them at the time, and he really liked it. I also got him a gift card to Dick's Sporting Goods. He wasn't sure what the heck to get me, but he ended up getting a snowman music snowglobe. I thought it was really neat, especially since I like to keep anything snow related out during the winter. Another thoughtful gift!
Our birthdays came around a year later, and once again Mason sent a rather nice card, and money to use for something. I put it toward a George Foreman grill, which I can't stop using, and a Dirt Devil Kone vacuum. He was rather happy that he could help me get two useful things! I ended up giving him a CD he had wanted (I kept pretending I didn't have CDs yet to make it, since he kept asking about it lol), and some money, too.
Christmas 2008 made me realize just how special our friendship was. I had gotten him a gift card from Barnes & Noble that I customized with Mittens' picture, since I knew he had been wanting to buy some books. But his gift got me crying. He had bought a pair of turtledoves, and he gave me one. He wrote in his card that the doves were a sign of our lifelong friendship, and that when we looked at our doves, we would think of each other. I couldn't believe it. It was the most thoughtful and sweet gift I had ever gotten. To think this was coming from a 20yr old young man was unbelieveable.....but then again, Mason was no ordinary 20yr old. It's why I shed tears at this wonderful gift, until I opened the other half of the gift. Chocolates!! That got me smiling for sure!!
I think in the last several months of Mason's short life were the most endearing to me. Somehow along the way, we started calling each other nicknames. He became my hb (honey buns), I became his sc (sweetie cakes), and every once in awhile we'd also use cw (cutsie wootsie....I made that one up lol). Mason became so important to me. I'd start my day with him in the mornings, and he was usually the last person I said goodnight to. I'd talk to him about 500 times in between it felt like. He was a best friend, we talked and laughed about everything. We used to play games together, share videos with each other, just random stuff. I didn't feel my day was complete without talking to him. When I went away to visit Lisa and her new son back in March/April, Mason had just gotten home from yet another hospital stay. I felt so relieved, because I couldn't imagine not talking to him for the week that I was down visiting in NC! I had brought my laptop with me, and even though I was having fun with my family, I STILL made time to talk to Mason. I have a text from him while on the road down to my sister's, and he had asked me how long I was going to be there for. When I said a week, he answered, "OMG, a whole week without my sc???" It was just things like that that made me realize we really did have a special friendship.
This week has been the suckiest week ever. I did nothing but cry the first several days. When I wasn't crying, I was just sad. I thought about him constantly, I kept talking to him to ask if he was ok. It didn't dawn on me Tuesday morning, not even 5 minutes after I got up, that Mason WAS telling me he was ok through a song. I had heard it the day before while driving around after a doc's appt. I kept asking for a sign to let me know if he was ok, and the song would be on. Tuesday morning, I thought I was ok, but started crying immediately before even putting my contacts in. I again asked Mason to let me know he was ok, turned on the radio and 2 seconds later, Halo by Beyonce was playing. In my heart of hearts, I knew Mason was trying to tell me that he indeed was alright now. And while it still really really hurts.....while I'm still wishing one of my best friends was still here with me...with us, his phamily....I know that Mason is breathing freely now. I know he's no longer suffering, he's no longer in pain.
I never got to meet Mason, and that has really hurt so much. I know I will one day, whenever God is ready for me. I know I'll meet Mason when we are both happier and healthier and able to do just about anything we darn well please. I just wish I had a chance to actually meet him face to face, to hug my phriend I loved so much, to share laughter together. It wasn't meant to be though, and I will one day get over that (I hope).
I am thankful that I did get to know such a wonderful and caring person in the last three years. I can't believe that short of time seems like forever to me. I will never forget his kindness, his humor and quick wit, and the times we did spend together chatting away and getting to know one another. Mason, I know you are up there smiling down on us. Please know how much you were loved, and how much you are missed. I know I will never forget you as long as I live.