I need your help – again… 😬 I was thinking (a Dangerous Pastime, I know)… we’re hoping for World Awareness for all 25 million PH patients worldwide, right? Yes, yes… I know, I know… Perhaps we are already #PHaware, and don’t have a single cent that we’re able donate right now (that’s totally ok, me neither) and we’re tired of hearing PH facts or listening to me cry (me too!) – I get it, trust me, Quite Frankly I’m tired of the whole damn thing, too! But… I can’t give up, because my kid’s life is too important to me… So here’s what I’m thinking: I’m thinking… PH is STILL a Rare, Progressive, Invisible, & pretty much Unheard of disease. What if each of us personally shared Mia’s story along with her YouTube link introducing the #PHpie Challenge … you know a real 1-1 conversation or FB messenger or whatever our favourite way to effectively communicate is, and What if we directly contacted at least 1 friend who is outside of our own close circle… and maybe even outside of our comfort zone… maaaaybe even 2 friends, one of whom lives in an entirely different country!! What if we all personally asked a few of our friends to help us raise awareness for Pulmonary Hypertension. Maybe if we share what the heck this PH disease is with someone who has not already been saturated with more PH info. than they can shake a stick at and doesn’t want to hear another single word about it! … Maybe… just maybe they might just want to take the challenge themselves or make their own #FearThePieForPH or #PHpie Challenge video, and maybe they could ask people to donate to the Pulmonary Hypertension Association of their own country. Maybe it just might save a life! Maybe that life might belong to a person who knows nothing of PH yet have been wondering what the heck is going on with their own health, or are trying desperately to figure out why a loved ones health seems to be deteriorating so quickly. The journey to discover one has PH is HARD and stressful, lonely, confusing at is scary as hell. What if just maybe Mia’s story can bring awareness or perhaps even a tiny bit of comfort to a person who finds themselves without answers – and might even get someone who is unknowingly suffering with PH a proper diagnosis and on a treatment that can slow the rapid progression of this disease – cause without treatment, a person with PH will live less than 3 years! Often PH patients have been thru so many Doctors who don’t even know what Pulmonary Hypertension is, let alone how to look for it. I don’t want anyone to suffer, it’s horrible. No One should Struggle to Breathe.
Am I off my Rocker, or could this work? What’cha think? Can we all take a #PHpie for the Team Mia and make our PHamily even bigger!? I wanna thank you in advance for any awareness you may bring to another on May 5th (Go Purple!) and for all the awareness you have already spread on behalf of Mia and The Berdan-Clan. Your support is precious, I’ve been talking to a lot of PHmoms who would give their left arm for the support system that we have! I hate to ask… But do we have it in us to do it again?
I’ll even try to make it as easy as possible to share Mia’s story with friends… The following is our journey as I tried to explain it to new PH mom who asked me to share Mia’s story. Her 5 year old daughter was diagnosed with IPAH 2 weeks ago:
OK here’s our story: Mia has never really been a sportsy person, she’s more of an artsy person. She’s a singer, dancer, actress – a very creative individual. So when she started losing interest in those things, and when she struggled with her breathing to the point where it was difficult to walk across the stage (At competition) and belt out out her lines as she played ‘Molly’ in her theatre groups production of ‘Annie’, we started to worry. She always seemed to need to take so many breaks while walking, I thought she was being lazy!! All she ever wanted to do was be inside her iPod ~ as if shutting out the world. She didn’t want to do anything… and she looked greyish, thin and kinda unhealthy in general. I describe it as Mia was losing the Sparkle that made Mia who she is. I asked my family GP (#1) for a referral to a Pediatrician (#2); who sent us to the Allergy & Asthma clinic (#3) who diagnosed her with Asthma, gave her puffers and sent us along our merry way. That was May 2016. By July, she could no longer walk up the stairs, she would faint for no reason, she passed out ontop of me in Chapters bookstore. She passed out and knocked her noggin off the car in our driveway. She started seizing, and waking up with chest pains in the middle of the night. Asthma? Ummmm no! I don’t think so. I called the asthma clinic at our hospital, explained what was happening and I was told they that the doctor wasn’t available. I said “Good! She doesn’t have asthma! I don’t want to see the asthma doctor!” So I asked if I was going to be coming in through emerge in the middle of the night when my daughter wakes up seizing again, or they could give us an appointment now and we’ll see whoever is on shift this afternoon. What time was our appointment? 2:30! Thankfully we didn’t wait long and after listening to our story, Dr. Jasvinder Dhillon (#4) immediately had her do her best to across the length of the room. She was able to do this for all of 3 minutes before she couldn’t anymore and then he put a stethoscope to her chest. Next thing I know, she’s in x-ray and she’s having an EKG and they’re ordering an urgent echocardiogram for the next day. The X-ray showed she had an unexplained shadow on her lung. The prescription pad for that echocardiogram said: Rule out Pulmonary Hypertension. What the heck is Pulmonary Hypertension? The moment I got home from seeing Dr, Dhillon ~ I googled it. All I saw were the words: “Heart/Lung transplant, Fatal and No Cure”. That was enough for me, I turned off the computer and cried uncontrollably for hours – I tried not to freak out or jump to any conclusions all while trying desperately to convince myself that there was no way that our Mia had PH… NO WAY! We went for that echocardiogram the next day, and Dr. Singla (#5) confirmed our worst fear: He suspects Pulmonary Hypertension. (What?!? NOOOoOoOOo!! No no no no NO!! This can NOT happen to us, we’ve had enough in his life!) We referred to Sick Kids Hospital and she endured what felt like 1 trillion tests – the poor kid was put through hell, literally! Poked and prodded at for hours on end for 2 days in a row. She wasn’t able to have the Right Heart Catheterization (the golden standard test to definitively confirm PH. All PH patients have at leasy one to get an accurate pressure reading to prescribe the meds) Buuuuut because with her PH came a Central Sleep Apnea – (isn’t that a fun little extra added bonus to an already horrible diagnosis – YAY!! That’s just faaaaaantastic!) We were told that if she was given the Right Heart Catheterization, there was a 2% chance that she would make it off the table alive. So Dr. Humpl (#6) took a shot in the ‘grey’ and put her on a med called ‘Remodulin‘ via Sub Q pump. I’m happy to say that NOW Mia’s PH symptoms are stable, and thanks to the Remodulin… that central sleep apnea is gone! Hooray! Good News!
So how did all that happen? … And when? Because after Mia was born, the Nurses checked her over thoroughly and we were told that a pinhole and a small murmur were detected in her heart. She was followed by a cardiologist every few years from 3 days old until 7 years old – she was declared as having a normal healthy heart on October 24, 2013! Mia developing PH so quickly and out of nowhere is about as likely as my sister being killed in a car accident on a deserted highway! And that happened too, so… idk wtf is going on – but I do know that PH is progressive, it is life threatening and PH patients all over the world a Cure. Would you help us?
In the meantime, here are some shots of some of my PHriends and PHamily taking the #PHpie challenge, in addition to a few pictures of how we engaged the help and support of the ALWAYS AWESOME Sick Kids Staff. Enjoy!