Category Archives: Pulmonary Hypertension

Rant

I’ve been trying to write a blog post since June. Mostly because I want you to know that Mia is stable; she’s feeling quite well.  The humidity of the Summer & September really had a terrible effect on her, we were so thankful when it was finally finished.  It’s an awful feeling when all you can do is sit by as the humidity relentlessly makes every single one of her PH symptoms go from bad to worse. I’m hoping with the end of summer that these feelings of anger and jealousy will go away as well. Yes, I admit it, I’ve felt that way. Sometimes I do feel sorry for myself as I grieve for the life that I thought we’d have. And yes, it is often hard to be on the outside looking in at everybody else out enjoying the warmth, the water, the beach and everything else that makes summer so great; ’cause we weren’t. I’m sure that I’ll feel differently time, but right now I don’t. Right now it just sucks. So, what were we doing? 

We were carrying Mia up the stairs to avoid the chest pains she suffers when she walks up the stairs by herself. And we trying to avoid the heart palpitations that were so thunderous I didn’t even have to be touching her skin to feel them. We were also trying to adjust and live thru my being diagnosed with BiPolar Disorder, PTSD, Anxiety & Chronic Depression. I now have 4 more reasons to hate PH; They say my diagnoses are a result of Mia’s diagnosis. And trust me, developing and living with a mental illness is no picnic for me or my family.  This summer was tough and it was only with help and support that we survived it at all. Truth is we were struggling in every single way possible; We Still Are. 

Hey, did you know just how much our mental health system sucks! Well it does.  It’s impossible to get anywhere; especially without a psychiatrist. Apparently there’s a shortage of them province wide. In York Region there’s not even a wait list to ask to be put on! Personally I think it’s horrendous but even more so, it’s dangerous (and more than a little scary)

On a brighter note: Mike deserves a Metal AND a Big Shiny Trophy for continuing to do literally everything to keep our heads above water. The most important thing to him is us; individually, as a couple and as a family. My man is amazing and he impresses me everyday.  I can truly say he’s my Hero, my Prince Charming & my White Knight all rolled into one.  Where would I be without My Mikey, he rescues me Daily and without him, I’d be nowhere. 

Oh!! And no one is sleeping around here either… like Ev-er! But on the positive side: We’ll look like real Zombies just in time for Halloween! 

So there’s your update. It’s not frilly or exciting… but it’s honest πŸ’œ

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Super Heros in ActionΒ 

I went to an assembly today! Yes I did! And what a very cool assembly it was… nooothing at all like the old – school assembly’s that we endured whilst in public school (🀐😴)!! N-no, this assembly was quite a different – not only was the LAST assembly of this school year — but the energy in the room was bouncing off the charts!! Why?!? Well now I’m not *positive* but I think the energy level miiiiiight have been ’cause these kids KNEW that some of their teachers AND their principal were gonna take a #PHpie in the face & they could-not-wait to witness it!! He he he!! Ummm… I can’t help but feel ‘somewhat’ (completely) responsible for that… 😬hehe whooops πŸ™ƒoh well… we’re gonna chock that one up so a #SorryNotSorry scenario aaaaaand then I’m not touching right now. K? 😘 AaaaanYwaY… SoOoOo Yes, you can imagine the atmosphere in the gym; It a was a little loud & the energy was definitely highly contagious! What a wonderful and encouraging sound. 

So why am I at an assembly? My job was to simply tell the Crossland Faculty that they literally Rock my World!! Yes, *I* got the honour of telling them that they ARE the absolutely best & I got to thank the them for being so Friggin’ Ah-maze-ing!!!! Right? All of them, each member of the Crossland Team are incredibly outstanding!!…. buuuuut I wanna call out one Team Member in Particular: Laurie Thomas. This woman is a machine & everything she does, she does so with a deep routed JOY & that Joy literally Ooozes out of her! – Laurie exemplifies what having the heart of a Super Hero looks like … and she shares it so lovingly with all of us!! Seriously, I haven’t met many like Ms. Thomas And SO many at Crossland. Thank you Mr. Flynn!! You & your team of Crossland faculty are the the most self-less, generous, wonderfully kind bunch of CrAZY people I’ve met … thank you for being your PHantasticly-AWEsome selves. Each of you have done your part in keeping our Mia safe and healthy this school year – But let’s face it… you know you gotta be a particular kind of CrAzY to jump on that kind Train, but you did… and Thank you!!!! There were many, MANY days I would have lost it if it weren’t for you guys xo

So you can imagine with this bunch, there was a lot of energy in the room was alive!! And so I’ll be quick… cause you’ll want watch this Video!! 
As The Berdan-Clan #PHamily… Thank you! ALL of YOU from the Faculty, to the Students & the Families from Crossland Public School… The Berdan-Clan have felt your Love & Positive Vibes. Thank you, each one of you, for bringing your loonies… & making a difference!! *Raises Hand* Oooo oo oo And check it OUT…!! Just like every good afternoon school special should; WE Learned Something Today!! Here’s our lesson: **One single Loonie may not add up to much, but when all our Loonies come together All those single Loonies really do make a Big difference!! A Huge Difference!! $1000.00 worth of Difference!! To the Pulmonary Hypertension Association of Canada; It means education for more people! It’s a HUGE deal – it could save lives! You see, Sometimes Super Heros don’t wear capes…. it just so happens, that in this case they kiiiiinda do 🌟Thank you ALL so incredibly much xo.


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 #SuperHeroes

#FearThePieForPH

#PHpie 

#PHaware ​

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‘Our Life in a NutShell’…

Please note I started writing this Blog on Tues. May 23rd. The date today is Sunday June 18th…. ya. Time flies when you’re having fun…  

‘Cause Baby You’re a FIREWORK!πŸ’₯

Yup, We set off Fireworks… aaaaand we did so on the Monday night of the busiest Long weekend I’ve ever had! It was excellent & I Loved Every Minute of it! Eeeeven tho I turned 40!! πŸ˜± It was the best birthday I’ve ever had. 

Aaaaaanyway… 

The point is that my #PHamily worked together to fill me up with so much Love & Support for my 40th Birthday, that I’m not even worried about this Cardio-Cath anymore. At the Moment, It’s Scheduled for *Thursday May 25th* tho that means  next to nothing as things can change in a blink of an eye & without much notice β›ˆ Haha

So why the Monday of the long weekend? Because you only LIVE once and life IS too Short. Aaaaand  We literally never know what this thing called l Life is gonna throw at’cha! We have to Live in the Now!! We choose to do the things that bring us closer together as a #PHamily – & as I’ve mentioned: ‘Blood Doesn’t Make You #PHamily’ ~ Being there with Love & Support does. Thank You for always being there & having our back, guys… You have no idea what an out of the blue text can do πŸ’₯ Its kinda like a Firework in a dreary sky… like somebody is *Always* there. 

Thank you – ThAnK YoU – THANK-You ARE our people XO

Here’s a snippet of our PHamily Fireworks…​​

Oh! And how did that Cardio-Cath go?! Absolutely Swimmingly! It came EARLY (Wed. May 24)  Aaaaaaand There were so many people offering a Ton of Prayers, Thoughts & Good Vibes on our behalf Aaaaand Realistically – I’m just glad Mia woke up! It feels like  that the dark looming cloud that has been hovering over our family since September has finally been released!! It’s #EuPHoric! 

Take a look at​ some pics… β€‹What’s next for th Berdan-Clan? I dunno… but I’m excited to find out! #PHightModeON. #KeepDASparkle

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Damn Site Changes πŸ˜‘

Dealing with unpredictability has never been my strong suit – it’s too much like asking me to have Patience. Ask anyone who knows me… Patience is a Virtue that I simply Do Not possess πŸ˜‰ I have to admit, I reeeeeally do like to know what I’m up against, and then come up with a plan aaaand then I wanted it all done and solved like, Yesterday! Even tho I may have only thought of it today… Make sense? I hope so 😬 Anyway, so having a kid with PH is a HUGE adjustment to My Life – haha. Yes, I know … of course it is for Mia too, but hey, please indulge me for a sec; this time we’re talking about me! 😘

Before I went back to school to become a Medical Aesthetician, I was the Activity Director in a Retirement Residence. Living by calendars, schedules and the clock was my 9-5 and Time was of the utmost importance – next to having a solid plan. Organizing people’s spare time and turning it into FUN … it’s just what I did! I often had Activities & Special Events planned well over a year in advance – What? It’s the only way I made sure that our Residents got exactly what I wanted – The Best! Of course I am able to Fly by the Seat of my Pants as well, and I am quite good at it… but living that way ALL the time? No Thanks – it’s too exhausting!

Anyway… back to the topic at hand. These Damn Site Changes take my kid from being a vibrant happy 10 year old who *almost* loves her life; to a child who is in so much pain it hurts to do ANYthing. Seriously. It hurts to move, and getting comfortable enough to actually get a the restful sleep she so desperately needs… is sometimes near impossible. How long does she feel this way? It’s unpredictable 😩 It’s been as long as 7 days and as short as 1. How long does a Site Last before it needs to be changed again? That’s unpredictable, too 😠.  It’s been as long as 5 weeks and as short as 2 days. But Regardless… it’s never long enough πŸ’” and My Life literally stops dead it it’s tracks for up to a week with very little to ZERO advanced notice. How am I supposed to plan ANYthing when living life as a PHamily is so Unpredictable *Sigh* 

I’m always looking for practical tips other PHers have had success with while using Remodulin via Sub Q. Tips for pain control, Site longevity, Coping Strategies for living with this horrid disease. Anything! I’m desperate to help comfort her any way I can. I feel so helpless. This one has been particularly hard. I wish she wasn’t allergic to Tagaderm and we could go back to the Cleo Sites. πŸ˜”

I ❀️ being a Mom! 

… Moooost of the Time πŸ˜‰

There’s always been this great debate, on Mother’s Day. It should be for the mother with the young kids, right? She should get to do whatever it is that she wants. It’s Mother’s Day. That happens what, never times a year? Even on Mother’s Day. Because let’s face it, We’re mothers. Period. I came across this ad by Sick Kids. It’s pretty powerful, and it made me cry. It made me cry because I have deep empathy for the women in this video because I have found myself in every single one of those situations. Pounding on my steering wheel in anger, crying in the shower (that one’s my favourite) Telling myself: I can do this. I can do this! Just so I can put a smile on my face and be there for my kids. Because I’m a mom.

I’m a mom. I’m not Super Mom, I’m not Wonder Woman… I’m not any better or even much different from any other mother who is trying her ass off to get it right, but feels like she’s failing… I’m still trying to raise self respecting kids who don’t expect everything to be handed to them on a silver platter just because one of them is sick and/or because she’s already lost so much! Every single mom out there knows what it’s like to have the secret thought that our kids are being a pint-sized assholes.  My kids are no different. It just so happens that one of them is also sick. I’m just like everyone else… trying to figure it out as I go along. Nobody ever told us what to expect… there’s is no manual… I wish the comparing would stop… ’cause trust me, we’ve all got shit. I love learning as I get older that we’re not in competition – and none of us have it all together! Aaaanyway… I digress… 

How do you take a day off from being a mom? You really can’t. So the debate is: Do you spend your “Day off” with your kid’s, or do you send them away and take a day off for you!? Well, that’s up to you… Personally, I do both. I want to see my mom, my kids want to see me. And my mother-in-law wants to see my husband. And as it should be! Moms don’t stop being moms just because their kids grow up and have kids, so we do all that and everyone is happy! So I say, do whatever the hell you want! Only you know you need to recharge and keep MOM-ing! Enjoy! 

Happy Mothers Day to Any Mom Anywhere who is trying her Ass to get it Right – EveryDay! 

At the Newmarket Fair… they had a blast… but holy crap that was exhausting! We always try Brave, but she always has to listen to her body. So… you know the ride where gravity pushes your back against the cage so you don’t fall off as the circle spins ’round & ’round? (I know, excellent description right!) I love that ride but the pressure on the lungs is a lot! Buuuut she was determined to try it 😬 So it’s just the four of us going on the ride, and I whispered to the operator: ‘If I ask you to stop this ride please stop this ride, OK?’ And he looked at me sideways and I said: ‘she’s got a lung condition and she’s trying to be brave’ He nodded in empathy and we got on. The ride started, I have my hand on her chest as it starts to spin, as the ride goes faster so does her heart. It feels like it’s thumping out of her chest!! And she says to me: ‘Mommy I need it to stop!” OK! “STOoOoOoOoP” I yell and Mike looks at me from across the ride and he motions: ‘we’re done?’ I nod: yes and he yells: “Stop the Ride! – Stop the Ride!! It slows down and eventually stops… She and I got off the ride Mike and Allie stayed on. We enjoyed listening to her sister giggle and her dad laugh while they enjoyed the ride, I know her heart was breaking inside; because mine was πŸ’” But! She told me she had the time of her life at the fair yesterday. She and Allie both did! And they both tried things that they didn’t think they could do.. they were Brave – Together! 🍻 Me? I went to bed at 5:30pm surprised I didn’t have a heart stack myself yesterday. Having a PHamily is exhausting. But it’s also so much fun.Allie’s 8th Mermaid Birthday Party

Motherhood: I love it! (Most of the Time!) πŸ˜‰

Inhale… (updated May 1&23)

#LatestUpdate: 

I had to make sure you knew this: #IAmReady for this #RightHeartCath AND #TheVibeIsRight. Talking to all of my Peeeple for this whooooole weekend, has helped me write this (INCLUDING you!): 

**Sick Kids Called today about 12 hours ago!!**

😱

🌸Thank you!!! πŸ’ž

So I say ~ ‘Rescheduled Again?’ Bring it!! That’s okay… she’s healthy this-time it’s rescheduled with #LESSTimeToWorry !! Buuuut with Enough Time to call all the #PrayerWarriors &/or those with #TimeToGetTogether. In other words: We’re Calling all OUR #PHamily who’s *Always* there for us through β˜”οΈ& 🌈= πŸ’žit’s #Priceless. 

Thank You  ~ The Berdan-Clan πŸ’πŸ’£

PS. Love you Guys!! Thank you for all you Love & Support & being the other 1/2 of my Brain! Ooooof course I also say that to MY mum all the time. πŸ€“#ItTakesAVillage, Right? Also: Miss Beans will not be in school tomorrow either…. She is ‘A Person’ & ‘She is every bit a Part of this #PHamily, as well. And she outright refused to stay home and go to school! And Good for her, right? She is ALWAYS there for her Sister. I’m sure she wouldn’t expect to be anywhere else. I Love that kid! She’s a Real Sweetheart – yet a BullDog at the same time… kiiiiiinda like her parents?πŸ€” : πŸ˜πŸ€—πŸ˜ˆπŸ˜³πŸ€£ aaaaaand maybe a few other #PHamily members I know 😘 xo

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May 1: Here’s the latest update: The week before the procedure, the Berdan household was desperately trying to keep sickness at bay – which wasn’t easy because there were many in Mia’s class who had come down with the gastric flu. Well, despite our efforts, Mia caught it and directly followed it with a cold, including a wee cough. I called the Cath-Clinic just to make sure we should still come. They suggested we should pack to stay the nite, and come by 8:30am, she would be assessed by the internist and Anaesthesiologist to see if we were all clear to proceed. Needless to say my nerves and anxiety made me feel quite sick leading up to the Cath, aaaaand I knew they’d stay that way until this stupid Cardio-Cath was finally done and she wakes up in recovery all safe and sound. SoOooOoo we arrived at Sick Kids and Mia was seen by a nurse, and a cardiac fellow and they said they thought she’d be good to go. Now that being said, they reiterated she could also still be sent home if the anesthesiologist isn’t comfortable. So still we waited. The internist came in and checked her out, then he went to confer with the Anaesthesiologist who said: ‘It’s better to do it another day when there’s no viral infection present at all.” So we got rescheduled for MAY 25th and went home. Basically the long and the short of it is that they COULD have done it with a slight residual viral infection left over, but what’s the point for two reasons: 1. Always the Risk with an the Anaesthetic  2. And They wouldn’t get the accurate pressure readings that they’re hoping for. I know it’s for the best, and I’m happy they’re being cautious… I’d never risk putting Mia in danger on purpose – I just want it to be all done. May 25 it is. 

Original Post:
 …then Exhale… Repeat. 

Breathing… It’s something that most of us do automatically with very little (if any) thought. Totally taking for granted that our next life sustaining breath of air will just be there; ready to be inhaled. But what if it wasn’t? How would that feel? I can imagine it might feel a bit like drowning, including the frantic panic of not having any air to breathe. No thanks, that’s friggin’ scary. I imagine that’s what untreated PH might feel like, or when a PHer gets sick… 

These are the things I think about when my world is silent. I don’t much like silence, nor letting my mind wander… But today I sat in my backyard in the sunshine. Aaaaand strangely I found myself alone… How Odd, yet completely lovely… and so here I sit, Alone. Just soaking up the warmth of the sun, drinking coffee and thinking…