Friday, 3 March 2017

Coming Up for Air: Our Story of Pulmonary Arterial Hypertension

Where does one start? From the beginning usually. I don't think I will, though.


I start on a drizzly evening in 1998, when meeting back at the community centre after Dad's football training. I noticed straight away dad wasn't himself, but like most, he didn't want to show that he was in pain. The drive home seemed like a struggle yet it was only a short drive. I knew then I needed to call for help, but dad was stubborn and continued to block me. Fortunately, my reflexes at 14 were pretty good and dad was getting weak at that moment. I managed to ring the doc on call but he wouldn't come to the house and dad agreed to go to his surgery. It was another short drive but it felt like a lifetime because I thought he was going to black out and end up in a ditch, me with my hand on the handbrake. By the time we reached the doctor's surgery dad could barely walk, I asked for help but it was me alone that held my dad's weight with all my might. Dad had a heart attack; I knew it I didn't need to be told. It was the first of many to come over the years and now Mum was making a long journey back from a funeral in Donegal not knowing how bad dad was.

With each heart attack came the recovery, it was always Mum, Dad and I forever fighting for one another. Strict diets came in, along with sneaky cream buns smuggled through my school bag. Exercising was great craic when dad joined cardiac rehab, such a wonderful team they were. Dad, as always, recovered thanks to his positive attitude and grace.

The tough part in a long road was the triple bypass, I knew dad could do it and beat all odds. As far as I was concerned Dad is invincible! Yep, I was right Dad rocked that surgery and had the scars to prove it. Dad took longer to recover this time but again the three amigos (being mum, dad and me) did it together. Dad even got back onto the football pitch. It was dad's passion and even though never to be at 100% fitness again he still showed immense skill and determination at 60 weaving through the opposition. Ahhh the opposition, that brings me to the dark void that hit us in 2012.

Dad's fitness levels started to deteriorate around this time. Breathlessness kicked in and looked like asthma or allergies. Dad began fighting for breath but we didn't know the full extent at this stage. We all flagged it, something just wasn't right. Fast forward a year and Dad is under a new consultant and not for the heart but for the lungs. Dad has been diagnosed with Pulmonary Hypertension. The seriousness wasn't really brought home to us, the consultant was very blasé. We started to doubt the integrity of this doctor in 2015 when dad was on portable oxygen and walking became difficult. I asked the consultant one question only to be ignored, then the blowouts began. Dad was subsequently admitted for more tests and then discharged around a week and a half later and told no change. Yes, there was a change we could see it, hear it, feel it but no one listened. Enough was enough! We went back to dad's original consultant for his heart, who took us seriously and could see that we needed to fight. Unfortunately, the news came that dad was dying, and given a year. This is when we found out there is only one unit for Pulmonary Hypertension in the whole of Ireland and he was going to get us there. He kept his promise we got there in December 2015. I was angry that it took years for anyone to mention the unit and for dad to be referred. I blame the consultant who was so blasé with my dad. How can you play with someone's life like that?!

Seeing my dad struggle to come up for air for so long was heartbreaking there just had to be a way. Dad was now also in a wheelchair with a whole host of other problems. Dad's heart was getting weaker and fighting with itself to carry on. The team were amazing they followed through on everything they said. We kind felt like we could breathe and that there was a chance ahead of us, for us all to come up for air.

The timeline of a year was shortened to two months....this ate me up and consumed me, this couldn't be possible. My dad was invincible, he had to have one last superpower to get through this.

New drugs were introduced, these saved the day and also brought us all to the brink of insanity. The mediation had to be inhaled every 3 hours from 7 am to 10 pm. This was no easy feat as it was also the preparation and cleaning of it all and the other zillion drugs that had to be taken. The road was long, it was hard but dad always made things easy. Dad forever laid back, determined, kind and graceful about it all.

The 2 months passed and dad still with us, well...see told you he was invincible.

We never let the timeline in on us, yes it was in the back of our minds it was spoken about in the most humorous ways imaginable by us. We weren't going to mope around. As dad would always say "Life is for the living" and lived it we did.

Trying to gasp for breath every living moment has to be a living nightmare. My only personal experiences of it are 3 asthma attacks that made me feel that the devil was inside me trying to choke me. I can't even begin to explain how my dad felt but I saw it on his face, that question of "is this my last?".

7 months went by and the fight was still on, and such an epic fight this was. We were told that dad would be assessed for a lung transplant. Initially, a few years previous we were told without a doubt dad would not survive one and would die on the table because of his heart conditions so this was unexpected. To be honest it was cruel. The hope that this brought was a mountain on our hearts. The answer was an astounding NO. The anger and disappointment were something I never felt before, not for myself but for the cruel act of giving false hope to my dad. My mum as always was the pillar of strength and reasoning throughout it all.

We all rallied and all hands were on deck to keep the ship afloat and to keep the air going. Mum, dad, daughter, son in law and granddaughter. We knew the drill inside out, we knew the regime on how to keep the sails going.

Things took a downward spiral, it was fight after fight with the medical teams, the local teams, and general practitioners, it was never ending and exhausting but never the less it was always worth the fight.

Dad went into hospital November 2016 which was 1 year on from the initial timeline. He knew, we knew but we carried on as if everything was the same. The 30th of November and we snuck his Angel (Lillibug) into see him for her birthday, as she was turning 5. She knew her grandaddy inside out they were peas in a pod, she rode shotgun on the wheelchair any chance she would get, proud as punch on his lap. Unfortunately, that was last time she would see him.

On the 1st of December at 9.30am dad passed away peacefully in my arms.


The sails are down and the air has stood still. The battle was epic. The fighter a gladiator and he beat all the odds. The legacy my father has left will always live on in the good he did for others and the love he showed. He lived life and followed his heart with every last breath.

Having pulmonary arterial hypertension (PAH) means that you have high blood pressure in the arteries that go from your heart to your lungs, visit www.pulmonaryhypertension.ie for more info or to donate.

10 comments:

  1. Well done & thank you for sharing. Very brave of you & no doubt very difficult. You're dad is looking upon you, your mum, your hubby & Lillibug proudly :-) x

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    1. Thank you for your kind words. It was tough to tell, but I think dad's story deserved to be told to show what a fighter he was until the end xx

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  2. What a brave man your Dad was. I can't believe how blasé that Consultant was. I'm very sorry for your loss xx

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    1. He really was Siobhan in so many ways. We had more problems with consultants that I could start a book on that experience alone! Thank you x

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  3. So sorry for your loss, your words had me in tears. Such a proud daughter to an amazing father. X

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  4. I am so sorry for your loss, it was tough road for you all. Thank you for sharing xx

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    1. It felt good to write about dad, thank you x

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  5. Such a sad time Danielle but you told your dad's story beautifully, I'm sure he'd be very proud. Take care

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