Where to begin…hard to remember life before PH day.
I was always an active person, loved running, loved football and took the ability to surpass other people’s fitness for granted.
I guess I had it all, great kids and wife a baby only just on the way, great job and prospects running the operating theatres in Preston England, and an active lifestyle.
Then after a lay off after a sporting injury I sated to try and run again. And I couldn’t. Literally couldn’t run 50 meters without feeling like my chest was caving in.
I passed this off as being unfit and enjoying too many pizzas and beer, but when it was commented on by a member of my team on how unfit I was after walking up stairs and being breathless to the point I couldn’t talk, something triggered in my head and I went to see my GP. I thought it was Asthma or Hay fever-but was surprised to be referred to cardiology for Echocardiograms and CTs-but still I wasn’t really bothered-indestructible.
Then I got the call-URGENT CT and my knees buckled a bit. Still went in with good humour-until I got the results-my consultant sat down me down with my wife and proceeded to talk about how my heart was enlarged due to significant pressures in my lungs and all went hazy. I can’t remember before that conversation now-1830 on the 22/8/13 In Chorley Hospital.
Although I am medically experienced, I had never heard of Pulmonary Hypertension and there was little information in the hospital I was in, so I did what any 21st century boy would do, and I asked DR Google and that’s when it all went black.
All I could think was ‘I’m going to die and leave my wife and kids without a dad and husband’, I had never been so scared and unpowered in my life- I was a manager of people-I dictated the rules-not this time
Then it suddenly became worse-
‘David-you need to have HIV tests due to your age, you have Tattoos and this is an indicator for HIV’ I couldn’t breathe, it is hard enough to worry about leaving family, but to leave them and also condemn them to that crippled me. I couldn’t talk for the week that I waited for the all clear.
This was by far the worst experience of my life.
To be fair the hospital care over the next 2 weeks was good-I was looked after by a great team both in Preston where I was transferred to and then to Sheffield (which is my specialist centre). I was told I had idiopathic PAH although I can directly link onset to running a Half marathon then flying to Australia a couple of days after-I was never the same after that.
I experienced many procedures which previously as a theatre practitioner had imposed on other patients, and came out of it a better practitioner.
Following discharge started life again, having to get used to boxes of drugs to organize a month and become regimented and there I dwelled occasionally going to clinics where I would be sat in-between patients 3x my age. I was too scared to move, for months I counted and limited every step and breath as if it was my last and let myself be overcome by a black shadow, I arranged life insurance, redirected my pension thinking everyday was my last, not wanting to spend money on haircuts etc. as what was the point. Immersed myself in my PS3 and just sat for what seemed like months. I couldn’t sleep, I’d dream that I was having cardiac episodes or dying so vivid that I was screaming in my sleep- I really feel bad for how little I spoke to my wife and kids although I do know that I was battling depression.
In addition to this I was having chest pains and palpitations which screwed my nights up. I’d just sit every night watching Predator over and over. It later turned out to be reflux which yet another tablet would resolve-but goes to show-not every bump and ache would be due to my heart.
From that point on I slowly picked myself up-started to go back to work, first 2 days a week, then 3, then 4.
At each stage I was feeling exhausted and worried that I couldn’t go back to my old job which was stressful, demanded long hours and fast paced, but the hours worked started to get longer and I was getting more comfortable racing from meeting to meeting, but it was still at the back of my mind, the shadow that constantly required me to count my steps-to be worried at every flight of stairs I encountered-just in case I couldn’t climb them and id be reminded and I’d start from the beginning again.
My real turning point came at my 9 month appointment at Sheffield. The 6 minute shuttle run. On diagnosis I could only make 800m-that haunted me. This time I focused and I nailed it, I could have done more-I almost cried as I had beaten my demon (but always in my mind a voice said ‘why are you happy? You have only jogged 1000m you were running half marathons)
The next steps were to start going to the gym again before each step I was so nervous-this could set me back-I don’t want to be reminded that I was limited, but I didn’t want not to know either. The only way I’d be happy was to confront it head on-I was back, feeling mentally and physically strong and fighting the entire time-IPAH pushed to the back of my head-always trying to escape but it push it back again.-id wake up knowing I was fighting and went to sleep ready to recharge.
I started off slow and for 10 minutes-I limited myself-I could have done more but was too scared. Then one of the most influential men post IPAH challenged me. MR Saba from Blackpool hospital said-we’ll never know how bad it is unless you push it. Game on!! running increased to 30-40 mins-granted it was half the speed that I was used to but I could run-without breathlessness and other associated symptoms, and gradually the speed has risen, not by a lot but it has, since then I’ve lost loads of weight and I go to the gym 3 times a week for at least 2 hours at a time. I now do interval training and have pushed myself as hard as I ever had done.
Meeting people on line in forums was a life changer too.
People with my condition alive after 20+ years and not the 2-3 that Dr Google had suggested?
Also that I was far fitter than many people on the forums-I was working 50 hours a week-intense work, gymming and coming home to 4 kids and not once was I out of breath or symptomatic, I don’t need O2 or may drugs, just 25 sildenafil, and Warfarin.
I don’t take this for granted now. I have seen how this has affected some people physically and mentally and I’m not going to be the nest victim. It has to beat me and I don’t get beat. That’s not to say I’m arrogant-this condition and the days after diagnosis still haunt me and the black cloud still lingers, I occasionally tear up and want to cry, and I know that I’m still hard to get talking and prefer to be out of crowds, but I’ve accepted this challenge-it’s a long one, but a long fight is better than 2-3 years.
I’ve recently put my name down for a charity 5k run for PHA-my next challenge which scares the bejeezers out of me but again, I have to do it, and I’ll run through the fear.
My consultants have called me remarkable and have been discharged to yearly Sheffield appointments, so all in all not the best thing to happen to me, but I’m still alive.
There’s no point saying avoid google, because either you or a loved one will.
Just accept it and move with it. Don’t get caught up in how it affects others; get caught up in how it affects you. Be inspired by these PHighters by all means but one size doesn’t fit all, push yourself past every boundary-no matter how small they may seem to ‘normal people’ or how you would have been before. Just get out and do it and fight the fear otherwise you’ll be enveloped by the worst thing possible. FEAR.
I couldn’t have done this without my wife and 4 girls. They are my power, I have very little family around me, and although I know it’s been really hard for her to really accept and understand how black it was inside my head and how hopeless life seemed even when amazing events like my daughter Lorien was born, she reminded me that life is never hopeless if you don’t lose hope.
Update: David completed a 5k run in 36 minutes after his blog submission. Way to go, David!