I am delighted to introduce Bek to you all. Bek is one of our valued PHA Australia members from NSW. I have known Bek for quite some time and she has become a close friend via the internet. She has the most wonderful personality and presence, that it is so catchy. I can be feeling a bit blue and Bek has the knack to be able to make me smile. She is also feisty and has the “never give up” attitude that has seen her through this far. Bek is a true fighter and she does have those down days like everyone else but she has the ability to pick herself up and get going again without a fuss. She writes as she speaks, from the heart and this is a look into Bek’s world through her own eyes. I am sure we all wish her well and hope to see her around PHA Australia.
Thank you Bek.
My Journey, By Bek
Where do you begin the story that changed your life and the way you feel about life?
I guess all I can really do is go back to where I remember it all beginning. It was back in 2003 that I first remember noticing that something was wrong. I was a 21yo woman who suddenly noticed that walking up the stairs of my then home with a basket of washing was making me feel like I couldn’t breathe, so bad that I actually had to stop half way. I guess hearing that now, for us is no real big deal because it’s often something we do every day. However back then, as I said, I was a young woman, not overly fit but still would expect to be able to walk up some stairs without feeling like I had to lay down to catch my breath.
I guess I let this go on for a month or so before actually ever saying anything to anyone, the fact that I felt as horrible as I did walking up a set of stairs was embarrassing and shameful. Like I said I was 21yo's, and it wasn’t long before I noticed that elderly women would be beating me up the stairs at work and looking in far better a state than I did when we reached the top.
It even got to a point where I would be asked out to lunch by friends at work, in my head I would picture where they were going to see both how far it was to walk and if there were any hills involved, from there I would either accept or decline.
As time went by it just seemed to get worse, to the point where bending down to pick something up off the floor would leave me gasping for air for a few seconds, even the simplest act like getting out of bed made me stop and take a minute to catch my breath. At this point I knew something just wasn’t right.
I started to talk to my family and friends, which led me to finally realise that hey maybe I’m not just unfit, maybe there could be something more to this. So I finally went to my local GP to ask him about my struggle with the simplest of tasks. I remember the first time I went to see him he asked if I was stressed in any way. At the time my job was putting a little bit of stress on me. So with this he decided to put me on Xanax to relax me. For some reason this didn't sit right with me. I didn’t feel stressed out enough for it to be having this much of an effect on me.
I was quite apprehensive about taking anti depressants because of this. So for a couple of days I took them and felt no different. I realise that it was probably going to take more than a couple of days but something inside of me said "this isn’t right, this isn’t right, what’s wrong". So I stopped taking them.
I was speaking to some girls at work about it, one of them suggested I go to a doctor she sees at a medical centre that was close to my work. I booked in straight away to see her. I can’t even remember how long it was before I saw her, but I do remember going there and telling her exactly the same thing I told my regular doctor. She did an ECG and the exhale test thing (not too sure what it’s called but this wouldn’t be the first one I would have). With the result of these she couldn’t see anything that would be causing the symptoms I had. So I was referred on to a lung specialist.
It was probably a few weeks before I was able to get in and see this lung specialist, finally my appointment day came. Now all I can remember was that he gave me another one of those exhale tests, charged me $50 for the pleasure and pretty much said, I need to lose weight, quit smoking and exercise. However he also said he would send me for a stress test.
I know now my reaction was not the best but I was so crushed when he gave me the lose weight and quit smoking spiel. I felt like he saw me and my age and came to the assumption that nothing serious could possibly be wrong and he just disregarded everything I was feeling. So with this I didn’t end up going for my stress test.
So there I was, feeling as bad as I ever had, still no idea what was going on. I think at this stage I pretty much gave up for a while and just tried to live with the fact that I needed to take little "breathers" in whatever I was doing.
That went on for a long while, until finally enough was enough. I went back to my local GP, advised him I was still struggling to breathe with the simplest of tasks, with this my GP sent me to a cardiologist at our local hospital. It must have been a good few months before I could get in to see him, but I guess I had been going on like this for so long another few months couldn’t hurt.
So I went to see my now cardiologist Prof Fitzpatrick, we went into his little room, I sat down and told him everything, from walking up the stairs and losing my breathe, how bending over made me dizzy and out of breathe and how I was tired A LOT (I have always been the nap kind of gal so this didn’t seem like a big deal). After I had finished he said to me he thinks its Pulmonary Hypertension and he wanted to send me for more tests, at this point I didn’t know what on earth it was but he didn’t seem to worried so nor was I, I was just SO relieved to have someone finally say to me they think there is a reason for all this.
So my appointment was finished and I had a list of tests I had to go and book in for, another month or so passed before I could book in to have all these done.
The month had passed and I remember lying there having my very first Echo talking about Big Brother with the lady who was doing it. As she was doing the Echo I remember her saying she believes that my cardiologist was right and that it was Pulmonary Hypertension. Still not knowing what this was I wasn’t at all worried. I had a few more tests that day but the Echo is really the only stand out one for me.
When I got home from my Echo my curiosity got the better of me, I jumped online and started to search Pulmonary Hypertension, this is when the reality of how serious this all was finally hit home. I’m sure as most of you know some of the documents on PH when you do a random search are quite confronting to say the very least.
It wasn’t until a week after I had my tests that I was booked in to go back and see Prof Fitzpatrick. Knowing what I had read on the internet, this must have been the slowest week of my life, I just needed to know exactly what all this meant.
The results were in and I was sitting in the little office again with my cardiologist. It was official; I was diagnosed with Primary Pulmonary Hypertension. Of course I knew all the things I had read on the internet, but whilst in that room with him I was so calm, I guess it was mixed emotions, knowing that there was a reason for why I was feeling the way I was, knowing that I could possibly get treatment to feel better, but then it came, he hit me with the "no children for you" line. Looking back on it I think this was the thing that crushed me most, the one thing in life I absolutely adored, taken away from me. Knowing you can actually have a baby but being told you can’t, destroyed me. I think this is what actually made me fall apart more than anything.
It was now time to get down to the nitty gritty, the treatment, and the hoops you have to jump through to actually qualify to get the treatment you need. My Right Heart Cath was not pleasant to say the least, 20 mins to get the cannula in. An ordeal in itself, but I remember saying to myself "this has to be done, this has to be done." What option did I have but to stay strong and just go through all the things most of us have to go through to get approved for this drug or the other?
Finally it was all over, I had started my treatment and actually started feeling better. I went back for my first check up and my pressures had dropped from 86 down to 56. I was feeling a lot better and so glad I had finally been diagnosed.
It took 2 whole years for me to be diagnosed, and when you read up on certain article's you realise just how lucky you are to actually be diagnosed at all. It’s scary to know some people go through all the symptoms we go through and never really know why.
Now a couple years after my diagnosis I’m feeling good, my pressures keep dropping and I’m walking further than I ever have, I thank God for the things I’m still able to do and pray to God for the things I’m not able to do.
I guess one thing about having PH is that not many people really know how you’re feeling, or if you try to talk to someone about it, chances are they have never heard of it. This for me has been the biggest challenge, how do you explain something that is so complex to someone who has never even heard about what you have without chewing their ear off for 2 hours? I guess awareness is the key, and with things like the Aussie PH website we are just going to keep moving forward in getting our stories heard, and giving people the tools and support they need through the tough times and also the little cheer group we all need through the good times too.