Neil shares his experience of living with severe-presenting haemophilia A, and how he continues to live well as he gets older.
Neil has undergone multiple surgical procedures – joint replacements and fusions – and highlights the difference they have made in the quality of his life and his ability to stay active.
He also talks about the value of friendships, and how the annual men’s retreat (hosted by Haemophilia Foundation Victoria) gives everyone an opportunity to talk and get some weight off their shoulders.
Neil’s message to others is to focus on what you can do, rather than what you cannot. And to ‘try not to stress too much. That’s the worst thing for everything‘.
Thank you Neil for sharing your story. This video was filmed in Melbourne at the 2023 Australian Bleeding Disorders Conference.
Transcript:
Okay. So my name’s Neil. I’ve got haemophilia A. I’m 3%. But I’m a bit of an anomaly, I actually present as severe. So I’ve had spontaneous bleeds all my life. I’m on prophylaxis twice a week. Seems to be doing pretty well. I’m a mad keen fisherman. So I love my boat as well. And my two major passions also love playing guitar and collecting guitars very slowly. And I love walking my dog with my wife every morning. Which is my main fitness regime is walking – now that I can. It’s been a bit of an issue over the years with bad ankles and knees and hips. But now, I’ve been surgically repaired, and I’m walking really well. Generally my prophylaxis is holding me in pretty good stead.
But if I think I’m going to have a heavy day, where I may risk a bleed. I’ll try and organise it for that day that I’m treating. Which works out pretty well. I seem to be managing my arthritis more than my haemophilia.
Managing joint replacements and fusions
I’ve had great outcomes with joint replacements and fusions and things and, Yeah, I don’t think there’s any need to worry about if the future involves any surgical procedures, because, you know, it’s pretty safe and they do a pretty good job. So I don’t think a young person needs to worry about that, but it may enter their mind somewhere down the track. You know, if all of a sudden I’ve got to face a knee surgery or something, that it can be done as a normal person. You don’t have to stress about it. I’ve got one hip remaining that’s natural. So everything else knees are being done. Left hip’s been done. Both my ankles have been fused. But all have been a great success.
I was at the stage, before my first ankle fusion, that I would have had my ankle chopped off. It was that bad and I just could not walk on it and it was super painful, I couldn’t sleep. And it’s been magical. it’s a big recovery period, and like it was a good six months before you can really walk on it, probably 12 months before you get any confidence in it, but, but, yeah, they’ve all worked out really, really well.
I guess the most important thing is the rehab. We’re from the country, so we went to a local hospital for rehab, for a course of about a month it was, depending on how you’re going. I had a really good recovery this time. So it was just a four week period once a week. And then do your exercises at home. But that’s the most important thing. If you forget about anything else, rehab, do your exercises. Because a lot in joint surgery is getting movement and getting your muscle mass back, because you lose muscle mass really quickly. So exercise is really important and it can be a real drag, you know, but that’s really vital.
But, yeah, you do get very familiar with medical terms and, and blood results and things like that, which is another interesting sort of thing. The old generation, we were around hospital so much, and I was speaking to someone earlier that, we’ve done a couple of talks at Monash Hospital with the medical students in their first year, and we’re just rattling off these medical terms like they’re our nature, and we’ve had them come up, ‘Sorry. What do you mean by that? We haven’t even heard these words before.’
Attending men’s retreats
A group of a dozen or so of us, varying ages. That meet once a year, we go to a homestead or something like that, that will accommodate the lot of us. And it’s catered and we spend a few days together and nothing’s on the agenda or off the agenda. Whatever you like, if you don’t want to talk about something you don’t have to. We talk from footy to fishing to whatever we want to, you know, and, it’s just really good to sit with like minded people that have had similar journeys and, and yeah, you can have a whinge or you can do whatever you like it’s simply just a really nice get together and, you know, you can get a little weight off your shoulders too there’s generally somebody that’s been there before you. So you can give a little bit of advice. It’s just a really good bunch of guys
So I think over the years, like, there’s been a lot of challenges. And if we’ve found something that we really want to do, but it’s, it may be a bit risky to do it in the normal style. We usually try and find another way of doing it – adapted, or something like that – but you still get to enjoy it. And also, if you can’t do something, it’s not the end of the world because something always comes along, you know, you don’t have to jump into anything. You know, just see what comes along. So I think that’s the way to just get on with life. And, you know, try not to stress too much. It’s the worst thing for everything. That’s my tip.
