Neill grew up with haemophilia in the 1950s and 60s. It was a very different experience to that of people today. Limited treatments, hospital stays, leg braces – these were his ‘normal’.
However with the support of family, friends and health professionals, he has lived a full life – travelling, building a career and even playing in a band.
With more than seven decades of living with haemophilia, Neill talks about his childhood, navigating school and employment, the evolution of haemophilia care, and the impact of hepatitis C. He also discusses ageing with a bleeding disorder, the importance of support from family and his HTC, and the lessons he has learned along the way.
“Live life the way you want to live it. Travel within your limits. Just do it and don’t let the condition define you.”
Transcript:
Pauline: Hi I’m Pauline with Haemophilia Foundation Australia and today I’m speaking with Neill about his journey with haemophilia. So what was it like growing up with haemophilia?
Neill: It was interesting. I always said that it was worse for parents and siblings than it was for me.
I was diagnosed at a young age. Obviously there were bruises under my armpits where mother used to pick me up.
Pauline: From carrying you.
Neill: Yeah. And my uncle had haemophilia. He was severe haemophilia A. He died in 1941 at the age of 29. So my mother lived with my grandparents. So mum’s mother knew that there could be an issue when she saw the bruises when they were bathing me.
Anyway, I was diagnosed after that and we went through all the things that you normally do.
Pauline: They would have been having to give you treatment, so to infuse, etc.
Neill: Well, the treatment back then was pretty much just transfusions of whole blood.
Pauline: Oh!
Neill: It was administered through cut down exposed veins. Still got the scars.
Pauline: Oh my goodness, look at that.
Neill: Yeah. So that was a horrible memory.
Pauline: Yeah.
Neill: They would keep me in the children’s hospital and seeing them come up with this aluminium trolley with all these torture instruments on it. And I remember screaming. So yeah, that was pretty ordinary.
I reckon Mum and Dad’s job was to get me to hospital whenever I needed it.
Pauline: Yeah. So there was nothing. No treatment at home at all.
Neill: No!
Pauline: So I can see what you mean by saying how that would have impacted your family then. Your parents’ priority would have been getting you to hospital and kind of at the expense of your siblings then.
Neill: Yep.
Pauline: Did that impact your school and all of that as well?
Neill: Yeah, I had a very interrupted school life. We were lucky because we lived in the same street as the school. Mum could just wheel me down there in a pusher or a wheelchair, whatever the case may be.
And I had a teacher in grade two who used to carry me to the toilet on her back. She’d give me a piggyback to the toilet. And they’d set up a lounge thing in the classroom for me to sit on because my legs were in plaster casts and all that sort of stuff.
I’ve had great support. Actually my teacher’s son ended up marrying one of my cousins. So it became a family affair.
Pauline: There you go.
So I’m guessing you weren’t exactly hiding your haemophilia then. I can’t imagine that going unnoticed.
Neill: No, not at all. Never occurred to me. It was just the way it is.
I tried not to let haemophilia stop me doing what I wanted to do. So I was playing guitar in bands in the late 60s and early 70s.
Pauline: Oh, awesome.
Neill: And we used to play, I think, in the Largs Pier Hotel in Adelaide, played down there.
And there were times that just after the performance, I’d jump in the car and drive myself straight to the ED because I’d had an elbow or a knee that was blowing up. But that didn’t stop me doing anything. I just accepted that as part and parcel of it.
Building a career
Pauline: How would you say your haemophilia has impacted your life growing up in terms of maybe relationships, careers and those sorts of decisions that you might have made?
Neill: I was wearing calipers for about ten years up until 1969 when I left school.
Pauline: Calipers? Can you?
Neill: Yeah, they’re like leg braces.
I was determined not to wear them when I started work. So I got rid of them at the end of ’69 and started working in 1970.
That was at customs. And I tried for jobs other than that. But every time I mentioned I had haemophilia, they said, “Oh, well, we admire what you’re doing, but sorry, there’s no place here for you. Good luck.”
Pauline: Yeah. That’s so hard.
Neill: So I sat for the public service exam, passed that and got into customs.
I failed the medical and was given two weeks’ notice.
Pauline: Oh!
Neill: Dad was devastated, as was I, and he moved heaven and earth to get an appeal going through MPs, doctors, church ministers, everybody.
Pauline: Amazing.
Neill: Yeah, it was.
And I ended up having 40 years in the federal public service. So that was huge.
Pauline: There you go. So it was absolutely worth it.
But how amazing to have that support from your dad.
Neill: Oh yeah. It was incredible. It obviously transformed my whole life.
It’s made such a difference to be able to earn my own money, look after myself and not rely on government handouts. One of the things about it is you’ve trained this guy and now you’re going to pay him an invalid pension for the rest of his life. What’s the point?
Pauline: Yeah.
Neill: So it was good. It was good.
Changes in haemophilia treatment
Pauline: Can you tell me a bit about how your haemophilia treatment has changed over the years?
Neill: I spoke earlier about the direct blood transfusions into the cut down veins.
I was a pretty young age when mum gave the doctor’s consent to experiment with fresh frozen plasma on me, and that was in the 60s. I remember the side effects of that because they did gallons of this stuff they pumped into you. And that caused some issues.
So fresh frozen plasma then went to cryoprecipitate, which didn’t need as much volume. Factor concentrates. Recombinant Factor VIII. Self-infusing in the mid to late 70s.
Pauline: Yeah.
Neill: I remember the first time I did it. We were at Falls Creek. I’d never been there before. So you park down the bottom of the mountain and you catch a taxi, which is a four-wheel drive, up the mountain to the lodge.
It wasn’t long after we got married and I refused to pay the taxi fares, so we walked up the side of the mountain with our luggage. Dumb, I know.
And that’s the first time I had to self-infuse because my knee just blew up.
Pauline: Yeah.
Neill: Yeah, it was okay. I did it and got through it and that was fine.
So that was a huge deal breaker. It opened up all sorts of possibilities. Overseas travel, cruises, everything.
We sit here now with the Emicizumab, the fortnightly injection into the stomach. I don’t even have to use my veins, which are in poor condition.
It just put me into the moderate range. So it’s really, really good.
Hep C and liver health
Pauline: Did you want to have a chat to me about HIV, hep C and liver health in general?
Neill: Yes, I was lucky, very lucky to avoid HIV in the 80s, but not so much with hep C. I underwent a 12 month interferon treatment and cleared it. That was a tough gig, getting through that full 12 months. But I did, thank goodness, with the incredible support of work and also my wife. I wouldn’t have been able to do it without either of them.
I didn’t try to hide my haemophilia at all. As far as hep C’s concerned, my friends knew about it. Not all my friends, but the close friends knew about it, the family knew about it, although I didn’t tell mum. Mum and dad never knew that I had it because I knew what it would do to them.
I had a friend. He told me he used to go with a bunch of people camping and stuff, and he told one of the women in that group that I had hep C. She was a nurse, and she went right off. You know, “Don’t go near my kids. Why didn’t you tell us this? You’re around my kids.” And I thought, there you go. That’s why you tend to keep it to yourself.
Pauline: And even from a nurse as well.
Neill: I know. That’s what made it doubly bad because she should have understood. No, no idea. But that’s all behind me now. That’s all done.
Pauline: How’s your liver health now then?
Neill: Well, I have LFTs checked every year, and it’s the first marker I go to because I do enjoy a drink.
Pauline: Yeah.
Neill: Like I said, I’ve never let haemophilia get in the way of what I want to do, and having a drink or two is one of them. It is on my mind for obvious reasons. Any damage that was done to my liver with hep C corrected itself after I was cleared.
I’m probably walking a fine line at the moment, but the numbers are down. I mean, it’s no big deal with the numbers, so it’s not an issue now. And at 74, you know, I’ll just roll the dice.
Pauline: Might as well live life.
Neill: Yeah, definitely.
Ageing and future planning
Pauline: So have you been putting any plans in place for the future?
Neill: Yes. My wife and I are speaking about life after our current house and when’s the right time to pull that trigger. I’m concerned that we might leave it too late because none of us want to leave.
Pauline: Which is fair. You haven’t got any kids still at home, have you? Or anything like that?
Neill: No. All these aged care places are popping up everywhere. It’s independent living and all the rest of it, so we’ll be looking at that at some stage. But I’m not going to hurry to do it.
Pauline: No.
Neill: That’s about the only thing. We’ve got all our wills in place and it’s looked after, so it’s just a matter of what we’re going to do and when. When is the big question.
Pauline: Will proximity to your HTC be part of that decision or anything like that, or you’re not too concerned?
Neill: Not too concerned, but I wouldn’t want to be too far away. We’re about 11km out of the city, away from the HTC at the moment. I wouldn’t want to go too much further than that. I also like to try and stay within close proximity of where we’re living at the moment. Our two daughters all live within five minutes of each other, so that’s great and we want to keep that up.
A lifetime with the HTC
Pauline: Your HTC, do you feel like they’ve been, you say, an important part of your life? I take it they’ve been with you for the whole journey. Do you feel like you’ve had that same relationship the whole way through?
Neill: Yes. That’s another fortunate part of my life, the medical professional help I’ve had right through. All the haematologists were just brilliant. I mean, I used to have the mobile numbers of my haematologists, so I could call them at any hour if I had to go to the ED.
The staff in the HTC, I’ve seen the progression from being treated in the early days at the hospital to a dedicated HTC. So I’ve seen it all the way through, and they just do a fantastic job. I mean, they really are so dedicated.
It’s not just a job to them. It’s a way of life and they really are so supportive.
Pauline: It’s really nice being here at the conference because I’m getting to see firsthand that relationship and how caring they all are of the community. They’re checking in all the time, asking questions.
Neill: Oh yeah.
Pauline: They’ll give everyone a wave. It’s really nice.
Neill: Well, that’s one of the benefits of haemophilia, meeting people like this. Because without haemophilia I would have never met these people, and it’s just so humbling.
Neill’s message to others
Pauline: Are there any messages that you’d give to other people with haemophilia as they get older?
Neill: Live life the way you want to live it. Travel within your limits. Just do it and don’t let the condition define you.
Pauline: Thank you so much for your time today. I really appreciate it.
Neill: Thank you.
