 I've had about 25% lung function then anyway, so at the time I was feeling good because that was a good day for me. 25% was a good day. Yeah. Wow. So what was a bad day? A bad day was about 17%. Oh, wow. So I was measuring myself. Sorry, what do you have now? 92%. Wow. This time last year, Tor was, he thought he was in the last chapter of his life. The book was about to close and today, he hadn't ridden quite a push bike for just over 10 years. Yep. Today we're on a glorious Melbourne day going for a bike ride. Tor, tell me what's it like to be riding your bike? So I'm at a Mara Cycles Cafe and today I'm going to introduce you to a man who's got quite an unbelievable and inspirational story to share. Before we get into this video, if you've just landed here, this is where I do cycling videos, both inspirational and entertaining. And I do love a deep dive road bike review. So if that sounds up your alley, consider subscribing below. So in this video, I'm introducing you to a man by the name of Tor Bloomfield. Now Tor suffers from a genetic life threatening disorder called cystic fibrosis, which essentially affects the lungs and also the digestive system. Now the average age for somebody that lives with cystic fibrosis is around about 40, but it's constantly increasing thanks to modern medicine. Now Tor is around 40 years of age and this time last year, he thought he was in the final chapter of his life. The book was about to close. In fact, he could barely tie his shoelaces without being completely exhausted. And today we're going to go for a ride together. So Tor has got quite an unbelievable story to share, which I'm going to leave it up to him to do. But just know this, he's just returned from the transplant games, supporting two gold medals, one for cycling. So this right here, my friends, is going to be a bloody good story. So I think I'll just see him. Here he comes now. Look at this. How are you mate? Looking good. How are you? What's this? What's going on here? You're wearing the... Oh look at that. Keep under wraps. Oh my goodness. Legendary. Too gold. Too gold. Not one. Two. One for cycling. What was the other one for? This was double tendon bowling. And this one was the Cycling 5K Tom trial event. Yeah, okay. Held at the Australian Transplant Games. Right. So... How does it feel to have been wearing those around your neck? I feel like Mr. T. The white version. So hopefully in a year's time at the World Transplant Games, my cycling is improved. Yeah. And I have my chest. And it's just a massive amount of gold flowing from my chest. Yeah, nice. Going for Australia as well. Nice on that. Well, should we go for a ride and chat about it some more? That'd be good, Ken. Let's go. Oh no. Thank you. Today we're on a glorious Melbourne day going for a bike ride. Tell me what's it like to be riding your bike? Um... I did think about the answer to this question, and it really stuck to put it into words and still express the emotion that it gives me. It always brings me to tears to be able to ride. And to be doing this and feel breathless in a good way instead of panicking that I'm going to die is all that I can put into words. And, you know, this is a beautiful day. And sometimes I actually feel like I'm in heaven and I did die on the day. And every day since the operation, it's just been one beautiful day after the next. So it's as pleasant as I can put it for you. That's fantastic, mate. It's a bloody inspirational stuff. Love it. Thank you. Sorry, I have to get the sunnies right. So, mate, how good is it to be out there riding? On a scale of 1 to 10, riding on a Friday, beautiful weather, a little cool breeze with a good mate, having a laugh, someone that can push me a little harder. Sorry about that. It's okay, I didn't mind. My legs are feeling it now. But it's been awesome. Yeah, right. That's awesome. I enjoyed it too, mate. And we're going to do it next Friday? Yeah, bloody eyes. All right, bring it on. Well, affecting me with cystic fibrosis, there's different levels of illnesses within cystic fibrosis. So some people could be partially affected. Other people can be severely affected by cystic fibrosis. And by that, I mean the lungs are degenerating on a much faster rate, in which case they're going to die quicker, obviously. But on a daily basis, the mucus builds up in the lungs. So it's constantly like having... Blocking the airways. Blocking your airways. And basically, it chokes you from the inside. So you suffocate because your lungs are trying to produce oxygen. But instead, they're producing so much mucus that you're constantly coughing it up. And in the hospital, they measure how well you are or how secure you are by what the volume of a cup of sputum you cough up each day. So on a good day for me, it was about this much when I was healthy. And then on a bad day, I was coughing up one to one and a half cups per day. And if you think that's just sitting in your lungs every day, you like a boat with a big hole in it. You're shoving it in the water, but you're sinking faster than you can shovel. And eventually, the ship will sink. So you've got that. Plus, then you can have diabetes on top, which I had diabetes, which was extra regime work and extra monitoring and complications with having low blood sugar to high blood sugar would increase the amount of illness and infection you would have. And then plus asthma on top of that as well. Is that common for cystic fibrosis uppers to have another problem? And also I'm probably unique because I've got one mainstream gene, which is the cystic fibrosis airways condition. But I also have one unique gene, and the unique gene hasn't been diagnosed and they've done a secondary test to try and work out what exactly is this unique gene and how can we track it so we can also help other sufferers with mapping and therefore research and going at that particular gene and trying to expose it and see if we can fix it. But my unique condition is one of... from what I understand, I haven't seen any other people like me, but I don't have a digestive problem where I have to take enzymes. So prior to the transplant, you try and put cystic fibrosis to the back of my mind and work on a daily basis so that the things that I was doing was my work and my family and a bit of my health and stuff. But I wasn't able to do what most people do, go to the gym and have a bit of a workout and come home feeling refreshed. Over the last 10 to 20 years, my health has deteriorated slowly. But then on a bell curve, within the last two years, my health took a severe turn with influenza two years ago and the following winter, which was last year, I got influenza. No, I got pneumonia. Then I went into the Alfred Hospital and was just at the point of recovery. I was down in the cafeteria and just talking away. I'd been in there for three weeks already and then I'd went back to the ward and then a couple of hours later started feeling like I'd got a bit of a temperature and felt good that I'd just left pneumonia. And then within another two hours, sitting on my bed, almost convulsing with a feverish fit, buckets of sweat pouring off me and I was almost in a coma-ish state where I wasn't 100% aware of what was going on around me because my temperature was about 40. And that's pretty unable for someone who already is at a low point anyway, at 25% to then chuck influenza A on top of them, which in the suburban hospitals, they were recording how many people had died from influenza at the same time as I'd got it here. So my doctor put the call through. It was a Saturday night. He was at home. He picked up the phone, Dr. John Wilson, who's been my doctor for the last 20 years at the Alfred Hospital and spoke to the physio, Brenda Barton, who was actually been my head physio for probably 30 years, I'd say. Followed me over from the kids' hospital and I think it was due to them that I didn't end up in ICU in a coma-ish state and basically knocked out because I was unable to hold myself together and they nurtured me through with the nurses who brought all the emergency equipment to my bed and with the heart bumpers and the special emergency team where all the nurses get their met call and they have to come from other wards to come down and help someone who's in an emergency state. That was me. I just remember a lot of nurses around my bed all talking to me at once and it was like watching everything out of focus and that sort of what knocked me to the point of getting back up onto the fifth floor where the respiratory ward is and the first time I'd really seen the transplant doctors and the team came around. So you needed to go to that sort of level to be able to go to a transplant level but almost on the verge of dying? Yeah, so there's like too early and too late and then there's a window and my transplant doctor Glenn said just before that the weekend doctors came around and they were nice and relaxed and very happy and they obviously loved what they do and said, Tall, if you don't get better tomorrow we'll look at putting you on ECMO and I didn't know what ECMO was it just sounded like a cool word I don't know what that is something really cool just have a party ECMO sounds good but when I started to find out about it I thought I think I'd rather stay in fight than go on ECMO because what ECMO means is we'll take you down to intensive care and when you're in intensive care you don't go there for happy reasons or it's not a social visit this is the ward you go to before you die or before you live so there's only two choices and two ways you come out we're either going to come out on top of the world or you're going to come out in a black box and I saw both while I was down there so ECMO is where they take the blood from the left side of the leg and pump it around a dialysis or oxygen machine oxygenate your blood and stick it back in the other side of your leg and then circulate through your body at the same time you're 100% knocked out so you're just sitting there sleeping and whilst you're sleeping you're waiting for someone to come up as a donor with a set of lungs and it's one of those times in life where your brain is just going into a state of like euphoria and you're not too sure what you're supposed to think or what you're supposed to feel because there's no guidebook for how you're supposed to react or think when someone's about to tell you that you've only got two choices left in life and they're going to happen so quickly that you're not able to make any plans or decisions it's more like when you say goodbye to your wife and go to work you've got that short amount of time to say goodbye to your daughter, your wife your best mate your pet if you've got one and that's the amount of time I've sort of had left in life to be able to wind up and package my whole 40 years on the planet to that little section to say this is all I have left and you know even if I do regret anything it's still too late so I was really in the stressful anxious, scared part of my life the doctors were very very confident that I was going to come out and not only come out, I was going to come out like a bull just fighting and full of energy and they said you know, tour the biggest the biggest risk for you is you know, falling off the bed before you get there but in terms of us doing a successful transplant with you we have no hesitation this is going to be one of our most successful transplants and they look at all these different numbers it's amazing what they actually go through and it's hard to explain to anyone that hasn't done it if I had have recorded it would have been pages the whole but the numbers that they saw your window starts here and if you'd like to go on the list now this is the optimal time for you but we need you to make the decision because you can still maintain yourself and live a normal life the life that you're currently leading and get better but there's a risk that if you get an infection it may throw you back even further than you are now or you can have your operation now and we will see you healthy and fit quite quickly and the risk is that you may not come out with the operation or you may come out with more complications than you went in with or the organs just don't talk to each other or maybe it's a year later that the organs decide that the body is winning the fight against the new set of lungs that I got so I actually got two sets of lungs and then you're back on the table looking for another set of lungs as well so I'll just show you but this is this is the set of lungs that I got so a scar from all the way around there two drainage holes for the lungs to drain the fluid from and then on this side again under there so they open your rib cage like that to about there and I'm bent backwards over a table with my arms over my head for about nine hours and then so in that position then recovering and coming back you're quite sore and your body's muscular is sore as well and having your rib cage split open like that and then squash it back together still and I think probably for most of my life I'll be on nerve pain medication what happened with the false starts was the doctors put you on the transplant waiting list and then they have to wait for someone to be ready to donate their organs which is a precision match for me and they'd been on the transplant waiting list for about three weeks and then the call came through to say we've got some lungs for tour and that happened early in the morning and my wife and I went ballistic and we started calling people and telling them it's on it's on it's on you know he's going to get new lungs he's going to have his operation and we turned up to the hospital and we sat on the bed and they said we'll just do some blood tests to get started and one of the nurses from the transplant unit came back and forth every half an hour and in the first instant she said look we're not too sure if it's going to go ahead and then we thought you know it's only a bit of a hit she said but it still could be on and next she came back about 40-45 minutes later and what they have to do is wait for the person they give them like an hour's grace and within that hour if you get too close to the hour she said that the lungs are perished too much to be able to be put into my body and health healthily connect to my heart so they said look we're really sorry but it's not going to go ahead today so left like we'd gone to Luna Park and we were that deflated that it was closed on the day we turned up I went in the second time and I was there for six hours this time got the build up really thought it was going ahead they made me shave I thought right if they shave my chest it's got to be on for sure you know he don't ask a man to shave if you're not going to do the operation so I'd done the work up spend six hours my best mate was there and my wife and daughter and my parents were there for a bit and it didn't go ahead and left left a bit more you know I'm used to this now I had my first knockback this is my second knockback so I'm pretty confident I can handle a third knockback and there was a phone call 11 o'clock at night and said it's alright I'll get the phone who would call this hour after a beautiful day I hope this is not your parents or my parents wanting to you know they'd forgotten something they wanted a cup of sugar and the hospital had called and spoke to them and said a set of lungs had come in and we're fairly certain that this is definitely going to go ahead we'd like to order come in at one o'clock and I said put the phone down I'm going back to bed, wake me up at quarter to one so she started packing my bag and got excited and called a few people and organised for my daughter to be put somewhere and said okay we're going in and I thought oh god here we go again you know they've woken me from a beautiful sleep and I said I'm going to put an invoice in for my sleep so we went into hospital and the only two people standing in the room that night with me was my wife and my best friend who'd had a transplant 10 years before me and it was a calmest feeling thinking this could potentially kill me well this could potentially send me back to my family and quality time with them and ride bikes and ride awesome bikes not only a bike but that best bike the Ferrari of bikes and I'd I just kind of recalled it things that I've done and bucket listed very quickly just recent experiences like on my 40th birthday I went to Aurora and for me was one of the last things that I wanted to do before having a transplant and going to the point where I was unable to travel overseas and also at a bucket list because at the age of 40 was considered the life expectancy with someone with 60 fibrosis so I thought what can I do that would be a long lasting memory for myself and for my wife and daughter and thought about having a big party in Melbourne inviting all my friends and just crashing it and laying 10 grand on the table but I thought what's that going to give me I'm going to get drunk I'm going to pass out I won't remember a thing so I thought maybe I'll do something that I might remember better and going to watch the sunrise over the beautiful ocean in the Pacific Islands was something that I valued more and then that was my experience so you took those memories as you were going into the Operating Theatre for the 3rd and final 3rd and final call, no more bids wow that's awesome the only other person was the nurse sort of off in the background very quiet and silently waiting who came over and said would you like to see a priest or is there any kind of religion that you would like to attend prior to going in and I said no she said that's okay so we got a photo of myself and my wife and my friend Glenn together and we said goodbye and I said I'll see you in a couple of hours and as I was going being wheeled into the theatre there was a dark room going into a light room which I thought this could be going to heaven I went into that waiting room on the bed and just raised my fist in the air and just thought I don't care what happens I'm going as strong as I can into this fight for the next nine hours and my body's going to be fighting for me and I had the operation and I'd come up to the intensive care unit and I think my wife and mother were quite happy that I was back on the ward and the nurse said that I was losing a lot of blood and they will have to take me back down to theatre and I thought he's just come up what does he need to go back down this is not right so I went back down to theatre and it turns out that as they were operating on me they'd accidentally sliced my diaphragm which was leaking blood so they had to go back in open me up again and then find where they sliced me cut the stitch it back up then stitch up the big part and then get back out and put me back up on the ward just carry on top of the whole experience it's like forgetting to put the muffler back on and you go back in the garage attaching a bit so I remember waking up and the day doctor started at seven o'clock in the morning and takes over so the day doctor had the full responsibility and the night doctor was really there just to carry through until the day and if anything happens and say that there's an issue what should we do but prior to the seven o'clock they said I was talking or trying to communicate and trying to communicate with this stuck down my throat a bit hard so they couldn't hear exactly what I was saying so they gave me a little board and a whiteboard marker and I was like we know you're trying to say something but we can't so write it down and show us and I wrote down very clearly take this out and the doctor was on night who wasn't really supposed to be able to do that because it's not his responsibility he said Tor I was so confident in you because you wrote so clearly that I thought if I take it out you will be able to breathe by yourself and he did take it out half an hour before the other shift started and I took a deep breath which was the first deep breath taken which was not a small breath I could breathe in and hold and I'm still holding and I'm still holding and then I could let it out and it was the most freakiest moment to feel that you're breathing through someone else's body parts and knowing that someone else had passed away and as someone else was being mourned and put in the box or cremated etc I was embracing life and getting excited about living and walking and bike riding and jet skiing and mountain climbing and sky diving and snowboarding I was looking forward to all these things but the other person was not who the other person is under the privacy act you're not allowed to know who the other person is unless I write a letter to the hospital or the organisation to deal with transplants they vet the letter, send it on and if the other party would like to communicate back then they can vet and sort of make sure I think what I would like to do is spend a bit more time with my new lungs and just do a little more experiences and just feel that I've got something to write back to them about why I'm so humbly thankful for these gifts that you've given me so I'm still maintaining myself now on two fronts the transplant front plus the cystic fibrosis and the diabetes front with a little bit of asthma thrown in sprinkling on top it's pretty exciting right coming back from the games and the euphoric state of finishing a five kilometre bike race in the morning in a hot sun in Queensland in Narang which was a circuit course up and down a major hill and then following that within 40 minutes I had to run off to specialised in Narang to get the bike fixed to then come back and compete in the 30K bike race straight afterwards was just absolutely tearing my body apart but I felt so good afterwards what that confidence has given me to think of the future and what I could possibly do has really confirmed that after doing the Australian transplant games and subsequently fighting out at the gala that I'd won a gold medal in the five kilometre time trial has solidified me to go to the world games the world transplant games and compete for Australia in those games beyond proud I'd be something that I'd seen on TV and think I am really standing in the world games competing for Australia and just the buzz and the excitement of having myself there and my daughter and my wife and all the other competitors around me that we're all on an equal playing field that we've all suffered a severe illness paining ourselves daily on a daily basis with multiple drugs and we're all going through pain, we're all going through could be dialysis with kidney transplants but you just don't know what people are suffering and the people I was there with all of them who had had a transplant no one had ever stopped to complain during the games about the suffering and the pain or problems that they've been going through was just happy to be out there to be around people that would just go I do dialysis every night for the last 10 years and you think okay if you come home from work and you've had a bad day spare a thought for someone else who had just been doing the hard yards and then during the day that they then go to work I had a moment inside me that just snapped after I had my transplant and I'd never felt like I was really in a moment or really able to give back in life to the people that had helped me through life and supported me but after having a transplant it was like something had snapped inside me and all I'd wanted to do was to be vocal about my illness and to be able to tell anyone before so it's like I couldn't stop talking to strangers about having a transplant I just can't help myself and I wanted to help other people because it had such a good experience with the staff at the Alfred Hospital I really felt like what they'd given me and what they actually were able to give me with the equipment and the staff was so grateful that I thought they need more staff they need better equipment and they need to be able to cater for the hundreds of transplant recipients that they're creating because they're having so much success with transplants that I just wanted to help in some way thanks for sharing your story it's a ripper, unbelievable you got your bike here, you got your lycra what's going on, where are you going now to the World Games, Ken where else World Transplant Games that is should we go for another ride I think we should go for another ride together such a cracking day you're halfway there I'll catch you in the next video