I Have 700 Cysts On My Lungs | BORN DIFFERENT
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HAYLEY, 30 was born with a rare condition called Lymphangioleiomyomatosis (LAM) that causes cysts to grow on her lungs and kidneys. Most people with LAM have two or three cysts growing, but Hayley has around 700 cysts growing on her lungs alone and it is estimated that only two in a million people have this condition. Hayley told truly: “It’s like you’re breathing but heaviness in your chest and you just can’t get that breath. I’m hooked up to oxygen day and night and without it, I struggle to breathe”. Hayley is going through the motions of getting onto the transplant list and with the help of her fiancé Michael and her family, she wants to raise awareness of LAM and does this through her social media. She says: “my condition is so rare that there is not much medical research done but I’m hoping to change that”.
Follow Hayley:
YouTube- https://www.youtube.com/@Plainlyhayley
TikTok- https://www.tiktok.com/@plainly.hayley?lang=en
For more information on LAM please visit: https://lamaction.org/
HAYLEY, 30 was born with a rare condition called Lymphangioleiomyomatosis (LAM) that causes cysts to grow on her lungs and kidneys. Most people with LAM have two or three cysts growing, but Hayley has around 700 cysts growing on her lungs alone and it is estimated that only two in a million people have this condition. Hayley told truly: “It’s like you’re breathing but heaviness in your chest and you just can’t get that breath. I’m hooked up to oxygen day and night and without it, I struggle to breathe”. Hayley is going through the motions of getting onto the transplant list and with the help of her fiancé Michael and her family, she wants to raise awareness of LAM and does this through her social media. She says: “my condition is so rare that there is not much medical research done but I’m hoping to change that”.
Follow Hayley:
YouTube- https://www.youtube.com/@Plainlyhayley
TikTok- https://www.tiktok.com/@plainly.hayley?lang=en
For more information on LAM please visit: https://lamaction.org/
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FunTranscript
00:00I was born with a rare condition that causes cysts to grow on my lungs and my kidneys.
00:05There's about 700 cysts on my lungs.
00:08My lungs are at 17%.
00:12It's like you're breathing but heaviness in your chest and you just can't get that breath.
00:17I'm hooked up to oxygen day and night and without it I struggle to breathe.
00:21I'm hoping to get on the lung transplantation list
00:25but I don't know if I will ever get new lungs.
00:28Today I'd like to raise some awareness about organ donation.
00:31We don't get enough attention brought to our disease.
00:35I'm hoping to change that.
00:41This is a steroid inhaler that I have to take every day
00:45and this just relaxes your airways and clears them and makes breathing a bit easier.
00:50I have hundreds of cysts growing on my lungs and my kidneys.
00:54Due to my condition, my lungs have collapsed three times.
00:59I have a condition called Lymphangiolial Myelomatosis, LAM for short.
01:04I take my Ibizoprolol for my heart an hour before I wake up.
01:10Then after breakfast I take Gabapentin, which is a nerve block.
01:18I also take an antibiotic to help with my recurrent chest infections.
01:24I have I think a total of seven cysts on my kidneys.
01:29There's about 700 cysts on my lungs.
01:33It stops my lungs from working properly and my airways are obstructed by the cysts.
01:40So this just takes my oxygen levels and my heart rate.
01:47And how rare is the condition?
01:49It's about two in a million and it's super rare.
01:54In the north of Scotland there's only two of us.
01:58So this is my big oxygen concentrator and it takes in air from around the house
02:06and it cleans it using big filters on the side.
02:11I turn this up and down and that gives me how many litres of oxygen I need.
02:16So I'm on six litres of oxygen.
02:19So I'd get the bulb to six.
02:22And for bedtimes I would turn it all the way to two.
02:28And that's what I sleep with.
02:31It took a long time to get used to being stuck in oxygen.
02:35It's a nuisance. You never fully get used to it.
02:39It does make a noise.
02:41So you do get looks and it's uncomfortable and it's heavy.
02:46There's been times in the house where I wasn't getting enough oxygen
02:51and I have passed out.
02:54I was in my wardrobe one day having a clear out
02:58and Michael found me fainted.
03:00I'd fainted in the wardrobe.
03:02I have gone into shops without my oxygen in the wheelchair thinking I'm fine
03:08and my oxygen will drop and Michael has to run out to the car and get the oxygen.
03:15I can't breathe.
03:16It's like you're breathing, but heaviness in your chest
03:19and you just can't get that breath.
03:23So Michael is my fiancé and we have been together for nearly 13 years.
03:30Get a cup of tea, huh?
03:32Yeah.
03:33Are you getting a cup of tea?
03:35Yeah.
03:37Oh, yeah.
03:41Michael has been the most supportive person in my life when it's come to my health.
03:47Day to day, the tasks I find difficult or anything too strenuous,
03:52if I bend down, I can get really quite dizzy.
03:55So putting on socks, for example, is a mission for me.
04:00So a lot of the time, Michael will help me with that.
04:05So every day, I kind of fill up Ceeley's pill container with all the pills she needs for the day.
04:11Just so that if we go out or do anything that day, we have them with us.
04:16He makes sure that I eat plenty and if I need extra help getting dressed or,
04:25you know, he's even had to help me wash my hair.
04:30I love the face, though.
04:33That was Michael asleep in the room.
04:37Quite comfy, I like this.
04:38It's just, you're born with the fault in the gene.
04:43So I was born with LAN.
04:45I didn't first notice any symptoms until my teens, 16, 17,
04:51when I found exercising to be a little bit more difficult.
04:55I was brought in for a CT scan and that's when I was told that I had LAN.
05:01I'd never heard of it.
05:02CT scan, all done, went really well.
05:07My lungs are at 17% and normal is in the range of 70 to 100%.
05:16When the topic of, I would need a transplant was brought up,
05:21that was like, well, that's major.
05:27LAN is a progressive disease, nothing can stop it.
05:31The surgical options are talc pleurotesis.
05:35So, you know, talc powder?
05:37This is basically a medical form of that.
05:40They scrub it onto your lungs and basically causing immense scar tissue
05:47so that when you breathe, it sticks your lung to your chest wall.
05:52I had my lungs talc'd three times, twice under anaesthetic and once while awake,
06:00which was the most painful experience I've had in my entire life.
06:05Ellie's been in surgery now for two and a half hours-ish, and I'm a surgeon.
06:13My condition is so rare that there's not much medical research done.
06:17I'm hoping to change that.
06:20So I started posting after my second surgery, which was April 2022.
06:26In the beginning, it was just family that watched
06:29and it was sort of like a diary.
06:31And it wasn't until I posted my diagnosis video that it got a lot of views.
06:38And then the scariest part, she said, was,
06:42we're going to have to get you on the transplant list.
06:50I've had some women with LAN message and reach out how it's helped them.
06:56So that's kind of what keeps me making the videos.
06:59Today, I'd like to raise some awareness about organ donation.
07:02Registering to be a donor takes two minutes and your body can save many lives.
07:07For anyone watching, if you could consider looking into organ donation,
07:13just go have a look at the NHS organ donation page and consider it
07:18because you never know what's around the corner.
07:22This is basically like my big machine, but compressed.
07:28We're going today to Lochendorb, which is one of our favourite spots to take Toby.
07:34We're going to meet my mum and my sister there,
07:36go for a nice walk and enjoy some Scottish web.
07:40What are your hopes for the future?
07:43One thing that's important for me is raising awareness to the fact
07:49that if you know your body is going and no one's listening to you,
07:54find a way to make them listen.
07:56Hi!
07:58Because of the rarity of LAN, there isn't enough funding.
08:03There's not enough known about it.
08:06We don't get enough attention brought to our disease.
08:13I just hope that by sharing my story, other people learn to trust themselves
08:20and I'd like them to know that nobody knows how strong they are
08:24until they're faced with challenges and yeah, I hope I can give a little back.
08:31I hope I can just carry on enjoying my life and spending days out with my colleagues,
08:37my family and having little adventures and yeah,
08:42I just want to enjoy whatever time I might have.