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.
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