Last year I caught the flu, it progressed horribly. I then later got pneumonia, bronchiectasis, bronchiolitis obliterans. I was then put onto the transplant list after 9 months of attempting other solutions. Don't know how much proof I can provide other then my first X-Ray post operation - Link: http://imgur.com/Zyu963d

Comments: 168 • Responses: 31  • Date: 

seamstress8051 karma

What is that heart-shaped line in your XRay?

afklegion64 karma

The heart shaped line were the two drains that they put in to get any excess liquid out of my chest cavity :)

AuntyVillain32 karma

Does breathing feel any different with the new lungs? Or is it too had to tell because the old ones had been bad for an extended period of time?

So scary this resulted from something that is generally harmless. I've had a cold become bronchitis and pneumonia, but thankfully it stopped there.

afklegion69 karma

Breathing feels a lot different to what I had gotten used to over the 12 months I was sick, but its hard to tell from before I was ill. And yeah the fact that a lot of people when they get a cold just say stuff like "Oh its just a flu" is very scary and I'm trying to get the word out that the flu is a lot more dangerous then people think

borkborkborko17 karma

What's your prognosis/life expectancy with your new lung?

I recently learned that getting a heart transplant, for example, only gets you a few more years.

afklegion49 karma

At first I had heard that the life expectancy post lung transplant was only three to five years, but the doctors who are looking after me have patients in their 60s who are over 20 years post transplant. As I'm only 17 this year, they believe I could get more then that from these new lungs.

There is also the chance that medical science progresses a little bit further and they can make a new set of lungs out of my own tissue

ClaytonBigsbe16 karma

Jesus, reading things like this really puts things into perspective. Only 17? I hope that new set of lungs serves you well, and you get to live a full, happy and healthy life.

afklegion3 karma

Yeah, my whole perspective on life changed after the experience. And thankyou :)

boganknowsbest15 karma

Whos lungs did you get?

afklegion35 karma

In Australia we don't get told anything about the donor, all we get told is whether the lungs came from your state, or out of state.

Ihateyouall8638 karma

As someone who just lost a friend who donated his. lungs all I can say is live the best you can and appreciate life all you can and the gift that was given to you.

Serious side question, what does it feel like to know you have someone else's lungs? Does it feel like someone else's lungs? It's weird I know lol

afklegion3 karma

The first couple of days post transplant I felt as if I didn't deserve to live. I felt as though my body couldn't keep me alive, so let natural selection take its course. I still have these thoughts pop into my head. It sucks but in a good way.

Ihateyouall861 karma

Thanks for the reply! Try not to let the negative stuff get to ya, life is too short man enjoy the time we got here no matter how we got it :)

afklegion2 karma

Yeah, thanks for the positivity :D my parents got me some puppies when I got home to try and help motivate me to progress with my physio, and to help cheer me up. Also because I was in a children's hospital while part of what I believe was Thor Ragnarok was being filmed in Brisbane, I got too meet Chris Hemsworth and Tom Hiddleston. So I definitely have been cheered up ahaha

agirlontheinternets3 karma

If you had the option to learn about your donor and meet their family, would you do it?

(I don't think I would, but I've never had a transplant so who knows)

afklegion4 karma

I don't know if I would, I'd love to know how they're doing and let them know I'm doing good though. I don't know how I'd react seeing them in person

LovelyStrife11 karma

Looking back, do you feel like things progressed this far because you didn't seek medical help soon enough or because the medical treatment wasn't aggressive enough?

afklegion3 karma

We went to our GP as soon as we knew something was wrong, he said it was a cold or flu. We went back two days later and I wouldn't have lived another day outside of hospital. The medical treatment I was receiving was the most they could do other then put me on the transplant list, which they wanted to avoid, but it got to the point where one of my lungs was constantly collapsing and the other had just trapped air inside

HeraldOf10 karma

Did you have any history of lung disease or immune system issues before this happened, or was it just a really powerful strain of flu?

afklegion13 karma

No history of any illness in my family, was just a powerful strain of flu :/

InTupacWeTrust8 karma

What's it like having a new lung? Is breathing much better with the new one in place?

afklegion25 karma

For the first few days after receiving the lungs, i was still scared to do anything without having an oxygen mask as I'd grown used to it, and it was neurologically embedded that I needed it to walk, talk etc. after a couple of days though, breathing became MUCH easier then it had been in over 12 months, which was very satisfying

BabyBabaBofski4 karma

What part of your life has been impacted the most?

afklegion2 karma

My social life :( I have barely seen my friends in the last 12 months, and when I do they can't stay long :( it's sad

KoogLarousse3 karma

So if I understand correctly, you got 2 new lungs right?
My question is, how do you feel (psychologicaly/emotionally) knowing that you have part of someone else's body inside of you?

afklegion1 karma

Yep you understood correctly, and I feel a sense of regret to be honest. As if my life wasn't worth living if someone else had to die for mine to continue. I know that they wouldn't have lived anyway, but it still hurts.

KoogLarousse1 karma

In my way of seeing it, considering the person was an organ donor, you would make them really happy by not letting their body go to waste. I mean, in a way, one of your life's purpose/worth is allowing part of that person to still be alive

afklegion1 karma

I 100% agree, the media in Australia want to do a report on my experience, and how serious what people label as just a "cold or flu" can really be. So in a way I feel as though just through that, I'm making a difference for the better

westrox113 karma

While the surgeons are actually performing the surgery, how are they oxygenating your blood at the point where the transplant is taking place and you don't have functional lungs yet? Do the new lungs start working right away? I'm glad you're doing well and good luck to you. Thanks for sharing.

afklegion3 karma

As the other two have said, they put me into bypas. As for your other question, my memory of that point is HORRIBLE because of all the anaesthetics, but I'm fairly sure by the time I woke up after the surgery I had no pipes going into my lungs, no EKMO (oxygenising my blood through my groin) and I was breathing on my own

Sotty633 karma

Was it weird hocking up that first loogey knowing it wasn't yours?

afklegion4 karma

VERY

SpideyTheOneAndOnly3 karma

After having this happening to you, are there any changes you did to your activities or lifestyle? If so, what?

Also, wow, didn't know pneumonia was that dangerous, got pneumonia during first grade.

afklegion2 karma

As im only two and a half months post, I haven't really had the energy to do much yet. I've mainly been doing things that I enjoy around the house (playing wow, and league with friends) but I definitely have a much different perspective on life now. And when I recover my energy, I'm thinking of picking up either baseball or basketball

TurtlesWillFly2 karma

How much does the transplant cost?Can insurance hopefully cover it?

afklegion20 karma

I'm honestly not sure how much it cost, as I am very lucky to live in Australia with the healthcare system we have here, otherwise me and my family wouldn't have a roof over our heads currently. And yeah insurance covered the whole cost of my transplant :)

TurtlesWillFly5 karma

America is known for its "lovely" health care and it's not helping that I am short on solutions.In my situation my best friend has a bad lung and is worried about her health occasionally and generally it's scared me to the point of trying to find a way to pay because I'm determined to help her whether I pay with help or not

afklegion2 karma

Yeah I'm sorry to hear that, the best way I can think of going around that is starting a gofundme if worst comes to worst. It's honestly surprising how many people you've never met, would be willing to donate to a cause such as that one. In saying that, I hope that your friend doesn't need to have any operations.

brees-no-football7 karma

I have no idea about Australia, but I can tell you that a double lung transplant and month-long hospital stay will run you about 970k in the good old USA. I'm post transplant almost 9 yrs.

afklegion1 karma

congratulations on 9 years! (almost) but yeah ive heard the prices aren't pretty.

QuizMizz2 karma

Throughout your illness and transplant procedure, what was your most terrifying moment?

afklegion3 karma

The doctors telling me multiple times that I wasn't going to make it, seeing my friends and family like that was horrible

ThePhantomPoster2 karma

This is quite a lot to handle for a 17 year old. How did you take the news as the illness/treatment was progressing?

afklegion3 karma

Honestly, I was scared. But the nurses and doctors who I had made me know I was going to be okay. The nurse in ICU before transplant when I was starting to go backwards again, made a promise to me. He promise me, no matter what he has to do, he will make sure I make it to get the transplant

gkiltz2 karma

Did you already have Cystic Fibrosis??

afklegion2 karma

No, prior to getting sick I was perfectly healthy. Although the doctors were treating me as they would a CF patient because it was so similar

Mutantdylan2 karma

Do you have any special instructions or any restrictions for your life now that you have had a lung transplant? Do you have to take any medication to keep your body from rejecting the lungs?

afklegion3 karma

Currently my medication list contains more then 20 different medications, but it will start to go down. Instruction wise, I'm basically on a permanent pregnancy diet to avoid getting food poisoning and throwing up the medication

semma_bemma1 karma

How long before you realized something was off or wrong with your lungs? My cousin caught the flu and it attacked his heart. He ended up with a fake heart with external battery packs and then had a heart transplant a few years ago.

afklegion3 karma

Well I had come home from school extremely tired on the Friday - end of term so was into holidays, felt pretty tired went straight to bed. Pretty much slept all weekend so parents took me to our GP on Monday, he said "oh it's just a cold or flu". By Tuesday night you could hear a rattle when I breathed in so we went back to the GP and he sent us straight to get an X-ray, then from there I went to the hospital

CPT_Clarnence0 karma

[deleted]

afklegion1 karma

Can't say I have, why do you ask?

klousGT0 karma

Title says cold, post says Flu. Which was it?

afklegion2 karma

Honestly I'm not sure, all the doctors we saw before they realised it was serious we're just saying "cold or flu" and then I was in an induced coma for a lot of it, sorry I couldn't be much help there

AddictedReddit-5 karma

Title: I caught a cold!

Reality: I caught flu then pneumonia, bronchiectasis, and bronchiolitis obliterans.

Misleading much?

afklegion2 karma

Please, please know what youre talking about before accusing someone of being misleading.

I was told on the Monday that I had just had a cold. 5 days later I was put into an induced coma, while being intubated, due to my lungs not working how they should. When I woke up 6 days later, I was told that I had influenza A.

Moral of the story, don't abuse someone before knowing the full story.

AddictedReddit0 karma

You still didn't catch a cold. You're still wrong.

afklegion2 karma

Again my friend, I had a cold on the Monday, it progressed to be worse later on. I'm sorry that your education system doesn't allow you to process these things. :/

AddictedReddit-1 karma

A cold is a virus. Pneumonia is bacterial. A cold did not cause you to need a lung transplant, fucking retard.

afklegion2 karma

"Bacterial pneumonia can sometimes develop after a cold or flu and often is caused by exposure to the streptococcus pneumonia germ." Link - https://health.clevelandclinic.org/2014/01/how-to-tell-if-its-pneumonia/

AddictedReddit-1 karma

You had the flu, not a cold. Stay in school kiddo, you'll need it for your burger flipping career.

pickleyadickle2 karma

Lmao I think the OP knows a little bit more about his conditions than you do, bud. Find a better hobby than picking fights with 17 year olds on reddit :/

AddictedReddit0 karma

You must be incapable of reading. Read the title, then the text. Let me know if you need help reading, I know the No Child Left Behind Act makes it difficult for your generation.

afklegion2 karma

Okay my friend, let me help you understand this. I had a cold, which lowered my immune system. Due to my lowered immune system, influenza A was able to make me more sick then I was. I understand where you're coming from but I have had to live with this for the last year, so please don't abuse me when I know what I'm talking about. I've had, you guessed it, MEDICAL PROFFESIONALS with me throughout the last year at least once a week - and that's only been since I came home from my transplant.