6 days ago i was that 26 years old who was about to receive a double lung transplant. Now i'm a whole new person, i got tubes up my chest, my skin feels like rice krispies but at least i can finally breathe, and live. AMA!

My wife will be getting a double lung transplant within 6 months, any advice or words of encouragement for her? She is pretty scared of it all (as are we all).

Once she gets the phone call, she needs to let herself go with the flow. put trust in her loved ones, take all the love you can from them before you go in, and then let herself go in the hands of destiny. She will wake up a whole new person, it did not just change me on a physical level, i feel richer as a person on every single level now. I kept joking and feeling positive, had a "here goes nothing!" attitude going into the operating room, and i think it's what helped me the most to get through this. "Positive attitude, bro!" is cliche as hell, but it helps.

also, best of luck to your wife. i know she will get through it and it's going to be the best surprise phone call in her entire life.

Can you please post a video of them pulling out the chest tubes?
That shit is gnarly and probably one of the most unexplainable sensations I have ever experienced.

Congratulations! Breathing is pretty awesome!

On a side note, whenever I see stuff like this I feel the obligation to say something: make sure you educate yourself as much as possible on the risks of immunosuppression. My wife did not pass away because of rejection, she eventually lost her battle with a rare fungal infection called mucormycosis.

My wife showed ALL of the early symptoms, but because we were never informed or educated that "mucormycosis is most likely to occur among immunosuppressed people" we weren't looking for it. We thought it was just another migraine... and then it was too late.

I am going to start having educational session with different transplant team members starting tomorrow actually. I'm meeting with a pharmacist, bone specialist, nutritionist, microbiologist, physiotherapist, endocrinologist (as with the transplant now comes full blown diabetes), and maybe one or two more expert i can't think of right now. There is a lot of information to be learned, the next two weeks are going to be a crash course into knowing how to live as long as possible with those new lungs.

I'm ready for it. i've already become quite anal about germ prevention, nutrition and disinfection, i've never fond of germophobes but i know my survival depends on it now.

i also want to add two things: first off, i'm someone who has always needed to understand how things work. i can't just be told "dont do that", i need to know what happens if i don't do it. I love to be informed in general and i think it's really gonna be an asset for me in this adventure.

Second thing, and most important: My condolence for your wife. i heard about a friend of a transplanted friend who almost died from it as well, luckily they were able to detect it on x rays early enough.

Thanks for the update. I had been thinking about you. Glad everything went well! Now go forth and write a great chapter of your life! You deserve it!

Here is a complimentary question mark for you to look at. They're neat.

"?"

you're taking me by the feels. i love question marks.

Why does your skin feel like rice krispies?

Haha! well the technical term is Subcutaneous Emphysema, which is a normal condition after serious surgeries like that. when they cut open my chest and pried open my thorax, air bubbles formed under the layer of skin they closed back up, and it will take a little while before that tissue regenerates. in the meantime, it literally feels and sounds like i have a crust of milky rice krispies cereals when you touch my skin, crackling under. it's a fuzzy but weird feeling, personally i think its just awesome!

Do you touch it on purpose, like popping Bubble packaging? That feel.

oh gosh yes. i try not to go too close to the scar but its the crispiest part hahaha

That is kinda awesome. how many hours were you on the operating table?

about 5 hours and a half, it went "picture perfect" apparently!

When you went under, did you feel as if you woke up only a few moments after?

that's exactly the mindset i tried to have going under. "if it goes well, i'll just wake up like it never even happened". and it felt like that!

How does it feel to be the hottest post-op guy in all of quebec?

Self-explanatory

Congrats! Good to hear your well and looking surprisingly chipper.

My nephew is going to need a new heart fairly soon but is getting pretty fed up of everything already. Not really suprising for an 11 year old in that position. Any tips/advice?

get him to meet with someone a little older who went through it at about his age. someone he can look up to and feel like "i want to live like him,i want to do this".

Glad your surgery went smoothly. Were you able to breathe normally right after waking up or are you still limited until you recover more and the tubes come out and such?

i was intubated (breathing tube down my trachea) after surgery. The surgery went from about 12:00 pm eastern time to between 5:30 and 6:00 am eastern time. The doctors went through no troubles with the transfer to artificial breathing or vascular reconnections, which is usually the trickiest part. i was transferred to the intensive care unit straight after, and woke up, all drugged up and not 100% conscious around 7:30 am (apparently, cause i don't remember most of it.) First thing i remember was just the thirst. my mouth felt like the desert and i just wanted water. i can remember trying to speak and realising i was tubed up, then trying to signal for an "O" (Eau, "water" in french) with my fingers but had no idea they were paralyzed at the moment. they had to tie me down because i apparently tried to remove my tube, but finally i was able to calm down and regain full consciousness around 12:45 pm (friday morning). They removed the tube then, and i started coing to my senses slowly. Quite a weird experience, but it's awesome that they were able to remove the tube only 6 hours after surgery, it usually takes up to two days, even longer in some cases.

My GF with CF got her lungs on Dec 22 and she hasn't been extubated yet :(

Ouch, this makes me value my situation so much. I really hope things get better for her and she gets out of those tubes and that hospital ASAP! i'll be thinking about her.

Late question here, but what does it feel like to breathe while intubated? I've never had anyone close to me with that experience so I haven't had a chance to ask anyone.

not fun. The thirst. THE THIRST. it feels like you have a fan blowing dry air down your throat yet you cant salivate or drink water to quench that thirst. Also weird to not have to force to breathe.

A friend of mine had cystic fibrosis, but lost the fight back in october and is now breathing easy. She'd had a double lung transplant in her early 20s, and had rejection under control for years, until late last year when it reared it's ugly head. She was one of the girls from the documentary 65_redroses.

I'm not too familiar with the medications, I only know she was on pred and something else. What meds will you be on/are on for rejection?

right now they started me on Pro-graf, Cellcept and one more i can't remember the name. i'm going to have "lessons" with a pharmacist, nutritionist, transplant specialist nurse and physiotherapist in the next few weeks. i should know more about the details of this tomorrow the team is taking it one day at a time so far with me.

I hope your friend is resting easy. its never a fight won, even after surgery, but every breath i take is worth a lifetime with my old lungs at this point.

Yeah the training will be worth it's weight in gold (especially in the diabetes department (if you don't already have it.))

Listen to what they say closely. Look up the drugs and their manufacturer's to get ALL the information on them and how they react with food and certain vitamins and minerals.

Stay away from Grapefruit. Seriously.

Lastly, good luck. Everything went smooth for me after surgery but went through rejection about 2 years ago. I have been rejection free for about a year.

Am no longer on cellcept (it drove my ANC way too low.)

Also, if you get hit with both types of rejection ask about getting blasted with chemo and then doing IV Immunoglobulin to help with passive resistance against illnesses.

If you have any questions let me know.

that's the coolest comment i've received so far. added to friends list. thanks so much!

Just out of curiosity, what were your pfts prior to surgery? (for those wondering, pft stands for pulmonary function test)

i was at about 25% FEV1, reached 15% at my lowest a couple years ago, but was able to get back to a stable 24 to 27% before surgery.

Holy cow, man. It looks like they unhinged you like a pez dispenser at the ribcage! Welcome back and thanks for sharing your life.

How badly did CF affect your activity level pre-transplant? Thought of anything you're going to do post-recovery yet, or still just enjoying life day by day?

Keep strong and keep breathing.

That's such a cool way to refer to my scar hahaha! For the Hell of it, here's another shot of that badass bitch. In all of its 55 staples of glory.

If Chicks dig it, i love it.

pre transplant wasn't fun. i couldnt take the stairs, or at least had to take pauses walking up if there was no other options. i couldnt walk for more than 100 meters without being out of breath, hacking and coughing away. Forget about running.

I have so many ideas and so many projects. The surgery actually landed at the best of times, right as i was starting this semester at university (I'm a future Journalism major and Sustainability minor at Concordia University) So i'll be skipping this semester, recover until about april, then if all goes well i'll have from may to september to travel, see the world, live life before i think about work or school. i saved up for a while so i can just leave once i had my transplant. no idea where im going yet but i finally want to make the best of that gift of a new life!

How did you end up with possible nerve damage in your right hand if they were operating on your chest? And grats on the successful surgery and good luck :D

So far, my right eye is twitching,and my right thumb, ring and pinky fingers all feel numb and have lost a lot of strenght. i can move them, but can barely bend them. its so bad i cant pick up utensils with my right hand, and i'm a righty. Doctors said it could be caused by different things: Nerves are severed when detaching the old lungs and that kind of loss in dexterity might be seen until the nerves slowly reconnect... or it could be permanent. but it's a rare thing.

it might also be caused by the Epidural Anasthesia which numbs me from the collarbones down to the belly button at the moment.

Finally, it might be that the tubes that are in my chest around my lungs draining liquids at the moment are pinching a nerve, and it will restore once the tubes are removed.

The doctors don't seem too worried about this at the moment but they're been watching it closely. as we remove the tubes tomorrow we should know more.

Update on the nerve damage: Ever since they removed the two tubes this morning i have regained Some strenght in my pinky and ring fingers, they still feel kind of numb but at least i can bend them significantly more. my eye completely stopped twitching, according to my relatives. Finally my thumb is still unable to bend, but i feel like i can applicate more pressure with it than before. doctors are confident it really was a nerve pinched by the tubes at this point. Tomorrow they will be removing the last two tubes and we'll see how it goes. (ATTN: /u/Darkchyylde and /u/fuckwpshit)

1. So does getting new lungs effectively cure all the effects of Cystic Fibrosis?

2. Were you trying to live ALL of your life in the short time that you thought you had? My friend Brian did. He died at 26 years old. He was a remarkable guy that changed my perspective on life...

ill answer the second question first: I really was. i really was trying to make the best of what i had and not limit myself, yet i was undeniably limited. i see this new opportunity as a way to push myself even further, live life a way i couldve never been able to live it before. it really changes the whole game, you could say, in a "truthiness" stephen colbertish kind of way, i went from living life to the fullest to living life to the "fullerest". :)

It does not completely cure the disease. the pancreas is still affected and i will still have to take digestive enzymes my whole life. but the new lungs can't be "infected", as it is a genetic disease. even if the dna of the surrounding tissues of the lungs still have cystic fibrosis, the lungs will never have it, therefore will be able to fully process. The one main obstacle is eventual rejection, which will happen one day or another. As someone explained in the previous AMA (cant recall his username), the lungs are the one organs that aren't completely "sealed" from the outside after transplant, they will always be taking in outside air, and therefore risk outside contamination. It is therefore considered to be the less "permanent" of organ transplants.

I took myself OFF the transplant list. After reading all your replies, I am having second thoughts.

Congrats on the new lungs and a new life!

don't. honestly. i doubted myself for a while, but what i did was asked to be put on the standby list. at one point i was feeling like i was doing good enough to be able to last on my old lungs for a little longer. i was put on standby at number 24, but then a year and a half later i caught a bad pneumonia and my FEV1 dropped down to 16%. i almost didnt make it. i was put back on the list right away and really got scared i had spoiled my life by having too much confident in my stable health.

So my suggestion to you is: talk to your doctor about going on the standby list, but make sure you are really aware of any small kind of infection you might get, and get monthly appointments with him to keep track of your health in case you need to get back on the list. they will put you back at the same spot you were before.

Also, remember that every minute with a transplant is worth a lifetime without it, literally (at least when it comes to cystic fibrosis).

Thanks for getting back to us; You've definitely been in my thoughts! How's the hospital food- Are they letting you eat solids yet?

i started eating solids the second day. Surprisingly, this is probably the best room-service hospital food i have ever had. Maybe its that new found appetite i've been having since after surgery, but i've been eating the whole plates. It just tastes a lot fresher than what i was used to at the other hospital where i was treated for cystic fibrosis. I mean, it's still hospital food, but for the first time i actually don't have to force myself to eat it.

The first meal i got on the friday night was chicken broth and a jello. and i'll be damned if i was so hungry it was the best damned chicken broth i've ever had. hahaha

They turned you into cereal?

i think they mixed me up with that guy who was scheduled for a cerealoplasty that same night...

Sick ink man, whats it like knowing that you were ripped right open and lived? Do you feel like you're basically an avenger now?

I've been feeling like Kabal the past few days, but now i'm ready to enter my mewtwo stage tomorrow once i break free of those tubes.

Congrats on the successful transplant man! It's funny how you can be so happy for someone you have never met or knew.

I expected they would cut you open vertically, I wasn't expecting the "pez dispenser" style that /u/lardlung mentioned :)

So what's the outlook on the long term recovery? Is it just a matter of healing up all the wounds and getting to grips with the medication? Or is there more to it? And besides taking meds and being careful of your surroundings are there going to be any limits on your activities?

I'm not /u/Noonealex, but as a fellow CF patient who received a double lung transplant 4 years ago, I feel qualified to comment on long-term recovery.

Is it just a matter of healing up all the wounds and getting to grips with the medication?

It is just that, in the same way as becoming President of the United States is just a matter of winning enough votes and candidating in the first place.

You've seen the scar pictures OP posted? These are but a small glimpse of what went on underneath. Lung transplantation is an incredibly invasive procedure.

Just to gain access to your lungs, surgeons have to cut through skin, nerves, blood vessels and multiple layers of chest musculature just to reach your ribs and your sternum. Next your sternum itself will be cut in half, then large retractors will be inserted both at the top and bottom of that cut. With a bit of mechanical force and at the expense of a few broken ribs usually, your chest opens like a clamshell. In fact, google for "clamshell thoracotomy" or "clamshell incision" if you need graphic examples of this, but be warned that it isn't a pretty sight.

Still, healing itself can be surprisingly quick unless there are complications. It takes but a few days until your skin has sealed and those staples can be removed. A few weeks until your muscle fibers have healed and a few months at most until both your sternum your broken ribs have fused. 6 months after surgery all structural damage should be healed completely.

The lung itself may take a few months to "settle" in its new habitat as well. Mostly because at first your chest is so beat up from surgery that even if you didn't mind the pain, you can't fully inhale and thus can't use those lungs to their full potential. And by the time you need a lung transplant, you'll probably have forgotten how to take really deep breathes anyway. So once your chest has healed up, you'll have to train your chest muscles and your breathing patterns before your new lungs reach their full capacity.

All this assuming you don't have any complications. But even the most healtiest of persons can expect some complications after a procedure such as this. Yet those who require a lung transplant aren't the healthiest of patients in the first place - quite the opposite. In many cases just survivng long enough to find a matching donor is a challenge in itself and complications of some kind are almost guaranteed. They may be small and insignificant, they may be severe and life-threatening.

Even though skin, muscles and bones all just need a bit of rest, a bit of luck and a few stitches/staples/screws to heal and your wounds should be healed up within a few months, most transplant centers will tell you that recovery after lung transplant takes 2 years.

The thing is, your immune system is a real weirdo. It doesn't like having strangers around and it can't be argued with. If it doesn't like something, it attacks. So initially you pretty much just beat your own immune system into submission by taking massive amounts of immunosuppressive drugs.

After a while you slowly reduce those drugs, carefully watching how your immune system reacts. If it remains calm, you pat it on the back by lowering the dose of those anti-rejection meds. If it starts to act up, you give it another beating.

It shouldn't surprise anybody that you and your immune system will never be able to trust each other again after a few months of doing this. It'll never forget those beatings, you'll never forget who tried to kill your beautiful new lungs. But after two years the two of you will reach a sort of cease fire.

Well, not really. You just establish a military occupation and drop a few bombs every time your immune system dares to protest. If you're lucky your bombs cause only minor collateral damage and your immune system backs down for a while. If you aren't, you've bombed nothing but civilians and your immune system is more angry than ever.

My point: "getting to grips with the medication" may sound easy and straight forward, but it isn't. Immunosuppression to avoid organ rejection after lung transplant is pretty much like occupying a foreign country: it is hard accomplish at first, gets a bit easier over time but becomes almost impossible to sustain in the long term.

EDIT I forgot to adress limitations...

And besides taking meds and being careful of your surroundings are there going to be any limits on your activities?

Yes, there are some. Extreme changes in pressure are one thing that can cause structural damage to your new lungs, especially to those sutures where they attach to your main bronchi. So no scuba diving or sky diving and probably no space travel either.

Sudden physical exercise is another thing to avoid. Due to severed nerves, your brain can no longer tell your heart to beat faster/slower. So your heart has to rely on hormon cues in your blood instead of nerve signals from your brain to adjust its rate, requiring more time to "ramp up" during exercise and more time to "ramp down" during rest. So if you suddenly go all (physically) crazy, your heart just won't react as fast and you'll end up exhausted no matter how well trained you are. Just as your heart will keep pumping at full speed even some time after you've stopped exercising.

Coughing is another limitation. Our airways are covered with small "hairs" that detect any foreign particles and cause a coughing reflex to get rid of such intruders. Transplanted lungs have those "hairs" as well, but when they're irritated they can't communicate that to the rest of your body. You no longer feel the urge to cough if your lungs are congested, you in fact don't even feel that they're congested in the first place until mucus reaches your trachea. So you have to consciously cough if you suspect there may be something clogging up your airways.

thank so much for your reply, you've been the most informative participant in both AMA's by far. I would guild your comment in a heartbeat if - im sure you can understand - my finances weren't on a hold considering my situation. Thanks again so much Ramjid!

well to start off i will have now full blown diabetes due to some of the medication (cortizon) i will be taking that will boost my blood sugar. i will need insulin shots and to be aware of what i eat. Of course i will have to be careful about infections, listen to my body and never forget any medication as it could easily kill me.

One of the strategies i decided on doing is use some sound clips from Botchamania as reminder alarms for my meds on my phone. i'm sure hearing Zandig yell "AAARGH YOU'RE GONNA DIE" and "JEEZUS!" at me will be the best motivation i can get to make sure i take my meds and not get killed by an angry tanned muscly Spagget lookalike, or rejection.

Smoking, yay or nay?

Thoughts when you see someone smoking a cigarette?

"Please get away from me." i will try to stay away from them as well, but i have always been vocal about people smoking in public areas, especially when you have to stand around such as the waiting line for a bus, or in front of a restaurant. If you want to make bad, health-risky decisions for yourself, be my guest, but in no way do i have to feel like crap - or even be in pain when it comes to having cystic fibrosis and secondary smoke - because you do.

My kids have a friend with CF, he's 6 and he'll straight-up ask "Why are you trying to kill me?" if someone starts smoking around him.

that kid rules.

Hell no! Smoking sucks.

So, do you have "16 23 32" on your other knuckles?

"16 23 *42". you got me! I was actually joking with a fellow lost fanatic friend yesterday that if i had have that tattoo on my chest Hurley might've just busted open into the operating room right before surgery yelling "DON'T OPEN HIM! THE NUMBERS ARE BAD!"

Are you home or still in hospital?

still in the hospital, i should be here for at least 2 weeks and a half still. i was moved from the ICU to the transplant recovery ward on monday, ill be staying here for 2 weeks or so if everything goes well, then i'll be at home for 2-3 months in recovery.

I was wondering if french or english was your first language, but now I know! "2 weeks and a half" is such a french phrasing, it's "2 and a half weeks" normally ;)

grats on the surgery, good luck with the nerves, and I hope those lungs don't reject for a hundred years.

(also if English is your native language, sorry for being a dick :)

That's just Quebec English though. Regardless of our first language we pick up on common "mistakes" and it becomes part of our vocabulary.

"Pass the broom/mop/vacuum" is the most common

let's all make peace and go to the depanneur guys :)

First off, congrats on the successful surgery!

Since most of us have no idea what it feels like, and you're in a pretty unique position to do this, how does breathing with normal lungs compare with CF lungs? Is it possible to actually describe the difference? And how was that first breath when they pulled the ventilator?

i was expecting a major difference but i couldn't really see one to be honest. What the doctor explained is that after surgery the new lungs are so atrophied, like a raisin, that they need to gradually expand to get back to the normal size they were in the living donor. So basically my first breath felt quite similar to breathig with my old lungs, although i did feel a lot more oxygenated. I used to saturate (blood oxygen) at 84% at rest before surgery, and after sugery my first saturation test came up with an 96%. today im between 97 and 100%, and i can definetely feel it. its amazing to feel every breath rejuvenates you rather than exhausts you.

(Reference: normal saturation is considered to be 95%, under 92% is considered low oxygen saturation)

Who is takeing care of you ?your girlfriend mother someone else

My mom is going to be taking care of me once i get home and have been incredibly supporting so far. Wouldn't be here without her and her love.

Sorry for the lack of update today everyone! i had to run a bunch of tests today, had 2 of my tubes removed this morning and i feel much lighter. kind of feel like i'm starting to lose those virtual chest gains. at least i feel better! Also gained 7 pounds since surgery, very, VERY motivating considering weight gain was my biggest issue with cystic fibrosis prior to surgery.

Ready to answer all your questions. gonna start with the ones that were posted through the day but feel free to ask more!