I was diagnosed with Cystic Fibrosis (CF) at age one. Started dancing at age 6, and danced for 20 years until I got really sick and was reliant on oxygen to breathe. I was on the transplant list for two years and finally got new lungs on May 31, 2013! I have danced around the world and will take my first ballet class again on December 2. Here is a link to a piece I did a few years ago when I was on oxygen. https://www.youtube.com/watch?v=tuLDm1XKiGU

I am also a recovering addict with over 3 years clean thanks to a life saving 12-step program.

Comments: 112 • Responses: 50  • Date: 

nid117 karma

Congrats on the new lungs! Sounds like you've had a crazy life. Probs the most random unrelated question, but what makes you happy nowadays?

cfdansir6 karma

Thanks! Well, I love the arts. I try to stay involved as much as possible today. I am also currently working on a one-man show for next summer which is keeping me busy and happy!

dangerdark1 karma


cfdansir1 karma

My name is Adam. Mark was the choreographer of that piece. But HELLO!!

dangerdark1 karma

Don't forget to take your cod liver oil.

cfdansir1 karma

Haha. Thanks. Yep got my fish oil too!!

Jeygasm5 karma

Had a scan of the q's and cant find this so sorry if its asked already, and im honestly just asking because im curious, dont want to cause trouble:

What do you feel about the opinion that addicts at any stage, should not be given organs?

Sorry its so crudely worded. Any one that has had an addiction of any kind, for the rest of their life is in "recovery" or "ex" ex-smoker, recovering addict etc. Which implies they will go back and "waste" the organ, taking it from someone who has never put anything bad in their body who may potentially die waiting.

Props though man for not giving up on what you love doing! I personally know people who would let LESS get in the way.

cfdansir3 karma

Great question. Organ donation is very strict about addiction. I had to be 6 months clean before they would even begin to consider me for testing and such to get on the list. Just like most people though, we make mistakes. They're pretty open-minded and are supportive as long as we are dedicated to staying clean.

That's how I feel too. A lot of us mess up in life. It's how we react and respond to these mistakes that shows the kind of person that we are. This of course is my own opinion. Many would say that I made bad choices and shouldn't be listed above others that didn't abuse drugs. I understand that point of view as well. I just knew I had to make a change and stayed dedicated to being clean and getting on that list. Life works sometimes luckily. Thanks for asking.

alice-in-canada-land2 karma

May I ask, to what were you addicted?

cfdansir3 karma

Pain killers (opiates) were my drug of choice. I get terrible sinus headaches and that's how it started. Then when I got really sick and had to go on disability and required oxygen to breathe, my using went way up, very quickly. After about 3 years my wife left me and I decided to get help and did 30 days in an in-patient rehab facility. Been clean ever since.

It's a struggle still since I have operations a lot that require pain meds. I stay in contact with my sponsor and support group and even have 12 step meetings in my hospital room when necessary. Thanks to my on-going recovery from addiction I have some tremendous people in my life today. Getting through all the things I've faced was only possible because I didn't have to go through it alone.

Sorry for the long answer. Hehe

mattymaniac2 karma

I am a respiratory therapist and have had an interest in cystic fibrosis for quite some time. What did the medical professionals involved in your care say about your long term life? Do they expect you to live long or is this a fix for a certain range of short to midterm years?

Also, being a pulmonary condition I know you had respiratory therapists care for you, please show them appreciation, we are the underground specialists that nobody gives credit to or even a knowledgedges. I hope you live a very long and prosperous beautiful life. >Pain killers (opiates) were my drug of choice. I get terrible sinus headaches and that's how it started. Then when I got really sick and had to go on disability and required oxygen to breathe, my using went way up, very quickly. After about 3 years my wife left me and I decided to get help and did 30 days in an in-patient rehab facility. Been clean ever since.

It's a struggle still since I have operations a lot that require pain meds. I stay in contact with my sponsor and support group and even have 12 step meetings in my hospital room when necessary. Thanks to my on-going recovery from addiction I have some tremendous people in my life today. Getting through all the things I've faced was only possible because I didn't have to go through it alone.

cfdansir2 karma

I'm not just saying this to kiss your ass but RT's are my favorite! I have an RT named Melinda who is practically family! I've known her my whole life and she even comes to my performances. But the thing I like most about RT's is that you guys are pretty down to earth. Dieticians, docs, phlebotomists, etc can be a bit... off. RT's are pretty kicked back and real. I have some RT's that bring me new pirated movies each day because they know how bored we get. I don't endorse prating but it helps when you're stuck in a hospital bed and can't get to the movies.

Good question about life span. Yeah lung transplants are considered extensions of quality of life not extensions of life. The average life span of a successful lung transplant recipient is 5 years. Less than 10% make it to 10 years. But I get to spend a majority of those years off oxygen and with a much better quality of life. I was gonna die soon anyway, now I get to do it as an active member of life. But in all honesty, I don't live by statistics. I plan on breaking some records. Haha ;-) Much thanks to another RT! Hope I answered everything you were looking for. Keep up the good work RT!!!!

mattymaniac1 karma

That is why I asked the question, Im aware of the goal of a transplant. That is one of my favorite things about my job, in pulmonary rehab we strive to increase quality of life, not to just young people but geriatrics also. When hospitals and sub-acutes give up, we assess, evaluate and aggressively work on quality of life.
Also I think the reason we are so down to earth is because of the reason I chose respiratory, we help deliver babys and we turn off life support, caregivers from beginning to end.

cfdansir1 karma

Yeah that makes a lot of sense. You guys do get to see a little bit of everything in the hospital from the emergency room to the NICU. That's great that your focus is quality of life. That is everything. It applies to everyone but can be extremely difficult for those facing early mortality. I am thankful for people like you.

Jeygasm2 karma

Love the answer. Hope if youre able to you can donate when your time comes too! I am of the firm belief that if you expect an organ/blood you better be willing to give in return. Regardless of any addiction in the past

cfdansir2 karma

Absolutely. I would donate in a heartbeat. Unfortunately I'm not allowed to donate blood or organs due to my health situation. But I am offering my body for research. I agree, you should give back what has been so graciously given to you.


Does having new lungs mean Cystic Fibrosis wont be a problem again? Or is it just a time extender?

cfdansir8 karma

Good question. My biggest challenge now is warding off rejection. Even though my lungs don't have CF, they can still get infected and struggle with surviving.

But post-transplant is mostly about prolonging the start of rejection for as long as possible. Rejection is now what I will most likely die of. Average life span post-transplant is 5 years. Less than 10% make it 10 years. So we have to be very careful about doing our meds religiously and living cautiously as to not get infection.

Lung transplantation has the lowest survival rate because it's the only transplantable organ with open air access (from breathing outside air). Transplant is not considered an extension of life but rather an extension of quality of life. Trust me, living without oxygen and being able to be active in the world makes this process totally worth it even if my life span doesn't increase much.

Kourageous1 karma

Wait so you're saying that you have basically about 5 years left, ten if you're lucky?

sobodash6 karma


cfdansir1 karma

Sobodash, are you a fellow CFer?

cfdansir3 karma

Sobodash was right about life span and everything after transplant. According to statistics, yes I only have 5-10 years left. But I don't believe in the numbers. Hopefully I can break some records. ;-)

I am very careful today about hand washing and wearing a mask when in a large crowded room (like a movie theater). There are certain things I can't do anymore, drink tap water, eat sushi, get more tattoos... but small prices to pay for a new lease on life. Thank you for your interest in my story, feel free to ask me anything. I don't think sobodash meant to come across rudely but no worries, ask away!

Kourageous1 karma

I'm in a similar but not quite as severe situation about cleanliness. I have to take two separate immunosuppressants to combat my Crohn's disease and I definitely agree it is a small price to pay. You've got an incredibly positive attitude it seems and that's one of the biggest factors to me in staying healthy for as long as possible, so I think you've got about a good a shot as you could hope for.

cfdansir1 karma

Which immunosuppressants do you take? Prograf, Rapamune, Cellcept? I think you're absolutely right, it's all about frame of mind. I find life rarely has the same agenda as me so I try to roll with the punches. It seems you overcome your Crohn's one day at a time as well by keeping a positive attitude. It is crucial even if you don't suffer from a physical ailment. We can find joy in life in the midst of the most dire and difficult conditions. It's all about perspective. I'm not saying I've lived every day like this. I've had some dark and depressed years but life is a rollercoaster and now I have a great support group and better tools to cope during the hard times. How long ago were you diagnosed with Crohn's disease?

dpad853 karma

As a fellow CFer, congratulations on the lungs! Your post-transplant med doses will, hopefully, gradually go down as your body decides what the minimum it needs of the immune-suppression meds to keep from rejection setting in. That all depends on how your doctors look at matters.

-How long were you hospitalized after transplant? -How was it that first moment you realized you didn't need oxygen? Did you keep feeling like something was missing when the cannulas weren't a fixture?

-How often do you look around the house at your aerosol medications, the Vest, and go "Look at all this shit I don't need anymore!" ?

cfdansir7 karma

Oh man, such great questions. I can definitely tell I'm talking with another CFer! Yeah my medication amounts go up and down depending on prograf trough levels and rejection requiring more prednisone. Always an adjustment. Took some time but I got the routine down now.

I was hospitalized for 17 days at UCLA after my transplant.

The first moment without oxygen: funny story actually- I didn't want to take off the oxygen on the morning of day 2. So that afternoon my nurse Katelin said, "Hey Adam you know how you didn't want to take your O2 off? Well it's been turned off since this morning. You've been breathing with 100% air for over 6 hours now. I took off my cannula, handed it to her, and wept. I couldn't stop crying. I never thought that would ever happen again. Unreal man. It's funny though, I kept my O2 cannula with me as a safety net for weeks even thought I never used it. Took some adjustment. I still reach for it at my nose or reach for my tank when I get up. Crazy!

I still can't believe I don't use any of the machines at my place. No vest, no nebulizer, no bipap, no feeding tube... the list goes on. I couldn't be more grateful for this amazing gift I've received!!

dpad853 karma

The O2 realization is eerily like mine. I was in recovery for the first week after transplant and had the oxygen on 1LPM and fell asleep for a nap - nurse came in and turned it off while I was asleep.

I woke up thinking I was hitting 99-100 saturation on only 1L, nurse comes in and says it's been off for a while. Felt extremely happy and relaxed realizing I was pulling 100% saturation on room air. "It's been a long time since I've been able to do that" was the first thing out of my mouth upon realizing it.

Realized conversations are a whole lot quieter since you're not coughing as much, haven't ya?

EDIT: On a med note, are you on Cellcept or Rapamune to compliment the Prograf?

cfdansir2 karma

Haha. Sounds like the oxygen game of trickery is a popular one after transplant! To answer your question, I take Cellcept, 1,000 mg twice a day. Which do you take?

Yes, conversations are MUCH quieter, and I can sneak up on my friends now! They used to hear me and my tank coming a mile away. I would love to hear more of your story. How long ago was your transplant. How are you doing currently with rejection, infection, etc?

cfdansir1 karma

How long were you hospitalized after transplant?

RachCork1 karma

As a respiratory physio, I can tell you the oxygen trickery game is popular with lots of people!! We're very sneaky!

But seriously, it's good to be able to tell a patient that they've done without it for a few hours already, rather than say "ok, we're turning down your oxygen now", which sounds scary and will just stress you out to the point that you need the oxygen!

I've worked with CF a lot and I'm absolutely delighted for you. It sounds like you're really making the most of everything.

Good luck with your first class back!

cfdansir1 karma

Haha! That totally makes sense. That's exactly how it was for me. Once I found out it had been turned off, the fear of removing the cannula was gone.

Thanks to an RP comrade! I'm looking forward my first class (one month from today)! Thank you and keep up the good work saving our lives!!

venuslight2 karma

How does CF affect you, aside from your lungs? Is it all secretions?

And congrats on those lungs and your sobriety!!

cfdansir2 karma

Due to CF my pancreas doesn't work well so I take digestive enzymes with each meal which is no biggie. There are a couple other little things but the real damage is with the lungs. These lungs will never have CF but can still get infected and would struggle with the recovery.

Thanks for the congrats! Life is full of surprises :-)

parasitic_spin2 karma

How much strength/endurance do you have now? What kind of physical therapy did you do? Can you dance yet?

cfdansir7 karma

On the day of my transplant I had 20% lung capacity and weighed 114 pounds. My current lung capacity is 91% and I weigh 137. I had 10 weeks of physical therapy for 90 minutes at UCLA twice a week. They start you out slow with the treadmill, bike, arm and chest movements, etc. And only let you lift up to 5 pounds.

I'm still working on building up the stamina at the gym(treadmill, bike, etc). Can't dance or workout hard with weights and stuff for the first 6 months after transplant. But once December hits, it's on!

parasitic_spin2 karma

May I ask how tall you are? Those weights sound scary low!

How much does a double lung transplant hurt?

Do you know why your CF flared to the point of needing the transplant? You went from being fitter than anyone to being in a lot of trouble pretty quickly.

I really admire you sharing your story.

cfdansir4 karma

Wow, thank you. I appreciate that. I am 5'7". Not real tall but it was still life-threatening. I had a tube in my stomach for a few years that I would hook up to a machine at night that dispensed 2,500 extra calories over 8 hours every night to help me get my weight up. No more tubes today!

The first couple days post-transplant were VERY painful. They had to hook up an epidural in my upper back that sent pain meds directly to the point of pain. After that, the pain was not gone but it was bearable.

CF can turn on you quickly. My doctors always said that they were thrilled how active and well I was doing but to beware, it can change overnight practically. Even though I heard the words I wasn't prepared. I fell into a deep 3 year depression when I got so sick so quickly and had to stop dancing, teaching, and choreographing. My last show before I had to stop, I was at 35% lung capacity and had to crawl off the stage after the curtain call. It was a hard time in my life.

parasitic_spin5 karma

Does the transplant "cure" CF?

cfdansir6 karma

Good question. No, unfortunately I still have CF but my lungs do not. The biggest thing to be careful of now is rejection and infection. The average life span for a successful lung transplant is about 5 years. Less than 10% make it to ten years. SO there's still a lot of danger but in different ways. But my life is sooo different now without the oxygen and everything I don't regret it for a minute!!

parasitic_spin2 karma

I absolutely believe with your drive you will blow away those stats.

cfdansir3 karma

Thank you. I don't believe in numbers anyway ;-)

I know some people that are 20 years out and still kicking! Who knows? All I know is that every day of breath I get now is a gift. This whole experience has definitely helped me find a new level of gratitude in life.

Mrtn922 karma

Hey cool video! I like that you just do it no matter the drawbacks! I really like dancing, especially big free movements, and I have to say I find it really inspiring. Only thing is I am 21 and male so it might be too late and I am not sure I would like to be known as a ballet dancer haha

mortuusanima2 karma

Taking ballet recreationally can be really fun too. You can take a beginner adult class and go from there.

You'd probably have a lot of fun too. As a guy you'll be able to do the big jumps easily because of your legs. You'll fly. And I can tell you there's no better feeling.

cfdansir2 karma

Absolutely!! Everything mort said! There's nothing like it in the world!!!

cfdansir1 karma

It's never too late to start. Adult classes are fun too! And you don't have to take ballet either. Jazz, modern, hip-hop, the possibilities are endless. Just try it and if it makes you happy... GREAT!!!

loritree2 karma

So, would you suggest that everyone try to be an organ donor?

cfdansir5 karma

Yeah I think everyone should consider it that are able to. There's a lot that goes into the matching process but I can tell you that a 25 year-old male I never met gave me the greatest gift I've ever received. Life saving, life changing... unbelievable. But I know some people have other reasons not to donate whether it be religious or other and I don't want to get in the way of that. But I encourage everyone to consider it.

betafemanon2 karma

Hi!!! Congratulations on your new lungs! Good luck to you! What is your favorite song to dance to?

cfdansir2 karma

Oh man, tough question. So many choices. I loved dancing to Vivaldi's "Four Seasons." A song that I have yet to dance or choreograph to will be my next project. "Flugufrelsarrin" by Kronos Quartet is absolutely amazing! It's actually a remake of a song by Sigur Ros. I can't wait to jump into that!

mortuusanima1 karma

I cheered out loud when you threw away the hose and did a quad pirouette! And those were a beautiful, and effortless looking pirouettes.

That was just so amazing.

cfdansir1 karma

Wow, thank you! I've always been a turner. Haha. A fellow dancer I presume?

mortuusanima1 karma

Yeah. I do it recreationally now. I was going to go professional but found it too challenging (not the dance part, the supporting myself part LOL) I haven't been in class regularly for a number of years now because I was attending school, now I just need to get a job so I can pay for it.

It was just so lovely to see someone so passionate about dance that literally nothing is stopping them! I mean going on stage with an oxygen tank! I sent the video to my good friend (and former dance teacher) who is a professional, I just know she'll use you for a "No excuses" statement at some point.

But the thing that really got me was how beautiful it was. You went full freaking out, that was not a mark. Just simple and pure and STRONG. I feel like some people might not understand how strong you are in that piece. You do make it look effortless, but I know it's not. And that's what blows my mind.

I really have to say I'm craving a class now.

Great work! Keep us updated!

cfdansir1 karma

Oh wow, thank you so much! Your words really meant a lot to me. I'm so glad you enjoyed the piece. It was a lot of work but is an experience I will NEVER forget. I hope your former dance teacher will enjoy it as well.

You definitely gotta get back in class! I can hear the love and passion for dance in your words. Get that job and get your butt back to the barre! Lol. Nah, I know that's way easier said than done. Please keep me posted and let me know when you get back in class. My first class will be on December 2nd (only a month away), perhaps we can share similar stories next month! Please keep me posted fellow dance lover!

tknelms1 karma

Favorite ballet to dance in? To watch?

cfdansir2 karma

I loved being Renfield (Dracula's bug eating minion) in Dracula. Such a fun and crazy character. It was a blast.

My favorite full length ballet is Matthew Bourne's Swan Lake. It's the men's rendition featured at the end of the film Billy Elliot. If you ever get the chance, go see it! It was my family's favorite as well and they are not dancers.

Honestly though, contemporary ballet is my favorite. My favorite piece is called "Minus 16" choreographed by Ohad Naharin. Freaking fantastic!!

Floodman111 karma

How do you see the state of CF treatments at the moment? Do you think it's possible for a definite cure in the near future? What are the largest difficulties about living with CF?

My SO has a cousin who is suffering from CF and I've been doing my best to learn about the disease and understand it's effects and symptoms. Congrats on your new lungs!

cfdansir1 karma

Treatments have come a LONG way over the past 30 years. When I was born the average age of a CFer was 9 years. Now it's 37! Medicine has come a long way and if you stay dedicated to doing your treatments, it really will extend your life. Treatments are long and boring but they will save your life.

As far as a cure, I don't know if we will see it in our lifetime. My whole doctors have been "only ten years away from a cure." But they have identified the gene and come a long way so who knows. I'm not holding my breath though. I'm just living for today.

The biggest difficulty with CF is that everything is harder. I was dancing with half the lung capacity as my peers growing up. With 50% lung capacity, EVERYTHING is twice as hard. We struggle with constant lung infections and pneumonia which really slow us down. And all the hospitalizations can get really old pretty quick. But thank God we have treatments today to make life a little easier.

I think that's great that you are trying to learn as much as you can about CF. How is your SO's cousin doing?

Floodman111 karma

Thanks for your reply! He's 12 or 13 I think and has been in and out of hospital over the past few months. Apparently he's been on a lot of steroids to combat the disease, but he was recently denied access to a drug that is being developed. Last I heard he wasn't doing super well :/

cfdansir1 karma

I'm sorry to hear that. I hope this is just a bad time for him right now and that he gets through it. Steroids can be brutal on the body, so many side effects and reactions. But it does help us in the end. My love and best wishes go out to you, to him and to his family.

acompletesmeghead1 karma

You are amazing man, keep on fighting the good fight!

cfdansir1 karma

Thank you! Will do!

jenny711 karma

You should be proud of your self all you have been through I have a brother how dances with royal Canadian ballet co and has faced many hard times to it goes to proof you can do any thing you set your mind to

cfdansir1 karma

Thanks. Yeah I think you're right. If we're willing to work as hard as possible for something, we can achieve it. That's really cool about your brother! I have a friend that danced with the National Ballet of Canada. They may know each other. I bet your brother has been through a lot. The life of a ballet dancer can be really rough.

HinterlandHominid1 karma


cfdansir3 karma

All I know is that my donor was a 25 year old male and was 5'10" tall. I would love to more but we'll see. After a year I can write a letter to the family. I give UCLA the letter and they forward it to the family. After that the family can choose whether or not they wish to continue correspondence. I hope my donor family will respond. Time will tell.

I know some organ recipients that are very close with their donor families today. One woman attends a Donate Life marathon with the donor's family every year to help raise money for organ transplantation. Pretty amazing. We will see what happens when I write them in 7 months.

Laurashrti1 karma

I hope they reply to you. This is probably weird, but I'd love to know how it turns out.

cfdansir1 karma

No I totally understand. I promise to update you under this script when I find out in half a year or so. :-)

Imiod1 karma

Ballet dancer Male Cystic Fibrosis Lung Transplant

How improbable are you?

cfdansir3 karma

Haha. Thanks. I was lucky enough to have doctors and family that always encouraged me to be as active as possible and let me do whatever made me happy. In the early 80's most doctors told the parents of CFers to not push their child too much physically. My doctor had a different approach. "Let him live life and he will tell you what he can/can't do." Thank you Dr. Dooley!!

bishagogo1 karma

Wait, this isn't r/circlejerk??

cfdansir2 karma

Lol. No that's in between r/enormousego and r/patsontheback. I see your point though. Well put.

epicluca1 karma

My little sister has Cystic Fibrosis too, I think it's great you're doing ballet and you should keep it up and never give up

cfdansir1 karma

Thanks luca! Dance has definitely kept me alive. I feel very fortunate that I fell in love with something athletic. Don't worry, I don't plan on ever stopping! Does your little sister stay active or play any sports? How is she doing? She's lucky to have a supportive sibling like you. My brother was the same way. We are very fortunate.

epicluca1 karma

She's only 1 at the moment but she's constantly smiling and having a good time in general, she's really lucky because she hasn't had many problems with it, apart from the bloody doctors never having her medicine on time!

cfdansir2 karma

I'm glad she's doing well so far. Yeah working with the docs and pharmacies, etc can be a real pain in the ass. As her parents get more and more experience they'll be able to figure out how to work the system a little bit. Once you learn how it works and refuse to take no as an answer, it should get easier. I've found also that if you call every day over and over they will eventually help you just to get you off their back. Whatever it takes. Haha.

She's gonna have some hard times ahead but with loving and supportive family and friends, she can get through it. My best to them and to you! Thanks for your inquiry.

Parrot_Face_211 karma

How was the recovery from the surgery?

cfdansir3 karma

The first couple days were pretty brutal after waking up from the surgery. Lots of pain. But then it gets easier. On day 2 I walked for the first time and didn't even require a walker for assistance. Here's a link to the short video. https://www.youtube.com/watch?v=ESLbGW05sdk

I spent 17 days in the hospital and then rehabilitated at my mom's house for 6 weeks before going back to my place. But I was pretty mobile by that point. It's the light working out that's frustrating. It's like starting over from the beginning. Up to 2.5 miles a day on the treadmill now. Still a work in progress though.

The hardest part was learning all the medications. Over 60 pills a day now. Took a lot of practice.

parasitic_spin1 karma

How long will you take the 60?

cfdansir1 karma

Probably for about the first year. After that, the amount of each drug may reduce but the least I'll ever take is about 40. But at this point taking a few extra pills a day is a small price to pay! :-)

Parrot_Face_211 karma

Holey smokes! You look fabulous walking around 2 days post-op! I can't imagine taking 60 pills a day, amazing that anyone can keep that straight. :D

cfdansir2 karma

Thank you. Yeah when I was in the hospital, the nurse coordinator would come in every day and quiz me and help me learn the medication regimen. The last day he comes in and doesn't say a thing. It's all on us to prepare the meds while he watches to make sure we're ready. So luckily I had had a lot of practice by the time I got home. It was super overwhelming in the beginning though. Haha

marlaaahh1 karma

Hello! My girlfriend is a fellow CFer and unfortunately is not eligible for a transplant due to a bacteria in her lungs. How do you feel about someone with CF being ineligible for a transplant?

cfdansir1 karma

Oh man I am so sorry to hear that. Is it the bacteria Burkelderia Cepaccia also known as B. Cepaccia? They told me if I got that that I would become ineligible as well.

That was my biggest fear while sitting on the list. It breaks my heart to hear that she is ineligible. How is she doing? What is her lung capacity at? You are a wonderful guy to stand by her during all of this. I have an amazing girlfriend too that I met while on oxygen. You guys are awesome, and few and far between.

I hate that people can become ineligible, there were a few times that I was taken off the list because I was "too sick" at the time. I understand why they have to do it but it still sucks... big time. My love and best wishes go out to you and your girlfriend.

Agi1cro1 karma

I think the whole community thanks you for sharing such a touching life-story to us! It really shows, how important it is to live a life for every day :) You´re definitely right! don´t listen to that dumb numbers, when you have the will for something, you can do almost everything! I just want to say thank you, good luck in your following life :)

cfdansir2 karma

Thank you so much. I am grateful to have a lot of wonderful people in my life which is how I get through all of this. I wish you good luck as well! Thanks again for your kind words :-)

Tsmeuoath1 karma

Do people confuse your condition with min, Cystinosis? They always confuse Cystinosis with Cystic Fibrosis.

cfdansir1 karma

Actually I don't think I've ever had anyone confuse it with Cystinosis. They confuse it with pulmonary fibrosis and COPD. I'm sorry I'm not too familiar with your condition. What is Cystinosis and how are you doing?

weird_kid_at_school1 karma


cfdansir3 karma

Walking around without my oxygen tank! Haha. Nah but for real, I'm a movie freak. Love me some indie films! I live about an hour from L.A. so a lot of times I'll drive out there to see the lower budget independent films.

I also attend a lot of 12-step meetings and spend time with my sponsor and other people in recovery. I love to work with guys that I sponsor.

Mr_Monster1 karma

What takes your breath away quicker, Italian fouettes en pointe or your CF?

cfdansir1 karma

Haha. I'm gonna have to go with the CF but the fouettes are a close second.

Butzz-6 karma

I'm glad it makes you happy and that you're doing better but that video you posted has to be the stupidest thing I've ever seen.

cfdansir4 karma

I'm sorry you didn't enjoy the video. Art is all about taking risks and doesn't always rub people the right way. It was quite a freeing experience and was all I had to give at the time. May I ask why you felt it was so stupid?

Butzz-5 karma

The dancing. The seriousness of a grown man flailing about to classical music and pretentiousness of a single spotlight on an empty stage, it just looks like it's trying to be too intense and at the same time lighthearted. Basically the entire thing looks retarded. And I know the severity of your experience and the hope and positivity that you're trying to project is the source of that disparity but it just looks so... dumb, for lack of a better word.

cfdansir4 karma

Cool. Not a huge male-dancer fan I take it. No worries. I appreciate your honest criticism.

gnualmafuerte-16 karma

Life saving? 12 step programs are a replacement addiction, they replace the original drug addiction with something even worse, religion.

If you can't quit on your own, you should work on improving your self-control, not replacing an addiction with a much more sinister one.

Don't tell me it can't be done, I decided to quit (I was a very heavy user of cocaine and crack cocaine). Just one day I said "I don't want this anymore, it's doing more harm than good, and it's turned to the point where I don't enjoy it anymore". I quit that day and have been clean since 2009 (I used for ~5 years).

cfdansir7 karma

Well first of all I think it's awesome that you were able to stop using cold turkey like that. I had tried that many times and failed many times. This is the only thing that has worked for me so far so I'm gonna keep doing it.

I wasn't saying that people can't quit like you did, so I'm not sure where you got that from my post, but more power to you man. The 12 steps have also helped me find a new way to live without so much anger, fear, and resentment. If you don't feel that is something you need, more power to you. Not trying to teach brother, just letting you know what's worked for me. Congrats on your 5 years!

thisistheendoftimes3 karma


cfdansir1 karma

No to what exactly?