I'm 28 and have Idiopathic Pulmonary Fibrosis

[satchvai]

So sorry that you are going through this, gwapes. Regarding vaping, it may or may not have caused it. I try to remember that correlation does not imply causation more often than not. In the thirty seconds I read about your diagnosis, there seems to be a myriad of possible factors that could contribute to this condition.
Best of luck going forward, young man.

 

[QU1T]

Chill out guys, best of luck to the OP.

 

[Cacique]

I want to wish you the best, and I agree with everyone that you should get as many opinions and see as many doctors as you can possibly see. Some doctors just can't do crap when others can. My grandmother was going through uterine cancer in Puerto Rico, the doctors could do nothing but to offer my mother to rent the device, but had no one to use the device needed on my grandmother. After that they rushed her here to Orlando and she started getting better quite quickly, but unfortunately she could not survive the heart attack that took her little over 2 weeks ago.

There's no need to fight here at all over who's right or who's wrong. I hope you are able to get more professional opinions and hope that something really good can come of it. I've seen it many times, happened with my grandfather, where he was destined to die in a few months in the hospital, only to go to a different doctor who says he's perfectly fine, does the needed surgery and he's here and alive and it's been almost 14 years since that happened. Don't give up and keep searching! I wish you the best of lucks!

 

[mamabear15]

Thanks for having the courage to share your story so simply & vulnerably. I just want to say I'm sorry for your pain. I guess I'm not surprised that so many are responding in "defense" of vaping. I guess I can't blame anyone for wanting to take the chance to ask you questions... I am however a little disappointed that more people have not taken the time to show a little compassion. We as a community can take your story and use it as a launch point to do the research on our own - there are plenty of medical professionals on here, to begin with - in my not so humble opinion, this thread should be the place to say we support you, feel for you, and will be praying for you. Thanks for caring enough to put the info out there.

 

[AXIOM_1]

@gwapes6 ... First, let me say that I am sorry to hear about your condition. It sucks for sure! Second, let me state that I hate vaping health debates because there are many members on this forum who are dead set in their belief that vaping is not as harmful as it may in fact be. I have debated tooth and nail with a few folks here and even got a couple of threads shut down by the moderators because I stood my ground and got carried away with my mouth (keyboard )......I have always touted that it is better to err on the side of caution when putting substances into our bodies in areas where they do not belong. So, I didn't want to really jump into this thread as I am sure it will rub some people the wrong way, but no matter, because I will NOT debate back and get myself into trouble like I usually do. I will only state my beliefs and why.

I tend to believe the same way as the OP and here is why....

I don't think it is wise for people to place a bunch of things into their lungs besides air because it does not belong there. People always argue that air is polluted and that we are constantly breathing unhealthy substances. That may be true but we can't do much about that fact. Breathing in foreign substances like smoke or vapor is an intentional act that can be totally avoided. I do it even though I feel it is none too wise because of my addictive personality, plus I am just plain weird.

The human body is just too complex of an organism for this point in Mankind's medical knowledge. That being the case it would be unwise to base our health/lives off of a mere 6 years worth of vaping data and results. I have seen way too many times where medical researchers have tested a specific medication for years upon years and assumed that it was safe because all of their testing and results indicated that it is safe. Then years later people start getting diseases off of said medication, which is the very medication that was tested for years and thought to be totally safe. In other words, the researchers were just plain wrong. I have seen this scenario play out many times. Lots of folks have this false notion that certain medications are simply released into mainstream usage so that big Pharma can make tons of money off of it even though it may not be safe. While this may be the case in some situations, it certainly is not the case in all of these scenarios. Let's face it folks, the body is way too complicated and much is unknown at this point in time. There are lots of substances that can cause diseases to surface but only after a long period of time has passed.

You stated that you both smoked at one point and then vaped. You did not get sick until you vaped. Your particular disease has a genetic predisposition and marker to it. That being the case, and the fact that this disorder does not usually manifest itself until a person is older, is a pretty good indicator that a catalyst of some sort has triggered the genetic expression of the disease. But what catalyst? Well, it is known that smoking can trigger the expression. There may also be scores of other things that can trigger it that science does not yet know about. However, if we put any possible unknowns aside for the moment and looking at this logically, then there are only two likely candidates. Smoking or vaping. If you look at things in this light, then there is a 50% chance that smoking triggered it and a 50% chance that vaping triggered it. Of course this only holds true if we forget about any unknown triggers that science does not yet know about anyway. Which one of the two it may be is up for assumption but it is rather interesting how the expression got triggered as soon as you started vaping.

It is my opinion that in the near future we are going to start seeing more diseases surface in regards to health and vaping.... One of the troublesome diseases from smoking is that of lung cancer. It has been known for quite some time that smoking causes lung cancer. I have known lots of folks who have died from smoking related lung cancer, my Mother being one of them. Why am I mentioning lung cancer when it is currently thought that ejuice contains zero amounts of carcinogens? Because imagine the scenario where some vapers develop lung cancer and they were prior smokers. Of course, we can imagine what habit is going to get the blame and it will be smoking. But who is to say that vaping didn't trigger the cancer in the lungs of the ex smoker even though e juice is not known to contain many carcinogens? There are just too many unknowns and lack of knowledge about the complex cells of the body at this current time to think that vaping can't trigger cancer or trigger some other diseases (like yours).

+

 

[mamabear15]

In all love & care I would like you to please let me add...from someone who had stage 3b ovarian cancer at 24, tripled in size and spread in the course of 4 months... I looked dying in the face young too. From that experience I'll tell you - live. Moderators please excuse this language in this context but seriously: if anyone, doctor or otherwise, tells you you're about to die, get in your head the idea ".... 'em." You live to beat the odds. Don't accept the possibility of defeat. And don't you dare give up. It's gonna suck but it can be beat - you can beat it each day you beat their timeline, each day right now that you live to the fullest, each day you refuse to let fear and pain steal your joy in this moment you're alive. I'm crying for ya right now but I hope you can soon find a ray of joy for yourself to hang on to - because that my friend is how you live. Best wishes and you WILL be in my prayers daily.

PS after going to all the trouble to apologize to any mods for cursing, the software edited out my f-bomb. Ah well, you know what I really said. Lol

PPS to avoid any questions - yep cancer free now Second opinions, riskdsring treatments, pure cussed stubbornness, all of the above lol

 

[Marina2]

It's a natural thing for those who are grieving to lash out in anger. Just a normal phase of the process of grieving. Part of that may be to feel the need to blame something, anything for the source of this grief. It's a coping mechanism and all humans have or will go through it at one time or another.

To the op, I'm very sorry to hear what you are going through. I have a son your age and can't imagine what it would be like for him to suffer through what you are facing. I pray you have the strength to get through this and wish you well in your search for treatment. Don't give up and thank you for posting.

 

[Ou2mame]

I switched to vaping to help myself quit smoking because 10 years of guilt over smoking was enough. I imagine you had a similar experience, as have most of us here. I don't know much about your illness and I'm not going to super google educate myself enough to step into the argument, so I'll just say that I'm sorry you have this disease, especially considering the bleak outlook.

I know it's not the same thing, but I'm 33 and when I was 19 I had a heart attack and found that that I have a bad valve on top of it. 2 years later my dad had a heart attack. My mom died when I was 16 from lung cancer. I started smoking around the time my dad had his first of many heart surgeries, stupidly. I figured I was dying my mom was dead and my dad is dying too. He didn't have health ins, hospitals were turning him down for surgery, etc. Anyways, I'm turning 34 next month, something I didn't really plan on doing. My dad just turned 69, and has had a new heart for 4 years now. He had a mechanical heart with battery packs for 2 years prior because his heart finally gave out. He walked around the house connected to an extension cord. I don't know what's in my future, but I'll keep on pushing myself regardless. So basically I've been surrounded by some form of death for over half my life now, whether it was my own or both my parents. You never know what's going to happen, but you have to try to stay occupied and positive about it. What I realized was that we are all going to die, and in the grand scheme of things it doesn't matter if it's tomorrow or in 50 years. We are on a rock with puddles, spinning around a ball of fire, and we have very short lifespans. It absolutely sucks, but whatever time we have is all we have.

 

[Maiar]

Idiopathic Pulmonary Fibrosis doesn't even have any recognized root causes. Just certain things that increase the chances of getting it. Cigarette smoking is among the only accepted ways that dramatically increases your risks. And smoking can cause long term damage that may not show up or become symptomatic for years, even after quitting. So even though it became symptomatic while vaping or shortly after, the smoking is still most likely the culprit. Luckily there are treatments available to slow and sometimes halt the progression of the disease such as Pirfenidrone which should be getting approved for use in the states any time now if it hasn't already and has shown great potential in clinical trials.
I'm sorry for your diagnoses though. It's a heavy one to take. Take care.

 

[AXIOM_1]

@Maiar .... You make a good point about delayed symptomatic response and delayed disease progression from smoking and it is EXACTLY that delayed response that could possibly show up from vaping in the future........... The exact same things happen with smoking in regards to lung cancer. I know scores of people who developed lung cancer after having stopped smoking for many years. The simple fact of the matter is that whether it is IPF or cancer the diseases get triggered by a catalyst (mainly smoking and possibly other triggers).

When I was a young kid it was very rare to see a person get cancer. It was especially unheard of to see a young person or a child get cancer. Not so now days. Cancer treatment centers are now filled with juvenile cancer cases and 1 out of two people will get cancer some time in their life. These figures are shocking and disturbing. Obviously something has drastically changed between the time I was young and the current time and it is not very difficult to imagine what one of the main causes is....OURSELVES........ If you take a look at most all types of cancers, the known carcinogens and causative actions are mostly mad made. Industrialization and modernization have spurned the development of chemicals, products, junk food, medications, and many other substances that provide for modern and comfortable living only to find out later that they are a causative agent, or trigger, for killing us.

We did not create ourselves or the world(s) around us. The human body is vastly complex and almost without words. Take a look at just one single cell of the human body and the genetic code and information that it contains is mind boggling and takes powerful computers and software in order to help researches map sequences. If this isn't enough then there is the world(s) outside the human body in which science has barely even scratched the surface in knowledge. It is as if we have been placed into a giant and complex jig saw puzzle with the assignment of putting all of the pieces together before we can see the big picture. Will man ever complete the puzzle? There has been much speculation regarding that but it matters little at our current time regarding some of these diseases.

While it may seem I am against both man and science I am definitely not. I have been involved in science all of my life (in various subjects) and I love science. Science and man's quest to put the puzzle together is a wonderful thing and has led to all of the modern comforts. But herein lies the crux of the problem as I see it (quest for modern comforts). Man also has an ego and because of arrogance many folks (scientists and laymen alike) assume that because of our rapid increase and gains in knowledge that we can do just about anything imaginable. While this may be true (but I have my doubts) there is also a very large blind spot when it comes to humans and knowledge. The problem is that man does not have an understanding of just how huge the puzzle really is. The tiny amount of knowledge we have in comparison to the large puzzle we have all found ourselves in should be enough to break through the scientific arrogance of many folks, but it doesn't seem to. It is very arrogant for any scientist to think that he knows 100% about any chemical or compound let alone many aspects of the human body.

Anyway certainly do not want to ramble about cancer and scientific arrogance or hijack the thread but it is just food for thought and my own personal observations along the way.

I truly hope that the OP gets some type of peace of mind and can transition into the reality of what has happened to himself without losing all hope. I will be thinking of you gwapes6 and saying prayers for you (bank on that fact) ... Peace be with you all.

 

[TamiVapes]

Maybe it was the years of smoking. From a fellow spoonie, I'm so sorry, honey.

 

[TamiVapes]

I wouldn't blame obesity for this fatal disease that usually occurs in the elderly population.

 

[TamiVapes]

odd how someone can smoke 2-3 PAD for 40yrs and start vaping and end up with "lungs as clear as someone who doesnt smoke"... and then you see people who smoke for a few years and have serious issues...
hope things turn out better for you...

I'm chalking it up to bad luck.

 

[retired1]

As the OP can now post elsewhere in the forums, moved to Health, Safety and Vaping

 

[Toronnah]

I wish you well. My thoughts are with you.

 

[David Wolf]

Before my post gets bumped or gets a ton of hate, I just ask that you read what I have to say first.
About this time last year I started vaping after being smoke free for over a year and a half. I started with those Blu cigarrettes and moved on to an ego and eventually a IPV3. I probably tried more than 50 flavors and decided I liked the melon flavor from ECBLEND. Fast forward about 6 months and I started to have these weird bouts of feeling like there was air trapped in my lungs and I couldn't breathe out fully; I wasn't worried about it too much but decided to get a flavorless juice with low nicotine thinking I had an allergy to flavor.

Then I started having these scary bouts of breathlessness, i'm 366 lbs so I figured it was my fatness and continued to vape away until the breathlessness was accompanied by pain in my lungs. I stopped immediately and went and saw my pulmonary, he did a routine x-ray and he said that my right diaphragm was tented (this is when the diaphragm is no longer round but triangular in shape that is usually caused by scar tissue pulling the diaphragm up). This scared me but he ordered a CT and later a bronchoscopy to get a better look at my lungs telling me "Pulmonary Fibrosis is an old persons disease, I doubt you have it". During this time I had quit vaping but the bouts of breathlessness are getting worse and I wind up calling an ambulance a couple weeks later.

Anyways after another 5 months, a CT scan, Xray, and biopsy i've been diagnosed with Idiopathic Pulmonary Fibrosis and if you don't know IPF is a relentless progressive disease where the lungs harden over time and you lose the ability to absorb oxygen until you ultimately suffocate to death. There's no treatment options for me, my dr thinks I will remain stable enough to survive the wait for a lung transplant but even then I would be lucky to live more than 5 years.

I feel like a test subject, sometimes i'm in denial that vaping caused this, other times I feel i'm sure of it. I don't know if my previous 7 years of smoking contributed to it, or what but I do know this: IPF is as rare as Lou Gherigs disease and I got it in my twenties. The median age of IPF is 60>.

All I know is i'm 28 and I have the lungs of an old man with severe emphasyma. My forced vital capacity was at 71% last week. I constantly feel like I can't get enough air like there's a pillow over my face and if I think about it too much i'll have a panic attack.

Anyways you are all welcome to think what you want, call me a fluke, or whatever. My mom vapes and has been for years an has no problems, but always remember that this vaping .... is a beta test, and we're all the guinea pigs.

-Mike Laylee

I admire you for having the courage to post this. I wish you the best man, and said a prayer for you. Eat healthy foods get rest and get second opinions if you need. I consider vaping only better than all my any years of smoking and only the lesser of two evils.

 

[BigEgo]

OP, do you mind telling us what your setup is (sorry if you already posted that info). I ask because there is some indication that metal dust is one of the biggest risk factors for PF -- with nickel specifically mentioned in the literature. This study mentions metal dust as being a contributing factor in the sample population that was being studied in Japan (metal dust showed a risk factor even higher than smoking). That study references this study which postulates a specific mechanism of action of nickel in the lung. And there are numerous other studies discussing the link between metal dusts and PF.

I am not saying that this is what happened in your case, but I would be curious what type of coils you used. Personally, I would find it hard to believe that vaping for a few years exposed you to enough metal to matter. The people in these studies were life-long metal workers, miners, etc.

 

[DeAnna2112]

YOU have no idea how much reading I may have done. I did not in anyway tell you that you were wrong. YOu obviously have issues and your health is not what I am refering to.

THere is no need to attack. SO my guess is you only started this thread to jump on the first person who replied that it may not have anything to do with vaping..
I notiice that you completely ignored all of the very kind things I said. The comment about it maybe not being vape related is because you said you were blaming yourself.
Either you have a reading comprehension problem or your not a nice person or both.

Would you please stop...this person does not need this or deserve this...they have enough to deal with.

 

[gwapes6]

Hello everyone. I just want everyone to know i've been reading the posts. Since my first post i've been contacted by many people looking to use my story for their own agendas and are asking for my personal medical records of visits/tests/etc. I've even gotten a couple anonymous death threats telling me to keep my mouth shut. I want everyone to know that I have requested my records and plan to release them as soon as I can HERE not on some website or whatever. The only real delay is the 50$ fee to request the records in the first place. My condition is rapidly worsening and I am so breathless that I can hardly function. This .... is no joke man. The constant shortness of breath is not only bothersome but absolutely terrifying. What I didn't know is that it's not bad enough that you feel like you can't get any air with lung disease BUT it becomes harder and harder to TAKE A BREATH; that has been the most scary part in all this. The best way to describe it is hold your breath until you get that 'emergency' feeling that you need to take a breath, now hold it for about 10 seconds longer and that's my baseline. I cry my eyes out every single day but lately I don't have the breath so the tears just fall. I just got back from the ER a couple days ago where I went for a breathing treatment and I wound up catching a head cold that turned into pneumonia because I have lost a lot of coughing power. Anyways, the addiction of smoking/vaping is nothing compared to the constant feeling of suffocation that literally disabled my life. I just can't get over how ....ed up it is that we don't feel breathless until irreversible damage has already occured. For being so important and vital, our lungs should be able to repair themselves for god sakes.

 

[Katmar]

Hello everyone. I just want everyone to know i've been reading the posts. Since my first post i've been contacted by many people looking to use my story for their own agendas and are asking for my personal medical records of visits/tests/etc. I've even gotten a couple anonymous death threats telling me to keep my mouth shut. I want everyone to know that I have requested my records and plan to release them as soon as I can HERE not on some website or whatever. The only real delay is the 50$ fee to request the records in the first place. My condition is rapidly worsening and I am so breathless that I can hardly function. This .... is no joke man. The constant shortness of breath is not only bothersome but absolutely terrifying. What I didn't know is that it's not bad enough that you feel like you can't get any air with lung disease BUT it becomes harder and harder to TAKE A BREATH; that has been the most scary part in all this. The best way to describe it is hold your breath until you get that 'emergency' feeling that you need to take a breath, now hold it for about 10 seconds longer and that's my baseline. I cry my eyes out every single day but lately I don't have the breath so the tears just fall. I just got back from the ER a couple days ago where I went for a breathing treatment and I wound up catching a head cold that turned into pneumonia because I have lost a lot of coughing power. Anyways, the addiction of smoking/vaping is nothing compared to the constant feeling of suffocation that literally disabled my life. I just can't get over how ....ed up it is that we don't feel breathless until irreversible damage has already occured. For being so important and vital, our lungs should be able to repair themselves for god sakes.

Sending good wishes that you soon feel better....