I'm 28 and have Idiopathic Pulmonary Fibrosis

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gwapes6

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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
 

RandyF

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Years of being over-weight (I'm guessing, no offense intended), smoking for 7 years and you are leaning towards your last year of vaping as the cause? You are right in the fact we are all the guinea pigs, but come on man, there are just too many other factors to consider here. I am sorry for your diagnosis, I truly hope things take a upward turn for you.
 

gwapes6

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The only reason why I lean towards vaping is because it was what I was doing during the onset of my symptoms. Obesity has nothing to do with IPF though smoking is certainly a risk factor. Do what you will with my information, i'm certainly not here to deter anyone from vaping but to put my story out there.
 

Sir2fyablyNutz

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pennysmalls

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gwapes, I'm sorry for your diagnosis, it must be very difficult. While reading your post I was wondering...do you have any other symptoms? The reason I ask is because I had an issue with one of my eyes a few years back and was told the cause was inflammatory arthritis but I had not experienced any arthritis type symptoms at that time. That's changed and I do believe I am experiencing the beginning of a connective tissue disease. Be on the lookout for other symptoms you may be experiencing that could be masked by your weight. You may be experiencing the beginnings of something as yet undiscovered.
 
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pennysmalls

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gwapes, it might not be a bad idea to visit a rheumatologist and just get an opinion and have some blood work done. I don't know if finding the cause would help at this point but if something is found by the rheumatologist at least you would know. Not knowing can sometimes be worse than knowing.
 

Amraann

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I am very sorry about your diagnosis.

I have no idea if you have consulted other Dr's or why treatments are not an option for you but I found this...
Googlev9 Pulmonary Fibrosis | Lung Institute

Maybe it is another option for you to look into?
In either case I would consult with more than just one Dr.

I was surprised that smoking was not even listed as a cause on the one Mayo clinic link.
 

Bootiewootsy

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Right after I quit smoking I had many bouts of hypertension. I have asthma and smoked for over 30 years. My dr. was glad I started vapping and said the hyperventalation was caused by smoking and quiting the cigarettes. The cilla hairs have to grow back as the smoke killed them. It may take several months or years for the lungs to completely heal themselves.
I am sorry for your health condition. Hopefully one on the Drs. will find you help, but I seriously doubt that the vapping caused it. I was on a forum for smokers that quit and many of them were having the hyperventaltion problem and were getting discouraged. After listening to several that quit, it will ease in time. I have been vaping for a little over a year now and only have the problem very seldom. It is going away.. I am allergic to many things and also use a nebulizer with albutrol every day. So I certainly feel for you, but I am sure your Dr. recommended doing the deep breathing exercise every day.. Good luck to you.
 
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Siouxinpa

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Have a friend who died of this, non smoker. He contracted it, he believed, from rummaging around old ruins in Oman. There are many possible causes of this disease and his Dr said some people are just more susceptible to it than the rest of the population.

I wish you the best as you deal with this disease.
 

edyle

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@pennysmalls Yeah, around the same time I started having joint pain in my right leg and the fingers in my left hand. My pulm said that fibrosis causes joint pain which blew my mind how something in your lungs could cause joint issues. The complexity of the human body is crazy.

I've got a few questions I hope you would take the time to answer:

1: do you also have any other major conditions such as:
diabetes, heart related issues, asthma, allergies?

2: had you been vaping high vg juices?

3: what wattage did you used to vape at?

4: have you worked in any industry that exposes you to strong chemical fumes such as janitorial, or fertilizer/insecticide industries.

5: did any of your doctors not have any opinion about your vaping with respect to your condition ?

(6: and this might sound far out there but, do you sleep in a basement?)
 

gwapes6

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@edyle
1. No other health issues other than high blood pressure
2. I've vaped 100% VG, 50/50, all sorts of flavors and brands
3. I vaped at all wattages/voltages, I spent the longest time on a KangerTech subtank + at 25 watts on a flavorless 50/50 juice
4. I've only every worked as a software developer
5. My pulm had a very strong opinion, he actually yelled at me (he's indian) and said "You stop that right now!"
6. No.
 

gwapes6

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I can see where this thread is going. I'd really like to see the mods lock this post because I didn't intend this to scare anyone. The facts are out there and that's all I wanted. I'm 28 years old and contracted a lung disease that is rarer than winning the lottery and it started after I began vaping. Could be a coincidence or could have a connection. It's up to you to make up your mind. I just wish I could go back and stay smoke free. It sucks when something like this happens and I have noone to blame but myself.
 
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crxess

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I'm one, at 61 and was in seriously bad health that looks at Vaping as a positive direction from smoking. Obviously it has improved my personal health.
That said, not everything is for everyone.
I am sincerely sorry to hear of your condition and hope things are done to make life as comfortable as possible for you.

A Friend of mine, a gentle Giant was at times over 400lbs. He as also well over 7ft. He suffered breathing problems from his early Twenties and never smoked/vaped. Sadly he passed before reaching 45yrs.

Genetic makeup has an underlying control over all of us and no single answer is right for everyone.
You may have been effected by the change to your lung function while vaping or it could have been hearing there all along. Unfortunately the road is usually long gone by the time arrival is recognized.

Keeping you in my thoughts,
Dal
 
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Bunnykiller

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I can see where this thread is going. I'd really like to see the mods lock this post because I didn't intend this to scare anyone. The facts are out there and that's all I wanted. I'm 28 years old and contracted a lung disease that is rarer than winning the lottery and it started after I began vaping. Could be a coincidence or could have a connection. It's up to you to make up your mind. I just wish I could go back and stay smoke free. It sucks when something like this happens and I have noone to blame but myself.

have you considered the possibility that it could be genetically driven and not causative... that it would still have occured even if you didnt smoke/vape? My younger sister has severe asthma, has always had it... and now has COPD. She asked her Dr. if smoking played a a part in the developement of the COPD... the answer was no...
 
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Racehorse

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I don't have any medical advice for you because like everyone else here, I am not a doctor. I just wanted to say that I am very sorry that you are experiencing this and that you are suffering. :( Every day there are new discoveries in science, and with genome mapping, etc. I believe that all medicine will eventually be a thing of turning on and turning off certain genes, which we can now see in cases of inflammatory response to certain foods, etc. I really hope that there is some biotechnology on the horizon for you and people like you.


@pennysmalls Those connective tissue and autoimmune diseases are tricky, and certainly certain ones like Sjogren's syndrome would not be served by vaping, since people with sjogren's are already fighting vast dehydration issues to mucus membranes all over their bodies and organs. Ditto, people with Raynauds who already have pretty serious vaso constrictor problems in extremities and may find vaping 0% nic is their best bet.

As a result I am not one who throws out testimonials by *individuals* (because we are all individuals with very specific metabolic needs) who may not be served by vaping......and I am not, and never have been at all *threatened* by their testimonies, nor do I think sharing them should be discouraged, as anyone who is suffering sometimes needs and is served by sharing otherwise they become very socially isolated. This is something that the internet has helped. I am more interested in extending compassion to people, whether they were smokers or vapers or people working with asbestos....or even NONE of those things, who are grappling with debilitating lung diseases. There really is no "agenda" that is more important than extending empathy toward people who are suffering and hurting. In these cases I have never had any problem putting politics, theories, etc. aside because, in the scheme of things, i.e. in the "heart's value" it doesn't really matter.


Tracing the disease process in people is not easy and is not black-and-white........and in many aspects, can NEVER be proven beyond shadow of a doubt or that it was A or B that finally was the straw that broke the camel's back.

To the OP: 7 years of smoking is really not that long but we also know (or will soon know) that many people have genetic markers (some are yet to be discovered) that pre-dispose certain people to getting illnesses that may not affect other individuals at all!

At any rate, there is nobody on this forum who is in a position to say what caused your illness, they are all laypersons anyway and only have theories to offer, and not sure at this stage of the game that your pulmonologist is in any better position as there are no long term studies on IPF and vaping that I am aware of.

So, gwapes6, it is very possible that, for whatever reason (and again, it may not even be smoking, vaping, or even being overweight) that your lungs were ailing and that even taking in a small amount of vapor from an ecig was "too much" for them and would explain your early discomfort from vaping that you experienced because you were already unable to expel air from your lungs properly.

Saying anything and everything here, in words, does nothing to help you though, except that I am truly sorry for your condition and diagnosis at such an early age and I pray that you will receive a lung transplant and/or that more and better treatments will appear that will help you!

I would also certainly get 2nd and 3rd opinions from other pulmonologists as well as immunologist/allergist/rheumatologist to see what may or may not be inter-working here.
 

gwapes6

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@Bunnykiller Could be could not be. Anyone who gets a disease is genetically suceptible. It's just a matter of at what point do you come into contact with the environmental trigger. I really believe that vaping triggered IPF in me but didn't necessarily cause it. I was most likely genetically predisposed to it. btw unless your sister had a genetic test that came back positive for the biomarker for COPD, her smoking most certainly is a factor to her COPD as well as the asthma.
 
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Amraann

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I can see where this thread is going. I'd really like to see the mods lock this post because I didn't intend this to scare anyone. The facts are out there and that's all I wanted. I'm 28 years old and contracted a lung disease that is rarer than winning the lottery and it started after I began vaping. Could be a coincidence or could have a connection. It's up to you to make up your mind. I just wish I could go back and stay smoke free. It sucks when something like this happens and I have noone to blame but myself.

I do not think that you scared anybody.
I think that you came and shared your story and many of us had some suggstions for you. I undertand that you maybe did not want such suggestions and simply wanted to inform.

IMO neither vaping or smoking caused your disease so do not blame yourself.
LIke I mentioned earlier smoking is not even listed as a cause.
If either were the cause then I think that by now there would be a very large rise of the disease in people who smoked and/or vaped. Rather than it still being so very rare.

I wish you all of the best.
 
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