i'm gonna suffer in years too come!!

[billiewoolley]

Anyone else not ever take their medications!?

I never do. I rarely take my creon when i eat (I dont have bad tummy aches after my food much at all - thank god), I only ever take my antibiotics when I'm ill, and even then I probably only do 2/3 days of treatment out of a 2 week course, rarely do my physio or nebiliser (I just believe walking places everyday help more effectively like too the shops, visit family, etc) my physio barely works for me - i do the acapella, I can rarely bring mucus up, like ever! I always just end up swallowing what bit of mucus does come up, I rarely take my vitamins neither liver tablets (can never pronounce the name - urso-bhytgdfg!!) I only ever really do any treatments when I'm ill and thats not often really. My lung functions have always been good - last one was 105% and I cant understand how they are like these when other CF's I know how such low lung functions but I suppose I should consider myself lucky aye.

I know in the long run, not doing all these things properly are going too hit me, and I'll have wished I took them all at a younger age.. But I'm 18 now, still young and just wanna feel normal. I've done treatments all my life, been hospital appointments every 6 weeks of my whole life (as I was diagnosed with CF at 3 months old) and I'm just fed up quite frantically.

 

[SoyaSauce]

Dude,- even though your lung function is good and you feel ok, You still have CF- You not doing your treatments is FOOLISH and DANGEROUS, it not cool, and it NOT keeping in control of CF.

You need to start treatments, like TODAY like by little, don't wait before its too late. CF is no joke, and you will pay eventually, it will hit you,-But, I use to be in the same boat as you are, I sent you a PM, maybe we could talk. Also, check out http://runsickboyrun.blogspot.com/ He has been very inspirational to me.

 

[Twistofchaos]

Yeah, most of us go through a rebelling against CF fase one way or the other.

Especially around your age where you stop being a kid and certain realities are starting to hit home.

So did I, and payed heavily for it.

So when I read a post like yours I can only think: IDIOT.

But like the rest of us you probably have to find this out for yourself.

 

[baco623]

I was basically you when I was 18. I didn't do my treatments, didn't take my pills,. didn't watch my sugar (I have CFRD), didn't do what my doctors told me to do. The way I looked at it was "I feel fine, I don't need to do that, I will be fine" Unfortunately I couldn't have been more wrong. When I moved out of my parents house and off to college I started to very slowly getting sick. 19 years old was the first time I had to be hospitalize multiple times in a year. I had numerous picklines and had to do lots of antibiotics and I lost a lot of weight, and from there things went down hill quickly. By 22 I was on oxygen 24/7, weighed maybe 100 pounds, had to get the GI tube put back in and developed horrible arthritis in all my joints. By 23 I had to withdrawl from college, spend 16 hours a day tube feeding, spent almost my entire day and night in bed trying to sleep and was coughing up cups of blood every single day. I was placed on the transplant list in November of 2009 and eventually gotten a double lung transplant on September 3, 2010. And I have to tell you the transplant experience while it did save my life and give me a second chance was the hardest, most painful, most trying experience of my entire life, and I've been through a lot. I wouldn't wish the kind of pain and suffering I experienced on my worst anyone. I literally was days away from dying. All of this happened because I didn't do my medications or take care of myself. You don't want to have to go through any of that. I know it sounds super cheesy to say but you need to love yourself enough to take care of yourself. Trust me your PFT's once they go down they start going down going VERY fast and it is painful and frustrating. One of the worst parts about it is the guilt I feel for doing that to myself. DON'T DO THAT TO YOURSELF!!! I completely completely understand how you feel. CF is F*d up, doing treatments and taking pills and going to the doctor all the time is realling F*ing unfair, but trust me if you don't do your meds, it will only get worse. Please Please PM me so we can talk, I don't want you to go through what I've gone through. Sending lots of love!!!

 

[beautifulsoul]

You're digging your own grave. I could go on and on about how stupid it is not doing anything but I won't. SoyaSauce mentioned a great blog/story to follow if you're looking for that type of support. Unfortunately, a lot of Cfers eventually figure things out for themselves like TwistofChaos already said. I can understand it's completely overwhelming and even depressing. You just want to be normal but you have to learn to accept things the way they are. Keep your head up.

 

[kmhbeauty]

I am one too that also doesn't do meds. I am 27 years old, ddf508. It is really hard when you are dx later in life and you feel healthy to start on a bunch of meds. I am almost 5'8 in height and 150 lbs. I don't see a need for enzymes esp since vitamin levels are really good. Lung function is around 80-83% also. I feel like I would benefit the most by exercising and doing my vest. Next mission! I believe there is a time and place for meds but at the same time you need to feel out your body. When the doctor told me to take tobi a long time ago, I felt like something was wrong. I have only even cultured staph, never anything else. I tried the tobi once and I coughed a huge amount of blood up. It freaked me out and I was done with that. If you don't want to do your meds, exercise and do your vest. Another thing that has helped me a lot is fresh fruits and veggies. I have a nutribullet, I take all different fruits and veggies, add some flax seed, raw ginger. I consume one to two a day. In a year and three months, I have had only one small cold that I got rid of on my own.

 

[running4life]

This was me exactly. I am now 26 with lung function at 80-85% and still struggle to do my treatments. I have gotten much better over the past year, but that's because at 24, I was hospitalized for the first time. I lost 20 pounds, was out of work for 3 weeks, and forced to do all my treatments. Take care of yourself now while you are healthy and ahead of the game. 30-60 minutes a day of treatments NOW is much better than hours and hours each day later struggling to get your function up.

 

[AmalynRose]

Remember that the reason you are healthy now is because you had 18 years of good habits. Your lung function will decrease if you don't take care of your body. I hear of people DYING from CF related complications, ranging from not being able to get a new pair of lungs in time to just getting sick. Not taking care of yourself when your parents worked so hard to keep you alive and healthy for 18 years is a shitty way to repay them. Don't make your mother loose her son at a young age. There is nothing harder for a parent then to see their child suffer. If you wont do it for you, do it for the people who love you.

 

[welshwitch]

I don't know, I kind of see it differently. When you're young, you rebel. That's life. Some kids do it by doing hard drugs, partying, not sleeping. And then....it's kids with CF. I know when I was in my teens and early 20's I totally blew off my meds. It's because I could get away with it. I was young. My friends were dropping acid, I was skipping a breathing treatment. I went to Costa Rica my junior year of college. My doc wanted me to bring my nebulizer machine. Did I bring it? Of course not. My lung function was 120%. I was fine.

I'm 33 now. How's my lung function? More like 109%. Okay. Time to step it up. Like many other adults, we get our "high" from exercise and other extreme sports. Need to feel alive? Sign up for a half marathon. The feeling of running for 13.1 miles without stopping is incredible.

Like everyone else, my lifestyle has changed. Now instead of going out to bars until 2 am, it is much more palleatable to curl up with my boyfriend, watch some SVU, drink a glass of wine and go to bed at 11 (yes, even on weekends I laugh when I see my friends who are obsessed with food and what they are eating, etc. etc. Healthy is in. Abusing your body is out. It's called growing up.

Perhaps I have a different perspective because I didn't really start to notice I had a lung disease until my late 20's/early 30's, (I seem to have a milder form of CF) but it's worked for me. I enjoyed the years when I could be young and free and not feel bogged down by some nebulous terminal illness that I was told I had. I'm not advocating to abuse your body, but you know what is right. You will be OK. Just do everything in moderation. Like many people here have said, it's up to you. It's your body. You get to choose. And you can choose what to do on your terms.

 

[kmhbeauty]

I don't know, I kind of see it differently. When you're young, you rebel. That's life. Some kids do it by doing hard drugs, partying, not sleeping. And then....it's kids with CF. I know when I was in my teens and early 20's I totally blew off my meds. It's because I could get away with it. I was young. My friends were dropping acid, I was skipping a breathing treatment. I went to Costa Rica my junior year of college. My doc wanted me to bring my nebulizer machine. Did I bring it? Of course not. My lung function was 120%. I was fine.

I'm 33 now. How's my lung function? More like 109%. Okay. Time to step it up. Like many other adults, we get our "high" from exercise and other extreme sports. Need to feel alive? Sign up for a half marathon. The feeling of running for 13.1 miles without stopping is incredible.

Like everyone else, my lifestyle has changed. Now instead of going out to bars until 2 am, it is much more palleatable to curl up with my boyfriend, watch some SVU, drink a glass of wine and go to bed at 11 (yes, even on weekends I laugh when I see my friends who are obsessed with food and what they are eating, etc. etc. Healthy is in. Abusing your body is out. It's called growing up.

Perhaps I have a different perspective because I didn't really start to notice I had a lung disease until my late 20's/early 30's, (I seem to have a milder form of CF) but it's worked for me. I enjoyed the years when I could be young and free and not feel bogged down by some nebulous terminal illness that I was told I had. I'm not advocating to abuse your body, but you know what is right. You will be OK. Just do everything in moderation. Like many people here have said, it's up to you. It's your body. You get to choose. And you can choose what to do on your terms.

I totally agree with you, well said! I also think running and exercising is better then any treatment, any day. Taking care of your body doesn't mean you have to load up on meds, you can just take care of your body. Eat healthy, drink lots of water, get lots of sleep, ect. I have a different perspective because I grew up with no meds and nothing wrong with me. When someone is conditioned into the medical life at a young age, all they know are these meds, its doctors orders, I must follow these. Taking meds for 18 years and then stopping might not be the best choice because your body gets dependent on them. For me, Ive never taken them, so my body doesn't really need them. I am functioning with out them. When I go to the cf clinic, my doctor just pushes exercising to me mostly.

 

[Twistofchaos]

I totally agree with you, well said!

No, not well said at all.

You have a 100% lungfunction at 33 without having to do jack for it? Good for you, let's encourage this kid not to take any as well and spin the Russian roulette to see if this one is as lucky.
You can't just go by lungfunction at 18 years old. Mine was pretty good at 18 too infact.
At 100% it doesn't take many infections or whatever it is that sets in a downright spiral, and a few years later you're at 40%.

I also think running and exercising is better then any treatment, any day. Taking care of your body doesn't mean you have to load up on meds, you can just take care of your body.
....
When someone is conditioned into the medical life at a young age, all they know are these meds, its doctors orders, I must follow these. Taking meds for 18 years and then stopping might not be the best choice because your body gets dependent on them.

Sorry, I did not mean to be rude but did you hear those thumps. My face just rammed itself into my desk multiple times as hard as it could.

Let me ask you. Here it comes right.

Why do you think people with CF back in the day almost without exception used to die so very young??
It wasn't because they were "conditioned to medical life"..
There wasn't any.

One good infection, boom gone. Still is like that for a lot of us.

 

[billiewoolley]

Welshwitch, I couldn't agree with you more. Like you, I also believe I have a milder form of CF, as my lung functions have always been good, and i've only been hospitilised 6 times my whole life! I totally agree with you alot to be honest..

I don't know, I kind of see it differently. When you're young, you rebel. That's life. Some kids do it by doing hard drugs, partying, not sleeping. And then....it's kids with CF. I know when I was in my teens and early 20's I totally blew off my meds. It's because I could get away with it. I was young. My friends were dropping acid, I was skipping a breathing treatment. I went to Costa Rica my junior year of college. My doc wanted me to bring my nebulizer machine. Did I bring it? Of course not. My lung function was 120%. I was fine.

I'm 33 now. How's my lung function? More like 109%. Okay. Time to step it up. Like many other adults, we get our "high" from exercise and other extreme sports. Need to feel alive? Sign up for a half marathon. The feeling of running for 13.1 miles without stopping is incredible.

Like everyone else, my lifestyle has changed. Now instead of going out to bars until 2 am, it is much more palleatable to curl up with my boyfriend, watch some SVU, drink a glass of wine and go to bed at 11 (yes, even on weekends I laugh when I see my friends who are obsessed with food and what they are eating, etc. etc. Healthy is in. Abusing your body is out. It's called growing up.

Perhaps I have a different perspective because I didn't really start to notice I had a lung disease until my late 20's/early 30's, (I seem to have a milder form of CF) but it's worked for me. I enjoyed the years when I could be young and free and not feel bogged down by some nebulous terminal illness that I was told I had. I'm not advocating to abuse your body, but you know what is right. You will be OK. Just do everything in moderation. Like many people here have said, it's up to you. It's your body. You get to choose. And you can choose what to do on your terms.

 

[beautifulsoul]

This post makes me wonder why individuals with CF are suddenly getting sick in their 20's and 30's.....Maybe because their not doing anything to help themselves...

No offense to anyone whom does most things they need to be doing. Unfortunately, it goes both ways. It's not very fair. Don't do anything. keep living. Do treatments, still get sicker and sicker.

 

[welshwitch]

I do everything I need to be doing now. Breathing treatments, meds, docs, everything. Even logging into this website as often as I do means I care. Would I have engaged in my health to this degree at 21? No way. That was my experience. My journey.

You may disagree with me. I don't mind. Everyone is different. Everyone's disease is different. People will only take care of themselves when they are ready. CF is a spectrum, and luck plays a huge part in it. I'm not giving anyone advice. Just explaining how I see it, based on my experience. Which I think I've done a good job at.

 

[SoyaSauce]

I just want to point these facts out and a study I read about, As there seems to be some mis-information and myths going around.

Your body DOES NOT become "depended " on general CF run-of-the-mill meds, pulmozyme antibiotics, inhalers, vitamins ,and PT, vest, YES- you probably feel bad when miss one- two- of your treatments,- well, that's because you use to opening you airways up removing the mucus!

Your body can not magically heal itself obviously from CF damage,and I HIGHLY disagree with the above comments about 'about taking care of yourself in general without the need of meds', that's dangerous thinking with in CF.

PFT's testing is a variable prediction set, it set based on trends of the general population around the country, for age, weight, and gender, ( if in the United States ) . It is meant to serve as graph and represent an over all trend of your CF health as a picture and where it is going, Drs. can't go inside you lungs every visit and 'look' to see hidden damage. So they use this PFT as a guide rule and try to play "fortune teller', you can say

Let's say there is a trend of 112% - %108 - %105 in period of a few months, now this might not seem like a big deal and seems everything is going good 'enough', but that still a 3-7% drop somewhere, it means something is going on, and with a very slow-slow sustained damage, you as the patient will not feel anything, because in general, lungs function very well with in the %100 range.

Now, This was a study done at a CF center that I read about, They took a patient with a %116 in PFT test and they the patient didn't do treatments on the daily routine, VERSES another patient with a lung function of % 75 baseline who does their treatments diligently. When they took a closer look by a having CT scans and Chest X Rays routinely, It was a freaky eye opener, the person with highest lung function of %116 had MORE BRONCHIAL damage going on, INSIDE the lungs SILENTLY , MUCUS plugs, even though they had a %116 lung function,! Their mucus bacterial levels were significantly very high, THAN the person with a weaker %75 lung function! How is that?!

Well, turns out the person with %75, of course did have damage bronical airways obviously , but they were not as blocked by thick mucus, the bacterial counts were much lower then their counter part, and the body was able to 'compensate' in way, the airways were flabby but 'clear' , the blood flow not as good, but they are still able to work in "stagnated way", that the scientists, Drs. were not quite able to understand.

So in other words, TREATMENTS SLOW deterioration down DRAMATICALLY, resulting in much better quality of life, and LIVING LONGER .The patient despite having a lower PFT was STRONGER then the one ignoring everything and having a HIGH PFT !

So this message is CLEAR to other CFer's , PFT'S are not the WHOLE PICTURE, it just another TOOL. Its what going INSIDE that counts and how the body is reacting to the damage being done.

One theory is perhaps if the damage is so "SLOW' when treatments are adhered to, so the body in its own way can 'repair' or, "compensated" it, rather then it being FAST full blown damage..

Trying to get rid of that bacterial count, removing the mucus, keeping the airways FREE of bacteria as much as possible, is they key.

 

[kmhbeauty]

"You have a 100% lung function at 33 without having to do jack for it? Good for you, let's encourage this kid not to take any as well and spin the Russian roulette to see if this one is as lucky. " To respond to this, I am not the person with 100% lung function, I was the one in the 80s. The person who has 100% sound like she does strenuous exercise to keep her lung function high. The point of her post was not to give up his treatments entirely but everyone goes through this stage and its normal going through your 18-20s. " Why do you think people with CF back in the day almost without exception used to die so very young??
It wasn't because they were "conditioned to medical life"..
There wasn't any. "
Basically, what I was saying that in present day, it is hard for someone who was dx at birth and grew up with this disease to understand the logic of someone who was dx later in life. I believe I think different then someone who was dx at birth. It took me a long time to understand cystic fibrosis. It was an overnight mind grasp. I got dx because I had polyps, not lung problems. Everyone has a different opinion and guess what?!! You all are entitled to it, but this is my opinion. This is how I see things, understand what Im saying? My cystic fibrosis doctor tells me to exercise and do hyp saline, that's it, theres not much more he can tell me to do because Ive only ever cultured staph. As far as ramming your face into a desk, have some class in your wording, we are adults. Respect! Soyasauce, I see what you are saying but I don't see things that way when I look at myself. I have not done nebulized treatments, and I have only ever cultured staph. I also have ddf508 which from what I know isn't the standard mild form of cf. I don't think luck is the reason why I alive and almost live normal life. I have to be doing something right, for now, that might change, but for now, Im doing well.

 

[beautifulsoul]

. I also have ddf508 which from what I know isn't the standard mild form of cf. I don't think luck is the reason why I alive and almost live normal life. I have to be doing something right, for now, that might change, but for now, Im doing well.

what do you mean isn't the standard mild form? To my knowledge, deltaF508 is the most common mutation in People with CF. Although, I'm not 100% sure that the CF condition will become worse if you have two copies which makes it ddf508. I think each persons current CF condition can differ because it has further more to do with genetics within the family. Not just the mutations themselves.

 

[SoyaSauce]

kmhbeauty -

"My cystic fibrosis doctor tells me to exercise and do hyp saline, that's it, theres not much more he can tell me to do because Ive only ever cultured staph."

I also culture Staph bacteria, never PA so far, but my lungs are running at %76-%80 on a good day with daily hard work.

Double DF508 combination , is actually the more severe form of CF, Having 1 delta copy is the most common form of CF with another mutation, and next double delta combos.

There is a huge difference in what 'you think' is right yourself, then what the Dr WANTS or RECOMMENDS to you. Drs have immensely studied CF, scientists have studied and looked at statistics, with weighing the negs, with the positives.

If what you are DOING is ALRIGHT and AGREED with the DR, then that's the treatment plan that works for you, but you SHOULD not 'be your' own doctor, and tell him what you think or IGNORE, or CHANGE things without discussing it thoroughly,- If your doing that with your CF doctor, then IMH your Doc/Patient relation is broke.

 

[Melissa75]

SoyaSauce, Thanks for that info and study explanation. I find stuff like that interesting. Anything that contradicts what someone would expect makes me feel less odd.
My pfts were well above normal when I was dx with bronchiectasis approx 115-120%. In the years that I've taken to get aggressive with mucus clearance and exercise, I have been sick less often but my PFTs still dropped about 20% points over 4-5 years. My endurance for everything (exercise, travel, stress) is better. So, all I can figure my cardio vascular system is now more efficient and without my hard work, I'd probably be down more.

Another thing I've thought about is that people who pre-damage are/were/would've been at 80% (the lower part of the bell curve of "normal")--those people are not loaded with as much damage when they drop to say 65%. In contrast, people whose normal is/was/would've been on the 120% part of the curve. Well, by the time they are pinging 65%, almost half of their lung function has been damaged/lost. I have no idea what that would mean in terms of bacterial load, or effort to oxygenate the blood, or propensity for bleeds, collapses, plugs, or any other variables. I just know it can't be meaningless either.

To the OP, I wish you the best in getting control of your future. You can do this. You want to feel good physically and emotionally, and regrets or guilt are not good for either. So, you try to do less things you know you'll regret and also try not to dwell on the past. Move forward in a way you are proud of.

 

[SoyaSauce]

This post got completely away from the original person, who posted why they don't do their treatments, instead of giving support and tips on how incorporate compliance.

Gosh, CFers and doing treatments VS. those who don't, is like an Evolution- Creation Fox NEWS debate here !

********Bangs head on desk with twistofchaos WHILE doing a neb and vest..... *****