i'm gonna suffer in years too come!!

[azdesertrat]

You only have one body.
Even though I hate mine, I still try to take care of it. Many times, I fail miserably. Evidentally, I must have done something right, I'm almost 49 & still alive.
I was lucky I guess. Other than violent stomach problems all my life, CF didn't really manifest itself in me til my early-mid 30's.
At 39, almost 40, I started going downhill, horrible & rapid. That was in spite of doing all my nebulizer treatments, forgot to mention, I had to start doing Pulmozyme & Albuterol via SVN when I was around 33.
I was able to work full-time up until 7 months pre-trans. I was still working 1 month prior to trans, but sporadically. When I did work, it was extremely hard to do it.
Post-trans, I'm medically retired & try to take good care of myself. I want to see at least 10 more years. The only way I'm gonna do that, and enjoy it, is if I take care of this God-forsaken chunk of flesh I'm stuck in.
Its not fun, but in order to have any quality of life when you get older, I would strongly suggest you take care of the equipment you've been issued. (your body.)
Best of luck to you, I hope this little story helps you.

 

[welshwitch]

Yes! We were never telling him not to do his treatments. Do your treatments! Bah.

 

[kmhbeauty]

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.

I was also told by my doctor that it is the most common but not normally a mild mutation. There are other mutations that tend to be more on the mild side. Not totally sure on this, just want was said to me when I first got dx at children's hospital.

 

[kmhbeauty]

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.

If you have also only ever cultured staph, do you take any other meds besides hyp saline, enzymes, the basics? Yes my doctor said to focus on hyp saline, vest, and exercise, enzymes, vitamins. The basics.... We are the ones with cf though and we have to listen to our body. One time my doctor prescribed an antibiotic for an extended period of time. I believe it was to get rid of the staph, this was about 3-4 years ago. The antibiotic gave me a really bad ulcer in my stomach that I suffered for many months with pain. The antibiotic didn't get rid of the staph from what I remember and after that, I had some trouble with illnesses. I was having trouble recovering for colds and flus and I was getting them more then normal. Before this I never really got sick, not a lot of colds either. Something just didn't feel right and I really didn't enjoy the ulcer that I was in constant pain. They may tell you to do something but sometimes those meds don't work well with your body. That happens to me a lot. We can debate all day about what we think is right for our own bodies. That is what I find funny and that people like to have an opinion on what they think is best for me, or what they think is best for the forum poster. If you love apples and I love oranges, I am happy that you love apples, more power to you. For some reason because I love oranges, its wrong. No dude, people live their life they way they want to. Im happy with you living your life how ever you want, and I am not going to say what you are doing is wrong. If you like, good for you! I speak from my own personal experience, that's it.

 

[Twistofchaos]

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

Haha yes complete with: "That science, facts and math of yours well that's like, just your opinion man."

 

[RytheStunner]

I was also told by my doctor that it is the most common but not normally a mild mutation. There are other mutations that tend to be more on the mild side. Not totally sure on this, just want was said to me when I first got dx at children's hospital.

The idea that certain mutations by themselves are "more severe" or worse than others is mostly a myth.

 

[kmhbeauty]

The idea that certain mutations by themselves are "more severe" or worse than others is mostly a myth.

I have no idea , that is just what I was told by two cf doctors, children's and adult in southern California.

 

[baseballfrank]

KMHBEAUTY, You have to be very careful with the advice you give people with CF especially somebody who is 18 years old and just starting to figure things out as an adult. Everybody is different. It sounds like you are fairly healthy. You are very very lucky. Being healthy is not because you choose to do alternative meds and choose not to do your meds. It is because you are lucky and you take care of yourself. The keys to being healthy with CF are 1. Taking the meds and doing the treatments that CF Doctors prescribe. They know a lot more then you based on years of research and practical experience. 2. Take care of yourself. Eat right and exercise. If you do these 2 things, you will increase your chances of living longer and having few problems. The opinion you are sharing that you don't need meds is DANGEROUS and IRRESPONSIBLE! Like I said you are lucky you are reaching your 30's and have had very few problems. The natural remedies you continue to support can be beneficial but they are not the reason you are healthy. I have read many posts from you and the message you send is the same. "I am healthy, I do alternative treatments, therefore I am healthy because I do alternative treatments." NOT TRUE! This might not work for everybody and it has very little to do with your good health! BillieWooley, you need to start acting like an adult. Do what the doctors tell you. Explain to them your concerns and apprehensions about doing what they suggest. They may adjust your regimen based on your health and your age. It is important that you try to live as normal a life as you can and still do your treatments. It is balancing act we all go through.

 

[kmhbeauty]

KMHBEAUTY, You have to be very careful with the advice you give people with CF especially somebody who is 18 years old and just starting to figure things out as an adult. Everybody is different. It sounds like you are fairly healthy. You are very very lucky. Being healthy is not because you choose to do alternative meds and choose not to do your meds. It is because you are lucky and you take care of yourself. The keys to being healthy with CF are 1. Taking the meds and doing the treatments that CF Doctors prescribe. They know a lot more then you based on years of research and practical experience. 2. Take care of yourself. Eat right and exercise. If you do these 2 things, you will increase your chances of living longer and having few problems. The opinion you are sharing that you don't need meds is DANGEROUS and IRRESPONSIBLE! Like I said you are lucky you are reaching your 30's and have had very few problems. The natural remedies you continue to support can be beneficial but they are not the reason you are healthy. I have read many posts from you and the message you send is the same. "I am healthy, I do alternative treatments, therefore I am healthy because I do alternative treatments." NOT TRUE! This might not work for everybody and it has very little to do with your good health! BillieWooley, you need to start acting like an adult. Do what the doctors tell you. Explain to them your concerns and apprehensions about doing what they suggest. They may adjust your regimen based on your health and your age. It is important that you try to live as normal a life as you can and still do your treatments. It is balancing act we all go through.

I want to say first off, thank you for having an opinion towards what I said but talking to me in a respectful manner. Appreciate it! I never gave him advice though. I just said basically I am similar to you since he asked if anyone does the same. I said if you choose not to do your treatments at least do other things to keep your body healthy ( lots of sleep, exercise, eat right ) I see what you are saying that I put a positive light on a non med life, my goal is not to discourage someone to take their treatments but to just say " hey Im different, and its ok to be different, I have noticed meds don't work for me, something always goes wrong, so I choose to treat my body with health in a different way" Everyone should do their treatments, especially if they have been doing them a long time. I don't think that its smart to stop ( I stated that before too). Regardless if he does his treatments, I was saying that he might benefit from exercising and eating healthy. You can do that along with treatments. I think I don't efficiently communicate well on these boards. Either people are reading my words wrong, jumping to conclusions, the second someone says "non treatment life" or I just cant communicate well in words about this stuff. I try to be as clear as possible but it still end up back firing. Its sad because it makes me feel like some are closed minded, too opinionated, and want to argue. I have the same disease! Im not different! I have had 9 nasal surgery for polyps, and very lard kidney stone ( 2 surgeries to remove). Im still affected but in a different way. Im getting to the point where this website doesn't do me any good. Its just causing a small amount of drama. I figured everyones story helps, even if it is a different story, to understand cf, but Im starting to see that's not true, mine just pisses people off lol. sad but true lol

 

[baseballfrank]

I'm glad you restated your position. I think you are getting knee jerk reactions from people because they are reading what you are saying and perhaps not what you are meaning to say. I try to be respectful. I have seen some nasty replies back to you. I would say don't stop using the forums, but just try and communicate a little better. When I first read your reply to billywooley, I felt anger. I didn't react and send you a note. I waited a few days and then re read what you said. Communicating thru posts is difficult and is different then face to face interaction. We all can only share from our own experiences but we all have to realize that everybody is different. One thing is an absolute given with this terrible disease is you HAVE to take care of yourself!!! Exercise is extremely important as is proper nutrition. By the way. I was diagnosed at birth, but didn't start having problems until I was 35. that is when I started doing breathing treatments. Up until then I was so healthy, doctors never even suggested I should do them. Now I do 4 treatments a day! Everybody is different.

 

[scarecrow]

There is a big difference between rebelling against authority and trying to get to know your own body. Especially w/ CF each case is so different that if you don't take charge of your own life and do some research on your own you won't last long. But the typical acting out that most all of us have done in our teens or 20's is not going to do you any good. Maybe the best you can hope for is that you survive it without doing too much damage.
The best advice I can give is that you need to take responsibility for yourself. If you ruin your life it won't be anybody elses fault. I don't know if they still do it but when I was 7 years old the Dr. told my parents that I would probably not live to be a teenager. Once I made it out of High School I was determined to "live fast and die young". For about 12 years I burned the candle at both ends. It was a wild ride but it didn't kill me.
Since then I have tried to take charge of my own health and I tend to try more natural remedies than modern medicine.
Each case is so different w/ CF that it is not really possible to give advice without having specific info. Just know that your actions have consequences and it may be years until you know what those consequences are.

 

[JustaCFmom]

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.

I hope you continue to feel well. CF is a sneaky disease and you can feel great while all kinds of distructive things are going on inside. Please talk to your doctors and CF team, that is what they are there for. Be open and straight.

My 21 yr old son is doing great with PFT's around 130%. My kids pancreases work fine so they don't need enzymes. The doctors encourage him with his physical activity and to do the treatments he needs. He just got diagnosed last year due to a sick sister. We don't have vests here and my son doesn't get physiotherapy like his CF siblings. His physio is his running and cycling, etc. and the doctors are OK with this.

I guess what I am trying to say is each case is unique and the doctors know you and your background and circumstances. Talk to them. You are healthy and normal, and want to stay that way! Lots of people have all kinds of health things they need to take care of, it is part of life. CF demands more effort than many conditions, but don't think you are the only one who has health issues. Our blessing is we know a lot about it and there is SO MUCH we can DO today. Information is power. Know as much as you can about CF.

Good luck and this is a great place to vent!

 

[BreathinSteven]

Hi Billie!

It's a goofy world we live in -- maybe our diseases (all of us) are that much different -- if I would have been in your shoes, I would have been in deep stuff rather quickly... But -- if you're getting adequate nutrition and keeping weight on, and your lung function is good -- I'm not 100% sure I would be acting all that much differently than you... Yes -- you may pay for it later -- or you may not... Yes -- being very compliant now, may push off the inevitable, if it is actually inevitable...

One thing that I would strongly consider -- not only for yourself, but the people around you and any other CFers you may come in contact with... The only thing that kinda bothered me about your situation was your mention of not completing your antibiotic course... You could be creating a bigger problem than you know, at some point in the future... Often -- our antibiotics do the bulk of their work relatively quickly... Particularly when we're in the early stages of our disease and do not have excessive lung damage... (i.e. when the antibiotics are actually efficient...) The problem is that, in the first day the antibiotic might whack 50% of the bugs we have... In the second day, another 20%... In the third day, another 15% for a total during the first three days of 85% of the bugs gone. That makes you feel substantially better -- and it's even possible that your immune system may now be able to tackle the remaining 15%...

But, the remaining 15% are also the bugs that the antibiotics couldn't whack in 3 days -- they are probably the stronger, more resiliant and more resistant bugs... And now, those stronger more resiliant/resistant bugs start multiplying... And that's how you start developing drug resistant bacterial infections... And that's asking for bigger trouble in the future...

If you're getting your nutrition without your enzymes, and not experiencing belly problems -- and your lung function is great -- I don't know that I'd be that focused on that either... But, not taking a sufficient course of antibiotics is playing with fire -- and that could be one of the things that could cascade you into real problems... It would probably be better, in the long run, not starting them at all -- than it is to end them before the course is complete... You could be setting yourself up for drug-resistant bacteria issues in the not-too-distant future... Love, Steve

 

[Justinsmama]

I am so sorry for you. I wish you did not have to go through this and, at such a tender age, make decisions to either be "normal" now or live longer and better latter. It is so unfair. I realize everyday that my 8 year old son will too have to find his way through this path. I hope and pray for him but know that the end decissions will be his and his alone to make. I pray that you find that independance in your choice to keep your body healthy. I pray too that it does not take long before there is a cure and you can have your time and your health. My prayers are to you and all of our youth fighting the battle that you never had a choice in.

Justin's Mama

 

[SoyaSauce]

Hi Billie!

The only thing that kinda bothered me about your situation was your mention of not completing your antibiotic course... You could be creating a bigger problem than you know, at some point in the future... Often -- our antibiotics do the bulk of their work relatively quickly..

Steven, great point out and I couldn't agree more, and was actually thinking the same thing, Antibiotics are our forefront fight and honestly they are the real thing that has made leaps in not only other diseases of history but CF dramatically, and to finish them only 2/3 with treatment is IRRESPONSIBLE, to yourself AND OTHERS. If you don't want to take antibiotics, DON'T TAKE THEM-!!!

 

[gunelle]

I think that the OP is a girl, I read the user profile(correct me if I'm wrong). I was diagnosed at 32, so no meds for me up until then. Taking meds have improved my quality of live tremendously. Just would like to say that I think it's better to be safe than sorry, and do your treatments.