So I'm 26 somehow.

[panfer]

I say somehow not because the odds were against me.. but because I didn't have the help I should have.

I'm a little upset about it, My lungs aren't in the greatest shape anymore after a recent stay at the hospital and a botched surgery and a completely collapsed lung..

I have to pick up the pace with taking care of myself.. problem is nobody showed me how.

My mom did her best, and somewhere around age 10 I started managing my own care. She was a single mom, and has some behavioral/mental problems of her own that made things turn out this way. She's a hoarder, and right now I'm living with her after having stayed away for a long while. We are trying to get her to tidy up, but it's a very slow process. Meanwhile I am exposed to dust and god knows what else.

My mom doesn't have a clue about what to do, with any task that seems daunting.. my care, her house.. ect. She becomes overwhelmed and shuts down. So at age 10 it was up to me.. I didn't do the greatest of jobs.. I'm getting better at it though.

Right now I needs some advice, maybe even a mentor. I learn best by being shown. I need to be retaught the basics that I have missed. IE: equipment management, like cleaning and storage. Right now, I simply take my treatment and leave it at that until I take my next one. Cleaning and storing the neb has never been something I acknowledged as necessary, I think I may have been mistaken.. I was a kid afterall. So what do I do?

How do I keep up my exercising without being in pain for days afterwards? It's very discouraging and makes it hard to maintain a regular workout schedual.. that's not to say I've not done it.. I have, I was told the aches and pains would eventually fade away and my body would adjust.. It doesn't. Am I working out too hard? Am I doing it wrong?

I'm not on any nebulized antibiotics, Colistine didn't work well for me, and I know I should probably ask about Tobi, or the new one that's come out recently.

I have a superbug, Burkholderia Dolosa, along with 3 or 4 other bugs, but I'm stubborn, and they always lose the fight for my lungs and as far as I'm concerned always will. Though after my most recent stint in the hospital, After all that's happened, The new pains.. the decreased lung functions.. I think it's time for me to pick up the pace and stop fooling around with these adversaries.

Any and all advice is a plus, Even if I already know it, I appreciate it, Even if I've heard it before but never really paid it any mind.. like the cleaning up of my medical equipment.. This time I'm listening, and I want and need all of the details.

 

[StevenDeWilder]

Hi Panfer,I have CF too.I'm 27 and spend at least 4-5 hours a day on my CF therapy. I'm a business owner and I work out (cycling) about 10 hours a week.
I cough up a lot of phlegms so I have to word real hard to breathe comfortablyA lot of sleepless nights... My FEV1 is pretty good.
I'm confident I can give you advice.Can you give me some more information about your specific treatment?
<ul>
<li>What kind of nebulizer do you have, wich products do you use?</li>
<li>Wich exercises do you use for coughing up the phlegms?</li>
</ul>
I will share you my average daily routine.
Get up at 7am.Start nebulising Lysomucil and Atrovent with my <strong>E-flow.</strong>(http://www.paripharma.com/)
After my first aerosol I nebulize again with Pulmosyne.
<em>(never try out products on your own without consulting your doctor)</em>With the E-flow nebulizer (and basicly every other model too) it is very important that you wash it off with water <strong>immediately</strong> after finishing up. Don't let it dry, but wipe it dry with a Kleenex or a clean towel. <strong>(This is very important to minimilize infections)</strong>
When it's clean I put my aerosol away on a clean towel. You can use a Tupperware bowl or whatever you like, as long as you keep it clean and <strong>disinfect every two days.</strong>Disinfect your aerosol too every 2 days, or daily if you're very sick to reduce the chances of self-infection. You can use products like imodium for this.
15 minutes after my aerosols I start my breathing therapy to cough up my phlemgs.This takes at least 2 hours every morning and I have to repeat accordingly to how I feel 3 to 6 times a day. That's a lot of time...
I use a<strong> PEP mask and a Flutter</strong> to support my breathing therapy. (they could be called differently in your country) You can google them if you have never heard of them.
It's normal that you feel chest pains, lower back pains, dizziness, and fatique.For me it depends day to day, but to unpleasent truth it that you'll have to learn to deal with this. Streatching out and doing active sports helps a lot though.I have muscle pains, back pains, etc daily.Sometimes it consumes me, most of the times I can take it...The important thing here is that you'll have to set goals for yourself, big or small so that you have something to look out for when times are hard.
Accomplishing these goals will make up for all the effort you put in to it daily.Right down the things you wan't to accomplish for yourself and set a deadline for it.A month a head, a year a head, five years a head.Fighting a chronic disease without having something to keep going for is extremely hard for anybody.
At this moment my goal is the climb the Col Du Galibier, a famous climb known from the Tour De France. (cycling) You can check out a video I made. This is a teaser from a documentary I'm shooting about this event.http://www.youtube.com/watch?v=OPTuCaQWKbc&feature=plcp
Try to right out a therapy schedule on paper. Every little step you can think of and make a neat list of it.Hang it up somewhere you can see it, like in the kitchen for instance.This will help you clear your mind because everything you need to know and do is already on a piece of paper so you'll not have to worry about it.Feel free to ask me specific advice about anything you'd like to know.Take care!

 

[nocode]

Hello. I'm a 28 year old female (29 next month) and here's what I do on a daily basis: - Nebulize Pulmozyme in the morning - About 30 min later I nebulize Colomycin During the day, I having coughing fits (either provoked or involuntary) that help me cough up mucus. Unlike the previous poster, I don't have a routine of breathing therapies. I cough up the mucus as it comes and I can usually get by this way, although I think that it would be better to do what StevendeWilder does. I guess I'm not as motivated. At night I nebulize Colomycin again and I take 1x Azytromicyn per day (pill - antibiotic). I also inhale Symbicort 2x day and Salbutamol 2x day, 5 min before I nebulize Colomycin to open the airways. I exercise a couple of times a week, but not as much or as consistently as I should. I do yoga 2x a week, which is great for my emotional and physical health. I don't suffer from any pain. I am on night oxygen though because my O2 sat drops to 86% in my sleep. I'd say I spend about 1,5h a day total on my CF care, including meds, exercise and mucus release. Let me know if you have any more questions.

Edit - Ah, you were also asking about cleaning nebs. As opposed to most people on this site, I only wash my neb cups with water after using and that's it. My doctor told me that that's enough because any bacteria that we might catch from our nebs is already in the environment (our home) which we're used to and doesn't really affect us in a negative way.

 

[panfer]

Hi and thanks to both of your posts.

I'm very interested in learning more about the PEP mask...
and if medicaid would let me have an e-flow, that would also be awesome.

I take an albuterol inhaler which I follow up with 7% hypertonic saline solution through my nebulizer, during my saline I do deep breathing exercises as well as breathing out as much as possible through the acapella(similar to the flutter but with a magnet instead of a metal ball and gravity.. so it can be used sideways.) I cough a lot up during this, and try to clear some afterwards, then I take pulmozyne and wait about 15 minutes before doing some more clearing with deep breathing and breathing out as much as possible through the accapella.. for as long as I can tolerate.. it's not comfortable but it beats coughing til i'm blue in the face and not getting anything up.. after that i take flovent and i'm good to go.

I use a pohillips resperonics elite compressor with a Pari LC Plus nebulizer.
I use the accapella for now, I can't tolerate my vest after the surgeries from my last stay in the hospital.
I drink boost plus chocolate, 3 - 5 a day usually.

 

[lilmac7]

I take a whole bunch of supplements now. this is my second month on them and I've noticed a decent improvement in my health. Coming from where I was a few years ago I've been struggling to get back to that stage honestly and I may have just found some motivation and drive again to get back there but the difference in the equation now is hemoptysis which I didn't have back then so it's always in the back of my mind that if I push myself too hard I'll cause one but I haven't had it happen in the gym as yet and don't have it as often as it seems some others get it here.

Anyway back to your situation...I've had a couple times well in the past before I took up weight lifting and was doing very poorly with my health that I had a collapsed lung and was able to bring it back so don't let that make you feel discouraged, though the difference is your surgery which I don't know the details of and whether it's related/cause to the collapse? Which could be an issue. The first thing about improving your health is the want and determination to do so then with that you'll get the drive and not stop. I've literally been down in the dumps and basically in a hospital bed giving up and all the meds just not working and me feeling like this is the ending and it's not till a family member comes and talks some sense into me to reiginite the drive and will to fight, then once my motivation and attitude changes is when I start improving and am able to kick the infection/exacerbation. So be motivated, you can do this!

As for meds routine, I get up in the morning and do my ventolin and atrovent combined to open my airways then I do some draining or vest depending on the time and how junky I am - I work full time so don't have the luxury of time being on my side. and I am now taking Seratide twice daily - just started recently. I do the nebs again through out the day for a total of 4-5 times depending on how I feel. A big part of physio for me is exercising, makes me bring up quite a bit if it's there to be brought up and I do weight lifting. As for pain it's normal and yes will go away after a while but you've got to stick with it and push through even though you are sore. If you stop for it to go away and then start again you'll just get it again. It's caused from lactic acid build up in the muscles. Supplementing with glutamine can help this. It usually takes about 2-3 weeks of a regular exercise routine to get past that soreness stage then it will take considerably more exertion from that point on to get it again and it probably won't be as bad as before. I can get into more detail on this but for this writing it's not necessary as I'm not sure whether you're a guy/girl and your fitness/appearance goals.

I also have Burkholderia Cepacia, I guess is a bit different from your super bug but when I was told I had that I got the impression from the Docs like it was a death sentence - this was years ago in '02 and clearly I haven't quit and refuse to so you can do the same and prove them wrong about it. I honestly think the mind is an amazing thing and if you can get yourself in the right mentality your body can do wonders. So keep your head up and stay motivated and moving towards your goals. We're all here to help and motivate eachother. Any specific questions you might have just ask

 

[panfer]

My surgery, it was a simple port replacement. My lung was nicked.. which is no big and can usually be fixed with oxygen and observation.. They said that the line was in, so I got constant fluids through it while in icu for 3 days straight.. could've been 4.. i was pretty doped up because of the insane amount of pain i was in for my stay there. Every x-ray, every morning showed worse collapse.. until they finally decided to give me a chest tube.. i think the 3rd day in.. bedside.. and it missed it's mark and nobody knew.. the second one did not.. but that was given to me after I was carted to surgery again.. the port being moved and placed on my sternum.. right there near the middle.. i'm scrawny.. this thing is stitched down good to a paper thin muscle.. yeah I'm a little annoyed.. also annoyed that the line isn't protected by my ribcage.. it's sticking in my jugular because they apparently didn't want to try to get the line in properly.. and I wasn't given the option.. I'd honestly rather have a picline every time I go in.. anyway.. once they got that second chest tube in.. it was a big one.. they drained 2.5 liters of fluid from my lung.. iv fluids.. like I said, completely collapsed.. I kept the chest tube for about a week and a half.. just to be safe..

my rib cage has always ached maybe a 2- 4, i complained but my doctor paid no mind.. now, after this surgery i'm stuck on a pain scale of 4-7 depending on my activity level or congestion or frequency of my clearance therapy.. that's while on pain meds, and stuck between 8 - 10 while not.

It's almost 2 months later and these numbers have only changed slightly.. something's wrong.. but while I'm working on getting into pain management I'm also determined not to let those same painmeds be the end of me like I know they can be.

I don't use atrovent because it turns my mucus into a stickier less held together substance.. regular albuterol makes it so I can cough up globs that keep their shape.. not a pleasant image but hey.. I can't use the vest currently because of the placement of the port..

I know the whole lactic acid thing, I have worked through it many times, and I've stuck to it for months the pain never goes away.. It may have something to do with the prior aches I've always had. When I'm not in pain.. I'm a powerhouse.. It's incredible the things I'm capable of without losing my breath, I stop to cough, but I'm set.. I don't pull muscles or over use them.. I recover quickly.. that was after I was free of the chest tube and kept in the hospital for an extra week.. then they yanked the plug on the pain management. I'm starting to think that lone physicians aren't the best way to go.. but I hate the universities where I end up being a class project for a bunch of idiots who come in one after another to ask the same damned question. If the hospital wasn't already a crummy place to be.. redundancy annoys me.

I will be a skateboarder again, It is the best feeling in the world... I remember how it felt even 4 years later.. that's the last time I was actually able to cruise the bowl's sides.. a mindspace I can only describe as peaceful and where cares are cast away..

So, I need to build core strength, and explosive power instead of pure strength.. I dated a personal trainer and had the benifit of some sage advice.

Burkholderia is definately not fun, and the docs have reason to believe it it.. because it's certainly a hell of a lot more phlegm.. but the strong.. or stubborn survive.. and I am a mix of the two so hey..

On the subject of hymoptysis.. i've coughed up blood, i'm pretty sure it was from my throat because it wasn't dark.. it was bright red.. one time It was high up in my throat.. and I was gurgling it when I breathed.. freaked me out and lasted less than five minutes.. I stayed calm and made sure I was getting air to where it needed to go despite sprouting a leak.. What are the risks of having them?

 

[lilmac7]

The first hemoptysis I had was the worst, in the middle of my sleep and I got the gurggling. thought I was dreaming I was drowning or something and woke up coughing, grabbed the trash can, spit and rolled back to go to sleep and the gurggling right away. I was like WTF this ain't normal, coughed and it clicked to me at that point it was like water in my mouth and I could smell/taste the blood so got up and flicked the light on to see and sure enough straight, plure blood! What you describe is the same and I would say it's from your lungs not throat. People get embolisations for them but they can't do that procedure here where I live so it worries me a bit. Luckily never had one as bad as that since then. the day right after that night I went to the beach and the heat brought it on again, I was in the public restroom stall coughing and blood was flying out everywhere - took someserious concentration to calm down and collect myself for it to stop. Seemed like a long time in the moment but I'm sure wasn't that long.

Sorry to hear your experience but I can't help to wonder if that hospital knows what they heck they are doing with you? Maybe there's a better place you can go for things like that?

The pain you mention sounds similar to a pneumothorax which I've had a couple times too. No chest tube was inserted for me and I was told I'll just have to bare it and it will go away eventually. which each time it did go away but took months so if what you have is anything like that then it's quite possible it will go away over time as long as you keep yourself healthy along the way and not get another exasserbation with it. It's basically air trapped in there and you body has to absorb it which takes a while and you probably have a considerable amount trapped in there.

I wish you best of luck, stick with it and stay healthy.

 

[panfer]

Wow, that's a harsh one, i've never another hymoptysis like that a second time.

I'm going to be going to a university listed on the cf website.. The guy I was going to has been my doctor since childhood, but I can't trust his surgeons and he defends them. I don't think there's any reason they shouldn't have been able to catch what was going on sooner.

I've had a pnuemothorax before, i remember the sensation.. like it was sandpaper against sandpaper riddled with nerve endings in both of my lungs deep down at least it felt deep down.. it feels more like bone or muscle pain, my sternum, the joints surrounding it, a couple joints where the chest tube was and below it, and then wrapping around back to a certain spot on my back where my ribs connect to my spine.. my sternum hurts on both sides though and i'm not quite sure why because.. no chest tube on that side, and my port is on the same side(still directly over my sternum) as the chest tube.

 

[azdesertrat]

Hey! What do you need to know? I'll be more than happy to help if I can. Get used to the birthdays Kid, I never thought I'd see it but I turned 48 last May! Things aren't as bad as they seem. You can learn to manage your care. If you want my e-mail address I'll be happy to help in any way I can. You & I have much in common. Stay in touch huh? Smile...

 

[panfer]

I know I seem angry, but I smile when I can. I'm just angry at what happened under the supervision of someone I've trusted for years.

I'm worried about going to this new place, I really don't want to be the subject of the day for a bunch of random students every day. I want a fixed doctor that I can build a bond with because this is my life I'm trusting them with, Ya know?

Last time I went to one of these big hospitals on the cff website, I met a doctor at a clinic.. And then I was handed over to a team. A different doctor was in charge of my care each week, and he had like 5 doctors under him who all had to take their own notes.. So I didn't know if what I was saying to one, would reach the head hancho, and I didn't know which direction my care was going half the time, and then getting in touch with the head hancho was hard to do.

I'm also guessing that it's more than just a school for doctors, because the flabatomist that came to take my blood one night stabbed me in a nerve.. I was in searing pain for a month in the arm and thumb.. and I still have a numbness and tingle in it a year later.. Also, a CNA left a bag of ice on my tray table right next to my phone, and my phone was plugged in and charging, lit up so everyone could see it.. I wake up and it's destroyed.. battery acid everywhere.. I loved that phone and wish I could get the exact same model but ATT stopped stocking them. walkmans and nokia were the best.. you could throw them at a wall and they'd still work.