An Honest survey

[JennifersHope]

No lectures from the peanut gallery.. PLEASE..... I am just wondering how often you miss a treatment, daily, weekly, monthly, ? If you are most likely to skip a treatment, what treatment do you skip etc?

I already know that you shouldn't skip treatments, how bad it is, how shameful etc, but I am having one heck of a time doing my treatments lately... I know I can't be the only one

. I got as far as putting my vest on today, but I couldn't bring myself to turn it on....I got a holy heck lecture from my primary doctor two days ago, I know what he is saying makes sense, I have to go back to see him next week and report back to him... UGGG...

Even one day last week, I was out on a "date" and I did't take any enzymes because I didn't want him to know I needed them ... I did pay dearly for that and won't do that again....

I am guessing this is my last attempt to deny I need my treatments... I don't know, I don't really notice a huge difference doing them or not....

 

[NoExcuses]

For many healthy CFers like yourself, it takes getting really sick to get them on board the meds train. I know several who have been in your situation - and once they got sick, got permanent lung damange that they couldnt' recover back, they finally started to do their meds.

Even as recently as 2 years ago I would skip pulmozyme. I think i went like a whole 3 months without doing it. I saw no effect whether I did it or not.

Then boom! Hemoptasis. Doc said that I wasn't clearing the mucus out and the bacteria was eating away at my airways down to the blood vessels below.

CF can snowball awful fast, and mine was starting to about 2 years ago. It scared me straight to realize that even though I was a healthy CFer, things could get ugly fast.

 

[littledebbie]

You know I would like to answer honestly but this is the kind of
thing I feel that if I answer it, I'm just setting myself up for
criticism.  so let me be vague and say no I don't do
Everything the way it's prescribed.  I tend to view what the
Dr.'s say as more of "recommendations" than laws.  I
think this is a long way from being an exact science...a
long....long way.

 

[sue35]

I agree with Amy that it takes getting really sick before many people understand to do their meds. That was how it was for me.

But I also admit I still miss nebulizers all the time. I am so much better about it but i go through phases where i just don't do them. I completely understand the vest issue..I have done that with my nebs<img src="i/expressions/face-icon-small-smile.gif" border="0"> I will fill them up and plug them in and then just not do them.

And to be completely honest, I feel like ***** right now and know that I need to do my nebs and still will not, saying in my head that I will really start doing them tomorrow.

People miss nebulizers all the time, yeah we know its bad but it happens. I feel guilty everytime but sometimes it is just too much. Just don't beat yourself up about it, everyone here can understand.

Oh yeah, and TOTALLY have skipped meds when on a date..I know that I pay dearly for it, but it beats having a conversation as to why I take medicine<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[chantelfox]

I agree with Amy as well. I am pretty religious about doing my
breathing treatments and vest, because I HATE feeling tightness in
my chest. BUT I HATE TOBI!! OH man, that stuff kills me. It's like
torture to have to do it. I really suck at doing it faithfully. I
am supposed to do the 28 days on/off thing, but I usually do it
every month and a half or so (if that). For about a year I did
it just when I got sick so it was like every 3-4 months. When I do
it (and this is bad) it would take so dang long that I would pour
half of it out when I got sick of sitting there or just skip
sessions completely.<br>
<br>
My doc really let me have it last month when I saw him. I have
never been real faithful about doing it, but I had become even
less. I made the mistake of answering <i>truthfully</i> to my doc.
Boy did he let me have it AND the RT at the clinic wanted me to up
my vest sessions to 30 min. I wanted to tell them to go to !@#$. I
was so  angry, because I wanted to tell them, especially the
RT, that she should try having to be faithful about doing it 20 min
twice a day for her whole life. See how she felt having to commit a
YEAR of her life (yeah.. I did the math to  figure out
approximately how long I have sat there doing therapies for the 24
years I have been on this planet and it came out to more than one
year) to doing therapies and then come talk to me about adding
another 10 min on each session!..Oh man... sorry it's easy for them
to say. We have lives too.<br>
<br>
Heh, as for the enzymes. What are they? lol. I pretty much stopped
taking them about 5 years ago (eventhough I have taking them my
whole life). I just started taking maybe 1-2 pills a day last
January after 5 years being off them. I used to take 5 with every
meal, but it was a different kind of enzyme I went from Pancrease,
to MT-16, to PancreaCarb. I hate them and NEVER remembered to take
them, so finally I just quit. My weight has been pretty stable
though. I fluctuate between 100- 105 and am 5'3". So I don't
know what the big deal about them is, and my stomach rarely bothers
me. I don't eat a lot of fat, so if I do eat a lot, then I will
take one. So, I dunno. Is that bad?? Heh, I have often wondered if
not taking them can affect my health, like damage my liver or
pancreas or something.

 

[littledebbie]

On second thought....here it is ...I probably do about 40% of what
I'm supposed to on any given day.  Between treatments vitamins
meals etc.  Yep it varies what gets done and what doesn't but
it's probably 40% and I can assure you I do about 1/2 my
nebs/clearance.<br>
<img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><br>
Editing to add: I do not skip enzymes....can't...yikes!
 Although occasionally I do forget but man I never just
neglect to take them.

 

[sue35]

I once was asked by my doctor to participate in a study that tested the enzymes and he said that there is a small percentage that do not need enzymes even if their mutations dictate that their pancreas is involved. He said that I could be part of this group and that if I particpated in the study then they could find out.

I didn't do it though because I know I need them. I get horrible stomach aches if I don't have them. And it involved every week getting a poop sample. Ewwwww!!!!!

Yeah, I agree with Debbie, I would say I do an average of 40% of everything all together. I do most of my important medicines but then the others kind of get lost in the shuffle. And TOBI? haha yeah...should do that one some day

 

[chantelfox]

Interesting....<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[coltsfan715]

Lately I have been pretty diligent about my meds. I have taken my enzymes every meal (or the past 3 months - before that I would frequently forget). I have been doing my aerosols twice a day - except pulmozyme which is only once. I take zithro 3 times a week. I do not do my advair as I am supposed to. I have a hard time with my blood sugars when I take it - that and I forget half the time. I take my insulins all the time as well.

I have gotten to the point that I feel a difference when I do not take these things - meaning neb treatments, CPT, enzymes of course and insulin. If it is a med that I do not notice a difference with or without I am more likely to skip it.

Before my change at my last hospitalization. I rarely took my zithro. The every other day thing set me up for failure it was to irregular for me. I never took my advair and rarely took my enzymes. The rest I have been doing pretty regularly because it helps me greatly to do them. I do agree with Amy that sometimes it takes us getting really sick to scare us into compliance with meds.

Lindsey

 

[cdale613]

Yeah - I'll spare you the lecture, but I don't miss treatments.

Chris

26 w/CF

 

[MCPappy]

I use my vest everyday, twice a day (but i feel aweful and cant basically doing anything without having a huge coughing fit without it) but during that grace period after IVs when my lungs are really clear it is hard to sit down and do it becuase you dont feel like you need it.

If i do miss a treatment it is most likely the one before i go to bed because I feel much clearer in my lungs after the whole day of moving around.

I find that i have to make my self get into the habbit of taking all of my meds and everything before i can get used to taking them, but once i get a system going I am ok. But it always seems to be harder when i break my system (going on vacation or weekends) is when i slip up on getting things done.

Your not the only one though =) If everyone was perfect all the times with our meds... we would still be sick sometimes so dont get down on yourself.

good luck =)

 

[charl72]

Speaking on behalf of my daughter, we try to never miss her
treatments.  We have good days and bad days.  I
understand exactly what you're saying though, it would be really
easy just to miss doing them.  We just try to do them all the
time.  Hard work, I know, but needs to be done to keep as
healthy as possible.  Some days, she just doesn't want to do
them though.

 

[Allisa35]

Well, I guess I'm pretty good about doing my nebs & medicines. I usually take 2 albuterol treatments a day (one when I get up and one before I go to bed), except on Saturday & Sunday. I just do one on those days. I consider those days my "break" days. I also do Pulmozyme once a day. I pretty much have to have an albuterol treatment before I go to bed; otherwise, I lay there coughing & coughing & coughing. My doc put me on TOBI in March doing the 28 days on/off. I did it for about 3 weeks in April and haven't done it since. The side effects scare me. Not to mention the taste; that stuff about gags me. I'm not real good about using my vest, but I do use my hand-held percussor. I usually use it when I do my Pulmozyme treatment at night before bed. The doc keeps urging me to use the vest, but I feel the percussor works better for me. I tend to feel more congested after I use the vest.

As for the enzymes, I pretty much have to take them or I'll regret it later. I've never really had a problem with taking them. The only time I felt uncomfortable taking them was when I was in public (when I was younger). But that feeling has past since I've gotten older. Now I'm just like, "who cares what they think."

 

[katyf13]

Maybe Debbie will agree to this, it seems when your pfts are in the high teens to low 20s the treatments don't make you feel a whole lot better. In fact chest pt always makes Mike exhausted and since he's been starting saline, chest pt makes him throw up sometimes. (so we stopped doing them so close together) He still tries to do everything as much as possible and I bug him about it all the time. But I understand that occasionally, he feels awful and treatments will make him feel worse before it gets better. I can honestly say, most days he does everything he is supposed to do. So if occasionally he feels really crappy, I dopn't bug him as much.

As for enzymes, I assumed everyone had to take 12 after every meal like Mike!! If he forgets them, it hurts! On our first date at a restaurant, he went into the bathroom, popped the enzymes in his mouth, came back to the table and took a swig of his water. I didn't notice a thing. By our second date he took them in front of me ;-)

 

[Lilith]

I'm religious about taking everything every day when it comes to my
pills.  Breathing treatments, though, are another matter.
 Sometimes I go for weeks without doing them...  Although
when I feel congested enough, it usually kicks my butt in gear and
I get on a good habit of doing them every day at least once.
 After I start to feel better, though, I'll start skipping
again.  I know, I'm a horrible patient...

 

[EnergyGal]

I always did my therapies and breathing treatments took meds and all. BUT, I always had this nagging feeling that I was not doing enough and exercise was either full speed ahead or I would miss a session here and there. I was always hard on myself. I am glad I was or else I would not have made it as far as I did.

 

[JazzysMom]

You want honesty? Here it goes & I am welcome to all comments because I am in a defensive mood LOL! As a rule I am very compliant with nebs & vest & have been since my scare last year. Now this isnt the first scare that should have kicked my butt into compliance, but it was the first scare that wasnt of "normal" problems for me. I slack on my vest a lot as of late, but I cant do that as much with my nebs. My airway restrictions is more of a problem then congestion the last few years so my nebs are missed quickly. During the summer months it has been very hard to even be compliant & I will admit that I have skipped treatments all together in the last few weeks & there have also been days that I just do nightime. Even during the hot/humid weather. Yes it weighs on my mind that I should be doing them more faithfully, but I justify it by saying that as a rule I do & if I can cheat without being crucified by friends, family & medical staff then screw them. Some people say that we are literally killing ourselves by skipping any meds/treatments. I guess in some ways we are, but I also feel that "living" is more than the physical aspect of life. I do believe that the discipline needs to be instilled in the younger CFers so they dont have the challenges of altering their life to include this maintenance. Will it guarantee complete compliance=No, but it will help. Now as far as enzymes. For my teens years I was able to not use them without the cramping/diahrea on a regular basis, but I no longer can do that. I cant have that "instant get me to the bathroom" moments anymore so I am dedicated to my enzyme & seizure meds. I do slack on the vitamin departments, but not my oral antibiotics. To wrap things up....Jenn you are not a lone & tho we both know its not the best thing to skip. Sometimes we need to just do what we need to do! SORRY FOR THE LONG POST!

 

[kybert]

im religous with the treatments that work on me, i do them without fail, but im not with the ones that dont work or which make make worse. for example, the only time i do physio is when im extremely productive, otherwise nothing comes up, my lungs get VERY tight and i get dizzy and tired. same goes with hypertonic. if im not productive my chest tightens to the point that i feel very uncomfortable, even if i load myself up with ventolin. antibiotic nebs just dont work for me and once again, my chest tightens. so i rarely do those things. for the rest of my treatments skipping them is not an option. they work, i need them, if i dont do/take them i feel it.

the whole non compliance thing is a tricky subject. the words get thrown around WAY too much. non compliance to me is purposely making yourself, ignoring the fact that you have cf or regularly skipping treatments that work really well on that particular person. i dont feel that someone should be labelled non compliant if they dont do treatments that dont work, make them worse or have some genuine circumstances that prevent them from doing them. different treatments work for different people and others need to realise that.

 

[LouLou]

I'm 100% compliant. Saturday night I got wasted. I've been with my husband for 10 years. He said this is only the 3rd time he's seen me like this... and carried on to reminisce / snicker about the last two times. We got home at 2 in the morning (I'm usually in bed by 11:30 on weekends) and did my albuterol, vest and TOBI (between bouts of passing out (hubby woke me up) and then ultimately vomitting)...sure takes the fun out of getting sloppy drunk - I think I'll probably never get that out of control again...sad to say but it's just not worth it. I'm getting to be the same way about cigarette smoke. I'll get up and leave a restaurant if the smoking is too near.

 

[LouLou]

Kylie, So what do you do day in day out if you aren't doing pt or antibiotics? I used to think the way you do then my doctor did a test where we tracked my scores while I did my method, then we tracked my score when I religiously did the routine he wanted. I've never turned back. He told me what it likely was was that when I'd start something new my body wasn't used to I'd get caught up in the little things that annoyed me, once I was on the routine for a while the positives way outweighed the negatives. It's been 5+ years and my pfts scores have declined well below the national average of 2%/year.