An Honest survey

Scarlett81

New member
It's true it takes a good personal scare to get you thinking, but also for me, it took hearing about other cfers losing their battle or getting really sick. I know that's hard to hear, but for me that was a big motivator.
Having said that, I don't think its a good idea to keep exposing yourself to stories about cfers going through that. For me it was just too depressing after a certain point. That's just my opinion-some people can handle that, some can't. But like I said-initially, it helped me whip my butt into shape so much.
I guess everyone's different.
 

catboogie

New member
honestly, i probably miss one or two of my night time treatments every week. i never skip my morning ones. the reason is fairly stright forward. either i've had a few beer and get unmotivated or dehydrated and don't feel congested or i've been super duper exercising and feel really clear.

if i miss pills it is always because i forget, which doesn't happen often, and not that i choose not to.

now if you had asked how often i check my blood sugar...THAT would be a different story! generally it is only when i suspect that i am high or on the edge of being low. doesn't make for a very accurate "picture" of my sugars.

laura
 

kybert

New member
i prefer to do exercise and take oral meds instead. much more beneficial for me. my doctor has tracked me closely when i have done things like pulmozyme and antibiotic nebs and he agrees that they dont do anything. in fact, i have noticed that my pfts go down on them. the clinic physiotherapist agrees with me that physio doesnt help me unless im productive. both her and the doctor actually recommended that i just have a generous dose of ventolin and lie on a tilt for a while, which seems to help alot more than huffing and puffing and getting whacked for nothing. i can remember the days where i was made to do active cycle for over 40 minutes. physios couldnt understand why nothing would come up despite me being very ill. so instead of leaving it, they would make me do more and more. by the end of the session i would be blacking out, extremely tired and still nothing had come up.

i know my body very well and i wouldnt go saying these things if i didnt have a clue. im quite happy to try new things but i refuse to waste my time on treatments that never have and never will work on me.
 

wanderlost

New member
well, I don't do too many meds - inhalers , enzymes and now I got on the hypertonic saline train. I rarely miss my inhalers, almost NEVER my enzymes (and I am great at taking them covertly, so even when i went on dates I never missed them without the explanation as to what they were), but the HS is another story. I have never had a nebulizer or nebbed meds until I started on the hs...I would say I haven't used the thing in over a month. I find that if I am very congested or sick, it makes me feel a lot better, but for an average day it actually irritates me into coughing more than I'd like to (I know the point is to cough and clear out, but this is a different, irritated airway cough rather than a productive cough).

I have realized that if and when the time comes that I need to start nebbing other meds, I am really going to have to kick into gear with the discipline.
Also, I keep saying that I am going to start running - and i never do. I would so much prefer to have an exercise plan going than to have to go to the vest, but time constraints and laziness and baby number 3 might in fact make the vest be the next treatment that I need to start maintaining.
 

Diane

New member
I dont miss treatments too often and almost never miss my enzymes. I only take one with each meal, and if anyone sees me take it, they know i am diabetic and just assume thats what its for. I never did any treatments when i was younger, because i was healthy and figured when i am older and need them i will do them. Well..... i'm older and i need them so i am doing them. It wasnt easy to get into a routine, and isnt always easy to stay compliant. Sometimes i may miss a pulmozyme treatment or maybe a vest session, but i try to never miss it more than once here and there. My former Doctor once said, if we would do absolutely everything prescribed, we would have no life outside of cf.
 

wallflower

New member
I do find myself skipping stuff. I try to stay on schedule with my nebs and vest, because when I did do them 2x a day without skipping, I saw a huge increase in my pft score.

I do stray a little. Morning is the worst for me. Most times I skip the vest, but do try to do the nebs. I always think that I'll make up for the vest by doing it longer in the evening, but that never seems to work out. In fact, I've had my vest all hooked up and running and forget to put my foot on the pedal, so the increased vest time winds up being make up time for the second one!

I do take my pills everyday, although I am terrible with my enzymes! Most of the time, I just don't think of them - which is stupid, but it happens. I don't use med cups, but I'll put my meds that I take before coming home from work in my pocket. I don't always remember to take them at the right time, but eventually, I'll put my hand in the pocket and go - WHOOPS! I do this on the weekend as well, because I'm so used to checking my pockets to see that I've taken my meds.

Enzymes in public are not fun, I agree. I have a pretty good technique down though, and my boyfriend likes to try and catch me taking them when we're out. I'll take them out of my pocket and hold them in my hand (keep in mind I only take 3) and just hold them until people are either looking away or not paying attention, and then I quick pop them in my mouth. If there are too many people, I'll excuse myself to the bathroom just before I think our food is ready and take them in there. If people ask, I tell them I wanted to wash my hands.

I agree skipping is bad, but it happens. When I get really bad about doing something, I tell my boyfriend to call and harass me to make sure I get it done. Not doing it for myself is one thing, but disappointing him is the worst!
 

Emily65Roses

New member
Hey... What if your lectures are from the cashew gallery? Hmm?? I prefer cashews to peanuts anyday. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> I'm an idiot. Moving on...

As for skipping treatments... Pulmozyme I rarely ever skip. Once a month absolutely max, probably closer to a few times a year. This is mostly because I always immediately notice the next morning, if I've skipped the Pulmo. I feel congested and awful. I skip the saline every now and then because it really wears me out. I do not often have the energy for it. And when I do actually do my saline, I VERY rarely do the <b>whole</b> dose.

The only times I skip enzymes anymore are when I've left them at home, and I'm somewhere else (but even then, I keep a bottle in my purse). This is of course, because yes, you pay DEARLY for that, way not worth it. You know me, take the enzymes in front of the guy, who gives a d*mn? If you really need to hide it for your own mental well-being, take your purse to the bathroom and swallow them there. He won't know you're not just changing a tampon or something tasty like that.

You do need to try and do your treatments, but you know that. As for your doctor lecturing you, I'd really tell him to eff off. There's the thing, it's not like you're stupid enough to think not doing them will have NO effect. You know enough. So as an adult (good god, you're 30-something), if you choose to skip it for whatever reason, you're allowed that decision. If your doc tries lecturing you for it, you can always give him the "Well then you try it... for your whole life. Oh no, you're healthy? Okay, then shut up." I understand he's looking after you, and has a responsibility to try to talk you into doing your meds. So one or two lectures are okay. But after that, if you still skip a few at your own discretion, then he should shut up and deal with it. He is not in a position to lecture. The only people that really are.... are us. And generally, we won't. Hah! That should tell you something.

If you would like to get into that habit, make vest and neb time a certain time when you do something specific you like. For instance, tell yourself the ONLY time you can go on the forum and/or chat at night is during and after you've done your vest/nebs. If you haven't done your meds, you can't come on the forum. Don't know how well that tactic will work, but that type of thing is worth a try.
 

bmombtoo

New member
"I am guessing this is my last attempt to deny I need my
treatments.."<br>
<br>
<br>
Jenn,<br>
Since this is your last attempt to deny you need them you realize
you need them. THAT IS HALF THE BATTLE in taking care of yourself.
I know with my asthma I use to skip meds so people wouldn't know
and than suffer for it. Now I don't care if they see me take them
or not.<br>
<br>
Hang in there..........and just curious did you decide to tell
him.? Ok , maybe I'm nosey.
 

thefrogprincess

New member
I admit that I am terrible about doing my HTS like I should. I usually manage to get one treatment in per day but two treaments are very hard for me. I don't work a regular schedule so sometimes I just cannot sit it in.
 

point

New member
Thanks for posting this.  I've read every response so far
today while I was at work.  All of your responses hinge on a
balance of living and maintaining.  I also have bros. with CF.
 My one bros. is regularly taking TOBI and Pulmozyme.  It
is oddly comforting to read your words.  They remind me that
my brother is doing the best job he can with what we were dealt
with.  He does regularly take his treatments, but he does miss
at times.  Reading all of this reminds me that life is a
balance for all of us.  Keep your fight.
 

NoExcuses

New member
Some food for thought......

Dr. Beall, the head of the CFF often speaks about CF drug development. One of the most common questions he gets is when will new drugs come to the market?

Dr. Beall states that if CF people would just use the meds that we already have, patients would live so much longer.

People are so concerned with new meds coming to the market to make them live longer, but they won't even use the meds that are available now.

I think that's very ironic.
 

littledebbie

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i> Some food for
thought...... Dr. Beall, the head of the CFF often speaks about CF
drug development. One of the most common questions he gets is when
will new drugs come to the market? Dr. Beall states that if CF
people would just use the meds that we already have, patients would
live so much longer. People are so concerned with new meds coming
to the market to make them live longer, but they won't even use the
meds that are available now. I think that's very ironic.</end quote></div><br>
<br>
Does Dr. Beal have CF?  Hmmm doubtful.  I think he should
eat a shut up pie.  <br>
<br>
I'm with Kylie on this- non-compliance is thrown around way too
much.  Being honest with your Dr. and not doing that which
does not help you should not be filed under
"non-compliance".  You and your Dr.  should
both be working towards a program that you can actually stick to
and that affords you the best health care.  It should not
be about your Dr. giving you a laundry list and you blindly
trying to do it all and then beating yourself up when you fail to
do it all.  I think it's about trial and error open
communication with your dr. until you find the best thing for you.
 

Dustin82

New member
I have been keeping up with this post and I dont agree with Dr Beall that is the dumbest thing I have heard yet. I know I am not waiting for a med to just make my CF go away. Having CF is a full time job by it self. I dont think some doctors know that I mean after awhile u have to make a choice do I want to set in the house all day and do treatments or do i want to live life and skip a treatment here or there. I know that sounds bad but that is how I think about it.

For me I get in atleast one breathing treatment a day more if it raining or something and I am not working. Enyzme I always take them no matter what I have a bottle of them in my truck so they are always with me. My inslulin I take it no matter what because I am sure all of u that take inslulin knows how bad u feel if ur sugars are to high or low. I dont test my blood sugar as much as I should just for the fact I can feel when it is to high or to low
Dustin
Missouri
24 male CFRD
 

JennifersHope

New member
I just got home from work. I worked a double today so I am beat.. BUt I am really excited to read all these posts tomorrow,,,,

Thanks so much for responding to the post.. I
am so tired but I will read them tomorrow,

Night
 

Scottius

New member
I agree with some of the others: if you are FULLY compliant, you really don't have time for anything else, and might even lose some precious sleep as a result. Like Dustin, I usually do the one breathing treatment a day (two if it's a Tobi month) and rarely do the morning treatments unless feeling worse. Like Kylie, I don't do Pulmozyme because I see no improvement while on it...but cleared this one with my doc first. I have always taken my enzymes religiously...probably because there is such an immediate consequence of not taking them. However, getting myself to take breathing treatments took longer. I didn't show any pulmonary symptoms until I was almost 18 so it was not something that was automatic, like taking the enzymes. Having to sit myself down and "waste time" doing them, just as I was supposed to be on the verge of more freedom, was a real bummer. I barely did them through college, and probably suffered some long-term damage as a result.</P>
 

JennifersHope

New member
THanks so much for your replies....I really appreciate the honesty so much. I am glad to know that I am not alone. I agree with what so many of you said about needing to find a balance between having a life and doing every med like you are instructed to.

Emily you made me laugh as usual. Your insight to things and you maturity in handeling hting is amazing to me.. I think you would be very good in a career of dealing with the people in some way,.... Maybe being a therapist.....Can I hire you now???? I don't know what it is about you, I don't know what exactly it is about you that makes me admire you and your way of putting things so much.

My primary doctor really is a good guy, he is very sympathetic, he always tells me I don't know what it is like to be you, I have been blessed with good health but I do know YOU NEED TO DO YOUR TREATMENTS. All I can say back to him is You try it for one month, just one month and then talk to me... You get up at 4 30 am just to do your treatments, you decide an hour more of sleep or strapping your jackhammer on your back.... anyway... no wonder he says I give him chest pain. I do love him, but like he said he is clueless what it is like.... that is why I turned to you guys.. the experts..

I have to report back to him this Friday.. I know I am going to get grilled, but I am not going to lie...
Debbie your shut up pie is the best line I have heard in a while and I am for sure going to hijack it and use it...

Some of you I was so surprised to read your post that you skipped or missed treatments, I had you pegged for never missing a treatment and though I know it isn't good to do, I was delighted to see such honesty...

I think I may print this post and bring it to my doctor read...


I just want to say again and again and again and again how grateful I am for each one of you and your responses to the post. I know it is much easier sometimes to just read a thread and not reply... That is why each of you are so valuable.

Love,

Jennifer who is going to start doing treatments regularly soon.
 

irishgirl

New member
You doc sounds like a pretty cool guy. Mine says pretty much the same thing. I love to bargain with him. I will do my am treatments but, like you I am up at 4:30 for work and all. So, I do my treatments while I am walking on the treadmill (I bargained for exercise instead of the vest or cpt. He gave me a trial run and if my numbers went up then I could stick to exercise. Well, my numbers went up, so I won that one.)

I however work more than one job, so I don't come home until about 8 pm. I never ever do night treaments. And, I know this is retarded but it is mainly because of my nebulizer. I use the pari trek and the noise is covered up by the treadmill in the am. But, I can not stand the noise and the fact that everyone in the house knows what I am doing, plus the fact that it takes like 30 minutes. So, we bargained. I can not afford the e-flow, so I bought an Omron ultrasonic neb. I love it. It is perfectly silent, and super fast. Now I do my nighttime treaments. And yes, I know it is not approved by the cff. So I may miss something, but if it weren't for the omron, I wouldn't be doing anything at all at night. So, my doc agreed to that one too as long as my numbers went up. Now if they ever get the e-flow to around $100, then I will buy it, but I refuse/can't spend $1,800 on it right now.

Since I am trying to get pregnant, I am being more diligent than ever with my meds. But, like everybody said, it is all pretty much a balancing act.... I am trying to do the best I can do, and not have it interfere with my life--or as little interference as possible.
 

JennifersHope

New member
Can you tell me more about the eflow? I am really curious about it.... I am assuming from your post that it makes the nebs go faster..

Thanks for your post...

Jennifer
 

MommyWithCF

New member
I know EXACTLY what your going through! I have what the doctors call a chronic case of CF and I have progressively been getting bad about doing my treatments on a daily basis. I got so bad that I would only do my treatments when I felt really congested and even then I didn't do my vest, and would end up in the hospital a couple weeks after being sick because of it. About a month ago, I got a lecture from my doctor, probably the same one you got, and it actually got me thinking.... "I don't have a time limit on my life yet, and my lung functions are still good (70s) right now, so why should I let it get to that point?" "I have a daughter to live for, a career I'm trying to pursue" "How am I going to do all those things in the future and enjoy my daughter growing up if I have to be on a respirator or even carry around an oxygen tank?" But it is hard and I've been fighting this habit of not doing my meds for years..... Like you, I know I need to do it, but I just can't stand the thought of having to be tied down to machines 2 to 3 times a day, or sometimes for me, I just don't have the time....I'm getting better though, Right now, I've started making a point to do them once a day at least! You just have to have the will to do them, then make it a habit, or have someone who will encourage you. What's sad is some people don't realize they need to take care of themselves until it's too late!
 

irishgirl

New member
I was going to be in a study where they required you to use the e-flow ( I don't think it is approved either) I had to back out of the study for various reasons, but not before they told me all about it. It sounds wonderful. I think she said that pulmozyme took 3 minutes, albueterol 5-6 minutes, and hs like 4-5 minutes. It is fast and silent. I know there are several people with one, and I called to order one a couple of weeks ago, and that's when they told me the price. Yikes!! Well, I needed a new neb anyway. So I researched and shopped around. And, I bought an Omron. I can at least use it until I save up for an e-flow. It is basically the same concpet. It is a battery powered ultrasonic neb. The medicine goes through a vibrating mesh thingy that converts it all to one uniform particle size. The smaller sizes allow for depper penetration into the lower lobes of the lungs, and it uses all of the medication in the cup. It is fast (around e-flow speed), and silent. (Okay, well I pretty much wrote down the brochure <img src="i/expressions/face-icon-small-smile.gif" border="0">

I really do like it. I can do all of my meds. in the time that it usually takes me to do one. It is kinda of funny. I use it sometimes in the morning, and I have it in the bathtub with me. I wash my hair and rinse it out, and by that time one med is done. Then I put in another one and I cream rinse my hair. Rinse and another med is done. I put in another one and shave/get clean, and I am all done by the time I get out of the tub. Talk about multitasking!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> But, since you are up at 4:30 too, I know you understand where I am coming from. It's way too early to be thinking about meds, much less be doing them!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Anyway, I love it. It keeps me compliant which keeps me healthy. My clinic raved and raved about the e-flow. So hopefully someone that actually has one can answer this more accurately. I am just going on what my docs told me...
 
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