Encouraging Tobi

[anonymous]

My b/f has CF and was told to do the nebulizer by his doctor. Now I hate as much as anyone to be told what to do or when do to it but does anyone have any tips to encourage his use of Tobi. He's done it a few times but never for the entire month, I don't think he's even done it for an entire week. He just got diagnosed a year ago so acceptance still is hard and the prescription of new medicines is just a hard reminder of the disease. I love him to death and know that if I were faced wih the same, it would be just as hard but I want him to keep his lungs as healthy as possible for as long as possible. He's doing good now, I just care about him and want what's best for him. Any tips on encouragement without being a nag? Thanks

 

[anonymous]

I had the same problem with my husband. It really helped him for me to discuss my feelings about how when he doesn't use his medications, he neglects his health and that in turn will shorten his life. Of course, it was in gentler terms than that, but that's the general idea. I talk to him about how important it is to me that he is with me as long as possible and that when he knowingly chooses not to use them, it's a slap in the face to me. Even though it's not his intention, his actions tell me that I am not actually important. That really helped him start coming around about not only his medications, but at least talking about apsects of a lung transplant-when that time comes and we aren't there yet. I told him that if he isn't going to do it for himself, he should at least think about those around him who love and care for him. That it's not fair for him to be selfish about his disease because there are those of us who love and care for him, and that he should think not only of himself when he makes those decisions. Maybe sitting down and having a discussion and making it about "you" and "your" feelings and not him, will get you started talking.

Julie
Wife to Mark 24 w/cf

 

[anonymous]

Thanks a lot for your reply. I've tried telling him that the only reason I encourage it is because I care about him. Its just so hard because I don't know what he's going through mentally but I know that I want him to be as healthy as he can be. I guess it is just going to have to be something that we will have to sit down and talk about. Since it is new to him and to myself bringing up CF and treatments for it is still kind of touchy. Guess it is just something we'll have to work out. Thanks for your advice though, its always nice to read your input on the site. Best of luck to you and your husband.

 

[anonymous]

If you ever want to talk, off the board please don't hesitate to email me at division902@hotmail.com. I know there are a lot of questions intially-actually always that come about and although everyone on this board is helpful, I have found that sometimes I don't want to post things for everyone to read, that I want to talk to just one individual person. I check my email a few times a day, and for another week I work 12 hour night shifts so I do all of my responding at night.
The first few times I tried to talk to him in depth about ANYTHING relating to his CF, he got mad and closed up and I left crying. It took a few attempts before we were able to communicate productively. dont give up if the first few attempts produce nothing. And even now, after 5 years of being together and dealing with this together, some things are still a touchy subject-and understandably so. But what really got through to him was me telling him that I take it personally when he neglects his meds and treatment and in turn neglects his health. He didn't use to take his Ultrase (enzyme) and after about a year of being with him I conviced him to try it again, I had to arrange the Rx fill with the doctor and pick it up for him and set it in front of him and tell him I would like him to try it for a few weeks and then he can decide if he want to continue with it or stop. after some complaining on his part, he did try it and has been on them ever since.
Sometimes you have to hold their hands through the beginning of new treatments, medications...and no offense to men out there but they seem to be a little less compliant with treatment routines and meds and such. when he was first Rx tobi nebulizer he refused to use it. We had many-a-discussion about it and how stubborn and selfish it was of him. I kind of made it fun for him by saying, if you do your treatment as prescribed today, I'll make you your fav dinner, or do something special in the bedroom... I know it sounds sort of pathetic, but that's how it all got started and now he does it without me even reminding him. And our dog loves the nebulizer (strange animal I know) so it gave him and the dog more time to cuddle because the dog lays by him-nearly on top of him whenever he uses it. and I did have to "nag" on a few occasions, and he let me know that he felt I was nagging. And I told him that honestly, I didn't care because I was more concerned with his health than what he thought of me at that moment.

Best of luck and if you ever want to talk, don't hesitate to email me

Julie

 

[anonymous]

i wont let my g.f take tobi, i dotn like wut it does to her

 

[miesl]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>i wont let my g.f take tobi, i dotn like wut it does to her<hr></blockquote>
You won't <i>LET</i> her take Tobi? Exactly who are you that you think you know more than the doctors that precribed it to keep her healthy. It shows your complete lack of respect for your girlfriend that you put what you want ahead of her health.

In addition to adjusting your attitude about your girlfriend's health and treatment - you really need to learn about spelling and grammar.

 

[anonymous]

ditto the last poster. Untimately unless she is allergic to it, it will benefit her in the long run even though there are short term side effects. And yah, who are you to tell her what she can and can't do. Sounds like she'd be much better off with someone who will push and support her to do what she needs to get done, not who buys into her crap when it gets difficult and tells her what she can and can't do. I don't mean in any way to make this a personal attack but think long and hard about what you are doing. My husband doesn't like it either because it makes him cough and light headed for a while afterwards. But his infection is now gone and he is back to his normal self.

Just as I posted to the initial person who wrote this post, sometimes you have to remind people not to be selfish with their health and treatments. Well, you need to make sure you aren't being selfish in the same manner, different situation.

Julie

 

[anonymous]

What does it do to her that would allow you to make such a decision for her like that? How do she allow you to make a decision to possibly shorten HER life? Wow. It makes you wonder about the way people think about love. It's supposed to be a partnership in which you actually benifit from each other's views in a positive way. You support each other. I pray that in the future you don't regret that decision. I wish her well. Eva

 

[anonymous]

To the original post alot of people when their first diagnost go through alot of emotions and unfortunatly we go through ALOT of denial. But it usually passes. I know it must be very difficult to stand by and watch the one you love not feel motivated to do his treatments but in the long run he'll feel so much better and he'll realize that. I think it's good that your learning all you can about CF because your comfortable with his treatment maybe he'll get comfortable with them as well. I agree with Julie all you can do is educate him and talk from your heart and it will sink in. Eva

 

[ClashPunk82]

My boyfriend would never say to me oh I don't want you taking that med first of all if he did I would knock him out and 2nd, he isn't like that. He is always on me about my meds and if I forget to take something he gets upset. One time I didn't want to do a neb and I was mad at him for not leaving me alone and pestering me to do it I fnally said FINE I"LL DO IT. When I came back from gettin my setup to do my med he was crying. He said all I want is for you to do your stuff and stay healthy so I can keep you forever. Then I started to cry and I said that I would be better about doing my meds!! <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF

 

[anonymous]

I agree with Nicole, sometimes it takes a heartfelt conversation-or even a cry. It's hard for (and I speak from my PERSONAL experience, so this might not relate to everyone) CFers (my husband in this case) to sometimes stop and think about the fact that there are those of us that love and care for them and with that in mind, that CF can be just as hard on us as it can on them-just in a different way. I had to make that point to my husband on many occasions. He use to tell me, what do you know, you don't go through what I go trhough, you don't feel the pain...And that is very true. But in the same sense, they don't know what its like to stand by and watch someone they love "neglect" their CF and health. like those of us who are caregivers sometimes have to do. It's a real eye opener for them when you finally let them know you feel that way.

Julie

 

[anonymous]

Personally, I think the "g.f." post may have been a bogus post to get everyone charged up--just my opinion.<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

To the first post:
Lucky him to have you! Something my friends have done for me sometimes is "do my meds with me". If they are over when I need to do them, they sit with me and read or we watch a movie.
If you take part in it, he may not feel that he is missing out on other things so much.
If he's having embarassment issues about doing meds infront of you, be patient but persistant. Be honest and let him know that it makes you happy when he takes care of his health, and that you're in this togeather. Most CFers understand that even though it's hard on us, it's also hell for our loved ones.
Debbie
23 w/ CF

 

[anonymous]

I see where you guys are coming from and I agree that guy is wrong to stop someone from taking meds. I do not take tobi or pulmozyne myself. I refuse to. I have seen to many people become dependant on them and I don't want to be that way. I am not saying I am smarter than the doctors, but I know my body. Tobi in particular always made me feel like I was to hyper couldn't sleep after taking it kind of thing. Say what you want about me I am just saying my opinion. I am 23 and have had cf since birth. I do take all my enzymes and daily servent.

 

[anonymous]

I don't see how you could become dependant on pulmozyme, all it does is help to losen up mucous so that it is easier to clear.

Dave 29 w/cf

 

[anonymous]

of course you've had CF since birth we all have.

Dave 29 w/cf

 

[ClashPunk82]

Ya pulmozyne is just basically to liquify the mucous so you don't have to cough so hard to get it up! You really can't become dependant on it. And tobi is good because it gets down deep to help with infection. I could never not do either of those. It keeps me feeling good and not so tight!

Nicole 22 CF

 

[anonymous]

I don't think we're dependant on them just because they work for us. If they didn't work for us we wouldn't use them. Eva

 

[Emily65Roses]

Right. It's not a matter of dependency. It's more like... "Hey if I skip this med, I'm going to cough harder, have more trouble breathing, and overall feel pretty awful." But that's just a fact of CF, you have to do treatments to make things work better, since they don't work too well naturally. It's not as if we're weak for "depending" on these meds. That's just the way CF works. And hey, people can call me dependent on my Pulmo if they really want to, but it makes my life much more tolerable, so I don't give a damn. Haha.

As far as that short post about "not letting" the boyfriend/girlfriend use Tobi, I agree with he anonymous post 7 posts or so ago. I think it was just some idiotic child trying to see if he could get a rise out of us. In fact, as far as my own personal case... Sometimes if I'm feeling too lazy or tired to get my Pulmo ready, Mike will get it for me, and force me to do it because he knows it's a pain in the ass, but it's better overall if I just get it done. Sometimes he does a better job of keeping me up on my meds than I do. But that's what he's there for, right? <img src="i/expressions/face-icon-small-wink.gif" border="0"> <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

ight first things first u have no rite telling me i dont respect her. i do respect her and thats y i wont let her take it, every time she is on it it makes her get a cold like thing and she is caughing all the time and when she goes back to the doc her numbers go down but when shes off it for the month and goes back to the doc her numbers r high. now u tell me if i shoul;d let her take it?