cf deal breakers

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wallflower

New member
So, do any of you have a deal breaker in your cf care that you would hate to consider having to do? For example, I never wanted to get to the point where I had to do IVs (as in, I would say no and refuse). But now I would. After reading a lot of posts, my new stopping point was I never wanted to have to get a port (but reading your posts, I see that life goes on and it's not a terribly huge deal).

So to rephrase my question, is there a point in your cf care where you would put your foot down and refuse a treatment or procedure that would help you? And has reading forums like this changed your mind?

I'm just curious, cause I have learned so much from this site, and have such a different perspective on cf and myself than I did a couple of months ago. But I know it is still hard to face new things in our personal lives when we haven't experienced or seen them before.
 
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IG

Guest
I used to think gene therapy would be it for me but then I got the transplant and I think that's moot point. [pretty sure it is anyway]
 
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anonymous

New member
For me, I've said transplant is the deal breaker...but, since I'm not actually at the point, I can't say for sure I'd still feel the same way if it actually came down to it.
 
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anonymous

New member
chipped away:

ohmygosh! are you serious about the throw up thing??? you've never thrown up? i couldn't agree with you more about not wanting to, but have never met someone as serious about it as i was. i have panic attacks when i feel nauseous and do everything i can to prevent up-chucking!!!!

wallflower:

as far as a deal breaker... i once told a doc i refused to take an iv med he wanted to put me on after i did alot of research online about it and some of the nasty side-effects it could have in the future... even if only taken once. it said online in several articles to only use it as a "last case resort". it also said it is not shown productive in helping knock out pseudomonas (which is the only thing i cultured at the time)! so, i called him and told him i would NOT go on it. even after he had ordered it and everything. he was NOT happy with me, but later said he was glad i'd done my research and put me on something else that worked just fine. anyway, my point is, that i will not risk my overall health for a cf treatment unless i am sick enough to warrant such things. if there are other meds that can help me without the terrible side effects (this one had said it can cause leukemia), i will try them first, and will only allow other drugs/treatment options if those fail to work.
 
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Diane

New member
My deal breaker has been a port. My doctor mentioned it after i got cepacia, and needed iv's more frequently, but i have been able to stay away from the idea. Am hoping to put that off for as long as possible.
 
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Captain

New member
wow, note to self: stay away from that drug!

I never wanted to see myself on 24 hour oxygen. Here I am though at 2 liters. I'm afraid of the ventilator..
 
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Debi

New member
I was on a ventilator 8 years ago for 5 days, and I still have nightmares about it. My dealbreaker is being kept on a ventilor as a way to prolong life. I might consider it again if we were pretty sure it would be temporary. My doctor and I even developed wording for my living will to address the issue of when to remove a vent if for some reason I ever end up one again. That gave me greater peace of mind. I am also not willing at this point to consider a transplant. Although it's great to read all the success stories, I have unfortunately known too many people whose lives post-transplant were just a long, slow miserable way of dying while being very doped up. They got some extra time, but horrible quality of life. So, keep those success stories coming, and maybe I'll reconsider as the odds improve.
 
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anonymous

New member
wow, what a topic...

I think about this a lot actually. the reason being so is that there are a LOT of treatments for CF that i have a really hard time with. For instance, I have never done PT...i never needed it when i was younger, and the thought of doing it now freaks me out. I don't want some stranger pounding on me, and who is going to do it for me now? My gf? My gf's mom? Ugh no way.

Another thing i had a huge problem was was nebulizers. When i was in high school, my pft's dropped quite a bit cause i was feeling crappy, so they wanted me on pulmozyme. I tried it a few times and couldn't handle it. It was noisy, annoying and just fustrating. I was not that bad....at least I thought. I think a big thing was the denial issue, which I think I still have. I am not sick, i will not need these things etc.

And IV's, oxygen....man to even think of it. It really really scares me. And because I am a bit worse, I realize that this could really be a reality. So recently i have realized that doing a nebulizer and clearing my self out is a good way to prevent myself from getting there. What I'm saying i guess is that the thought of being sick or dying doesn't bother me, it's the oxygen and the iv's. I can handle being sick, that's fine. It's the idea of people knowing that I'm sick that bothers me.

Also I think that as you start to feel weird all the time, ie tired, out of breath, weak cause of diabetes, you realize that feeling like this REALLY sucks, and you try to do everything in your power to not feel like that. That's a big influence of me trying to take care of myself. If i didn't have many symptoms, and knew that i could damage myself if i didn't do anything about it, I'm not sure I would. I procrastinate, deny and just ignore the bad things in my life...

Man, as I read this and think about it, i should not be someone with cf...hehehe. Is this just me? Do other people have issues about taking care of themselves? Maybe I've just given up? I dunno...I should stop talking now hehe

Someone who thinks to much
 
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anonymous

New member
This is a great topic - I think as CF progresses, you learn you can deal with a great deal more than you ever imagined! It seems like being on a ventilator is a common fear - recently was told that once any CFer waiting listed for transplant gets put on a ventilator, they shoot to the top of the waiting list.
 
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kybert

New member
i used to take chloramphenicol when i was younger because they were running out of options for oral meds. i too read up some of the side effects and was pretty freaked out by them. luckily nothing bad happened. its such an old drug though that hardly anyone even considers using it.

anyway, i refuse to take steroids. they stuff my body up in so many ways its unbelievable and very scary. by the way, the side effects i get arent just a lil bit of weight here and there. they are deadly serious. both mental and physical too. my last course was the worst course. after that one i made the decision never to take it again. on top of all the other side effects i had, i had severe muscle wasting for some reason on the last course. it got to the point where i could hardly stand up and i couldnt hold anything remotely heavy otherwise id start shaking uncontrollably and drop it. it was so bad i thought i was going to end up in a wheelchair if they kept me on it any longer. it was screwing with my brain even more too. on the previous courses it just made me a bit nutty but then i started to have whacko thoughts about how easy it would be to kill me and my family. it was so bizarre. i will probably change my mind about not taking them when i get to transplant stage [and id be pushing for the lowest dose possible], but apart from that, there is no way you can get me to take the stuff.
 
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JazzysMom

New member
I have spoken to my husband many times about what "measures" would be taken with my health as the years go past. I am not afraid of dying. I am afraid of lack of quality. I dont know what I would consider a CF deal breaker at this point. I usually dont think about it until the time comes. I just know that as it comes I decide it has to be or doesnt have to be done & proceded from there. My fear out of all of the extreme possibilities (such as the vent, tx) is my daughters response to it. Its one of those heart wrenching things that makes you wonder if having a child when you have CF was a selfish decision. I wouldnt trade having my daughter for anything, but I know what its like to watch a parent waste away in a hospital not able to communicate verbally & you have to interperate by the look in their eyes. I dont want my daughter having to go thru that, but definite alternative to her seeing me on the vent or recovering from tx surgery is not having me at all, right? What a choice!
 
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anonymous

New member
I remember being in denial and bucking every new thing the doctor tried to put me on.
Pulmozyme was a big one for me, I just felt that when you start Pulmozyme it was the beginning of the end. I don't know why I thought this, but in my mind I did.
I always research everything before beginning something new & I'm so glad I have this very forum to ask people about their experience/knowledge<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Foley catheter. Yup. I often wonder about Dr. Foley, whether he tested his invention on his <i>own</i> ding-dong, and how he felt about the dread his name would forever elicit. I don't know if it's a deal-breaker, but if I ever have an intimate appointment with the good doctor, I'd better be too doped up to care.

Q
 
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JustDucky

New member
Lots of good questions lately...Hmmm...I think the deal breaker was the vent, but ultimately I decided on the vent because I was living on BiPAP and O2 24/7 and was just too exhausted to do anything...even drink or eat, so even though I vowed not to go on a vent so soon, I decided on it and am doing okay on it. Another thing was the port, but after so many PICC's, I just got sick of those things and said okay to the port...haven't regretted that decision for sure! My port has been great and been behaving, so easy to access when I need IV's for my cepacia which is very frequent these days. In fact, I just finished a round not too long ago, they recultured 3 days after I was done and I was loaded with cepacia again, so ...back to the IV's. I think as things progress as another responder said, we face more and more decisions with our care. Things we didn't even consider in the past, we now consider when our health status changes. BTW, I agree about that Foley thing LOL!!! I wonder if he tested it on himself LOL!!! Hugs, Cepaciagal<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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lostreception

New member
my 1st deal breaker was a port then i had 20 or so holes in my anticube vein on my arm and said im sick of this, the next deal breaker was transplant but after being on 02 and having alot of hymoptosis im convinced it the better option
 
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anonymous

New member
i really never had a deal breaker. As everything came my way I just kind of took it and went with it. When I was younger I always said I would never get a feeding tube. Well at 72 pounds in my freshman year of high school, I didn't really see an option. Then I said I would never do a port...still never have...yay. And then I said I would never do the oxygen thing...well I did that too. Funny thing is, I never said I wouldn't do a transplant. Always wanted to do it at some point. I guess I was always curious to know what it was like to take a deep breathe. Now I guess I would say if anything happened with these lungs that being on a vent would be a deal breaker. I was on the vent for less than 24 hours post transplant and felt like i was suffocating. But who knows...never say never.
Margaret
Double lung tx 11.11.04
 
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princessjdc

New member
well, one of my deal breakers is going into the hospital, I dont want to be there unless it is real bad like for instance a collapsed lung or something of that sort, other than that Ill take home ivs, or I should say picc lines, ugh I hate them tho, Ive only had to have two tho, so far. Anyhow another one was transplant but after learning a great deal about it on this site, Ive changed my mind on that one and if it ever came down to it I would get one
 
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