The Denmark Way

[wuffles]

I'm not sure what I think about the issue. I think it's wonderful that they are able to prolong life and think there definitely needs to be more exploration about the exact reasons for this kind of treatment working so well. However, I'm not sure that 3 monthly IVs would be right for EVERYONE.

I have never had particularly aggressive treatment. I can't say whether this will affect the length of my life but I can't see myself regretting these decisions either way. It means I've had as much of a chance to be "normal" as possible and I enjoy this. IVs every 3 months would force a rethink of my entire life: I probably wouldn't be able to have the career I wanted, we would be VERY short on money, relationships would suffer, etc.

Of course, if going for IVs every 3 months had no financial impact on myself or my family, my career didn't suffer and hospitals had a little more "oomph", my opinion could change. Ha! I think I'll be waiting a while <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Kybert.... i noticed that same thing about being resistant to a med i never used. Kind of odd. The whole resistance thing in my mind is overblown. I.... also like you.... have been shown to be resistant to certain antibiotics yet they work wonders. The key to resistance is combos of antibiotics. Its hard for bacteria to build a resistance to a combo of antibiotics . I was resistant to every (single) antibiotic on the results sheet ( even ones i have never taken) , and yet when put in combo categories, they had effect . They work synergistically and that is more effective. I've never had as much expericence with all of these antibiotics and how they work till i got cepacia and started requiring them on a constant basis. I too was afraid years and years ago, long before i got cepacia, when my doctor put me on an antibiotics for prophalactic measures that i would develope resistance. When cepacia came along there was no more "saving" antibiotics for when i "really" need them because i really need them now.

 

[NoExcuses]

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[Asexyblond23]

Do you think that you would get some of the same effect if you did oral anitbodics every 3 months? I know alot of us are on zithromax every other day as a normal now. But what if you didn't do IV's and you did oral meds. Do you think that would help you out also. For the people that are resitant to alot of meds and are running out of options with the IVs. I know personally that I cant afford to use thenm every 3 months. I have used them so much in my life that

1. I have to run fluids for 12 hours everytime I am on Iv's b/c being on them so much has made my kidneys start to fake off from the toxicness of the drugs

2. I know that I dont have alot more durgs or combos of drugs left that I can use, I really do need to save them for when I am sick.

 

[anonymous]

I agree with Amy. I think sensitivity would play a big part in that. Yes some people are resistant to drugs whether they have taken them or not like Kylie said but still if you're not on any they work better when you need them. At least that's what I think. And besides there is no way in hell (pardon the word) but I would not go in every three months unless I had too. I have a life that I want to live as normal as possible. And I'm sorry but going into the hospital puts a damper on things. Another thing is that my veins are so shot already if I went in every three months there would be nothing left. I've already done a port and it did not react with my body correctly and built up so much scar tissue in that major vein they can no longer put ports in. I'm sorry I just had to vent about the every three months thing. I so do not agree with it.

Nikki
26/f/cf

 

[tonrsoul82]

LOL I am going to move to france <img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>
usually in my hospital i get 1 window and its view is a bunch of
dead trees that need to be taken out...

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tonrsoul82</b></i>

usually in my hospital i get 1 window and its view is a bunch of
dead trees that need to be taken out...</end quote></div>

LOL - my view is usually big grey skyscrapers. You can barely ever see any sky.

 

[Diane]

Maybe you guys can do the iv's at home when you have to? I dont know if you are comfortable with that, or if your doctor would allow it , or even if your insurance would cover it , but doing them at home is the way i always do them ....unless i am having problems with hemoptysis then i agree to go in, but i hate to be in a place that is so full of opportunistic sneaks ( bacteria) .

 

[thelizardqueen]

I know that I am able to do IVs at home - that the government covers it for me. I've never actually done home IVs, but last time I was in hospital the home IV nurse came to see me to talk about me going on the list. Turns out that the list was fairly lenghy, and I would have still been waiting had I not decided to due my treatment in hospital.

 

[anonymous]

This is an interesting topic and one i've often wondered about myself.

I was misdiagnosed until 19 years of age and put through every invasive and disgusting test known to man before i finally suggested they do a sweat test, which turned out positive - they had done one on me at 5 yrs of age but it turns out they had burnt me with the electrodes so I threw a false negative.
So I'm understandably very cynical about doctors and hospitals now so when they agreed i did have CF at 19 i grabbed the enzymes to stop my constant diarreah and split - never to go back.

so except for oral antibiotics when my cough got really bad (average once a year maybe) from age 19 to age 37 i did absolutely nothing for my condition except enzymes (and i kept pretty active as I always had been). BUT i also drank like a fish and took enough illegal substances to make your hair curl (I thought i had only a few years to live so was on self destruct).

Now when i finally ended up in hospital at the age of 37 with a bad infection that needed IV's, they did my PFTs for the first and only time - and it shocked everybody because we all assumed i was 'mild' but my fev1 was only 36%.

Now, i've always wondered, what would my pft's be if I had actually 'managed' my cf instead of ignoring it and partying like a lunatic for 18 years? Oh and did i mention the BAD marijuana habit i also had for all of those 18 years? Or the pack a day cigarette habit i had for 15 of those years?

So, I severely regret my decision to not manage my cf more aggressively. Yes i've lived a pretty normal life as in my cf stopped me doing nothing...but sometimes i wish it had!! I no longer smoke cigarettes or marijuana, i don't take substances and I dont' drink. However i now take oral anitibiotics every 3 months regardless of health and I do IV's every six...again regardless of health. I keep my weight as high as i can, which is still very scrawny, but I eat regularly and i eat well. I take ADEK's and probiotics every day.

Im due for my second ever pft's in 2 days and i'm extremely anxious as my treadmill blew up so i haven't been exercising......I will be interested to see what these pft's are and whether it's time to start assessing me for a lung transplant. I'm scared, terrified actually, but i only have myself to blame.

I will now be as aggressive with my treatment as my little body will let me be. As i strongly believe, if i had been all along, my lung function would be at least twice what it is now.

 

[anonymous]

Are people no of the opinon that goes 'if it ain't broken, don't fix it'?? I mean sure, great, this is promising I suppose, but think about all the 30 year old cfers out there who have need ivs like 5times in their lifetime and are still doing grand. Now imagine you'd have made themtake ivs every three months since they were 5. It would have been pointless, they'd have been fine anyway.

 

[NoExcuses]

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[kybert]

totally agree about the very mild cf cases. but for the rest of us, the proof is in the pudding. i know for a fact that if i had been treated aggressively when i moved to adult care, i would not be in cruddy the position i am in today. its only taken 6 years on non aggressive treatment for me to lose 40% lung function! id much rather be resistant to antibiotics and have a high fev1 than feel like i do today. heck, despite taking the weak approach im still resistant to almost every antibiotic anyway. so what did all that "oh we will hold off treating that massive infection for a while, dont want resistance" do for me? NOTHING! oh, it did something, permanently took away a huge chunk of my lung function *shakes fist*

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

the majority of CFers don't reach the age of 30 and have only had IV's 5 times in their life. that just simply isn't the case at all. so ya, maybe those handful of people wouldn't have benefitted.

</end quote></div>

If the median life expectancy is 36, then surely the majority of CFers do reach the age of 30, by definition of the word 'median'.

 

[anonymous]

She said reach the age 30 AND have only 5 IV"S.....

z

 

[NoExcuses]

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[blackchameleon]

is the "if it aint broken dont fix it" thing sensible? if
my car aint broken i still have it serviced or else i am sure the
heap of crap would shite itself eventually, beyond fixing, beyond
repair, beyond hope!!!!! or am i just beyond a joke?

 

[NoExcuses]

.

 

[blackchameleon]

and just thought i would throw in i am driving that heap of shite
to Sydney tomorrow for a two week "tune up", its been six
months since my last admission so its time to follow my game plan.
do i want to go?, about as much as i would like to go to have my
prostate checked. will i go?, yes- because to wait until i am sick
to go into hospital is like bending over and inviting cf's nasties
to rampage my walnut. why wait until the PA builds up a huge
f**king army then attack it with iv's when i can use the same iv's
and bone out the little colony's of PA quicker than the pope can
say a hail Mary? think about it..........

 

[Ender]

Hey thanks for the info Amy. That's pretty interesting.

You know, docs here in the west are all about resistance etc, but apparently it isn't the case if 80% of cfers in Denmark reach there 5th decade of life. I would also be concerned about kidney damage, but again, it seems like it is not the case, as long as blood levels are properly managed.

That being said, you know, the idea is great, but it isn't really fixing the underlying cause of the infection. Ok well, the underlying cause isn't really fixable right now, but the CFTR proteins do also affect some other aspects of our chemistry as well...along with our digestive problems.

A few examples are DHA, Gluthathione, NO...raising those leves helps with the inflammation and our bodies susceptibility to getting to the point where we need iv's in the first place. I wish more hospitals, patients would be more proactive in that area. Then maybe we wouldn't need the iv's in the first place.