Incase you have not figured out yet, I have Cystic fibrosis. This rant is pertaining to that.
I need to rant about this, perhaps you will agree or disagree, either way I recommend you follow doctors recommendations, as they are your doctors. Do not do so blindly, because at the end this is your body and you need to be realistic with what you are doing to help better yourself.
Recently I filled out a form where the doctor got to provide input on how medication compliant I am (among other things). 10 was the best, and I scored a 2/10.
Two out of ten. So basically there are worse people that are compliant than I am, but not by much. Let's review how I feel about this. Firstly, I think it's a stupid scale and it should have doctor feedback as well as patient feedback for this, as there may be a valid reason for not listening to what the doctor says blindly.
So here's my reasoning.
I have two gene mutations which are rare. Both mutations put me into a 10% or less bracket of symptoms and life than anyone else with CF. I am more fortunate than most, I can work a fulltime job, I can do things as if I'm basically healthy and "normal". (I don't use the word normal often, but i think it fits here). So given that I've done a small subset of research on my illness, and the 2 mutations that I have, I consider myself a little educated on the subject. Just slightly, given the research I have seen and what information has been presented to me.
I have 2 genes that put me into a weird bracket of CF. There's no real treatment *yet* for per-gene therapy. Kalydeco is the first that has come to the market to offer a solution to specific genes. Hopefully it's the first of many. Current meds for "CF" as bundled as we are, are basically put onto the market after given studies to various gene types and up till now have basically been for preventative maintenance. There's no promise that taking these medication regime will help or delay the failure of my lungs or the decline of my lung function, but since research has proved that they do something, they have been released onto the market about 5-10 years ago roughly. I could look up exactly but for this rant, I'm not sure anyone is going to be fact checking here.
Every time a doctor recommends something or a nurse harasses me about the doctors recommendation I just want to scream. Has this been proven for my genetic mutation? No probably not since my genes are rare. They have been proven to help on wide range of mutations though, so it should help... That's basically the answer I receive. There's basically no gene by gene researching going on. There are classes of genes which I have recently learned about, which potentially could help this medication debacle and problematic "medication taker" that I am, I think it would be good to classify things as such.
Am I seriously the only person who refuses to do anything blindly? Firstly, I respect professionals opinions, and I am always nice to everyone I speak with or see. I can appreciate the advice of someone who is dealing with people with similar illness. I can always appreciate the quality of care I receive as well. However I am not just going to put anything in my body without researching first, and I'm not going to just "listen" to anything you say. Statistically it's very unlikely that there are many people with either of my genes. It's probably even more rare that there's someone with both genes that I have. So you expect me to basically listen blindly to everything you are recommending, when 90% of the people you recommend things to have the same genes, and I do not.
Am I in the wrong here? Nurses seem to think it's okay to basically talk down to me in regards to my "treatments" when I tell them how few medications and treatments that I am on. I call in because I have caught a cold, they ask me what I'm doing, I tell them, its basically like I'm shooting myself in the foot. They tell me I need to be doing x,y,z. I don't even argue anymore I just accept that they have this set of bullshit for every CF person and I have to pick and choose what I think will work best for me.
I tried. I've tried so many times to work into my life this "regimen". This is what my day would look like if i were to do everything that was told to me.
7am: wake up.
705: take inhaler and wait 15mins
720: take hypertonic saline (20min treatment)
740: wait 15 minutes after HTS to do breathing exercises
755: Either use the vest for 30minutes, or breathe into this device that basically helps break down the mucus for about 15 minutes
810: Inhale tobe - 10~ish minutes
820: After airway clearance ^ , do another breathing treatment of Pulmozyme (10~ minutes)
830: Finally start getting ready for work?
And then basically the same thing in the evening. So approx. 3 hours of my life, everyday, to treatments. I love when they tell me to do something THREE Times a day, so somehow I have to fit that into my schedule. I once had a nurse ask me if I could do a neb while driving in the car.
Don't enough people do shit while driving that they shouldn't? Is my car self driving? What about the shifting because I drive a manual? When do I have time for breakfast exactly? (not that I'm much of a breakfast person anyways)
So the reality of this rant is that, no I'm not spending 3 hours of my life everyday to do things that COULD potentially help my condition. I have absolutely no problem doing something that is relevant to my gene-type. But if you're really going to just tell me to do something (and harass me when I don't in the form of talking down to me) without providing accurate data to me, it's going to get overlooked and not going to happen. Why? Because it's simple. Less than 10% of people have one of my genes. I sincerely doubt that makes up much more than a few people per large city, since the CF centers are in the large cities i'll use that as my benchmark here. So less than a few people, and somehow we're all supposed to be good little people with CF who follow every order the doctor gives us.
Present me with data pertaining to my genes, and I will happily oblige. Till then I'll put up with the downtalking on the phone, and the 2 out of 10 rating they provide me with. Why do I even bother goign to the doctors exactly? Oh right, because maybe one day they can prescribe me a medication that actually helps the problem with my illness and not the symptoms. As a society we take too much and learn too little. I'm not going to feed into that or get anymore into that.
That is all, /endrant.
