Greetings blog readers, that's if there are any regular blog readers that is. I've been off the radar for a while making positive changes to my life which have led to a happier me, so all good there then.
I thought I'd best just pull my finger out and get blogging regularly again then. Every little helps with CF awareness and all that. So, what to blog about pray tell?
As it is coming upto to the festive period, I've started noticing all the token 'must start dieting for the Xmas' type tweets and Facebook statuses from people.
That's right, human beings are annually gearing up for their two week greed and gluttony fest as is the case every year, starving themselves or indulging in some revelationary 'new' diet fad which consists of fucking their bodies up by ingesting only juice/soup/grass or whatever the multi-billion dieting industry tells them is the 'absolute guaranteed' way to lose weight this year.
Hello manipulation central. And all for what?
Anyways, before I engage full rant mode about normals and weight I thought i'd write about weight gain and the problems people with Cystic Fibrosis face in trying to keep theirs up, so here we go.
As some of you may, or may not know CF doesn't just affect the lungs it also affects most primary organs in the body in some way including the pancreas. The same thick, sticky secretions which clog and infect our lungs also inhibit our ability to digest food properly. This leads to malnutrition in many people with CF and a constant, neverending and quite tiresome at times battle to gain and maintain weight.
Here's a picture of all the stuff CF *can* do to someone:
In order to assist our pancreas in breaking down food properly many of us take pancreatic enzymes with all food and drink consumed. Here's a pic of the ones I take called Creon 10,000:
These are little capsules which I take whilst eating all meals and snacks that help break the food down and assist the pancreas in absorbing nutrients and vitamins and so on. My dose currently stands at 6 with meals and 4 with snacks although I can change this depending on size of meals and fatty content of what I eat.
What happens should I forget to take them or if I run out? Intense stomach cramps that floor you and epic runs requisite with ring sting on the old brown eye so it's usually a good idea to make sure you always carry some in your bag.
Now, I've always managed to keep a good weight on me over the years. When I'm well it is usually between 70-73kg and I'm not a fussy eater so it has never really been an issue with me, I've been one of the lucky ones for a long time.
However, last year when I split with The Girl and all of the associated emotional trauma that come swith such things, my weight plummeted to its lowest ever of around 66kg in just over two weeks from what had been a respectable 72 kg (relationships - bad for your health or what?!).
At the time I was in my critical final semester of my undergraduate degree and desperate to stay well so I could successfully complete that with gusto. After discussion with my hospital dietician about the potential risks of any added infection which would cause my weight to plummet further (when you're ill your body uses calories to fight infection hence why good weight is essential for people with CF) and leave me seriously ill, a joint decision was made for me to start Naso-Gastric feeding regularly in the hope that it would help me regain lost weight and act as a buffer in the last few stress filled months of university.
I was gutted, I won't lie. Despite being mature about it and knowing treatment increases the older you get due to your CF getting worser I was still pretty upset by this as, well, feeding with a tube down your nose just isn't sexy so the vanity worries/issues of how it would look to any potential girlfriends raised their heads. Needless to say I soon put those to bed and was admitted into hospital for the weekend to learn how to undertake the treatment at home. I mean, if anyone can make a plastic tube going down your throat and then stuck to the side of your face sexy, I can. Right?
SO. All went well in hospital as I was only admitted for the weekend and I swiftly returned home to continue to feed overnight under my own supervision.
Here's a run down of what happens and the equipment I use. Firstly we have from left to right: a standard infant feeding tube, some scissors, the all important tape, lube (handy for the ladies too, if needed), a PH strip and a 20ml syringe:
I usually start by unwrapping the feeding tube, which is numbered and adding a little tape at the mark of number 65. Why? Because the tube is lined up from your belly button to your nose when you first start feeding to provide a rough estimate of how much length is needed to get down into your belly, too little and your feed could run into your throat, and too much could result in it coiling up in your windpipe which wouldn't be cool at all.
I then dip the end in some lube, sliding it in gently, but deeply as the moist, sticky wetness engulfs my..... oh shit, sorry I was going all '50 Shades' then. My apologies. So yeah, I lube up the tip (it still sounds sexy - fuck!) and slowly start inserting it down my right nostril. Now this is the bit that usually makes people gip, my ex couldn't bare to watch me do this but it really isn't that bad and doesn't feel bad either. It is akin to slowly swallowing a really long piece of spaghetti, the only tricky bit is when you get to your trachea as if you get it wrong you inevitably gag and start coughing loads which is what happened to me on my first attempt.
I should just now make a personal apology to all the girls who I have made gag in the past whilst performing sausage swallowing on me as I now know what that feels like in some sense. You have my heartfelt and sincerest apologies ladies.
Anyways, once you get to the marker on your tube and if all feels well then it is usually a good bet that you have successfully completed accessing your stomach so you strap your tubing to the side of your face with some tape. In order to further underline things are right you must then draw some bile from your tube into the syringe, not much, just a ml or so and then test it on the PH strip. This ensures it is in the right area as you really don't want to have mistakenly threaded it into one of your lungs.
That wouldn't be cool. AT ALL.
Next step is making your feeding bag up. I'm prescribed 4 tubs of Ensure TwoCal which is a weight gain supplement rich in calories and nutrients. Each tub contains 400Kcal meaning I'm ingesting 1600Kcal whilst I'm sleeping as my feeding pump is set to a 100mls an hour rate. Some people with CF choose to have their feeds running at higher rates to get it over and done with quickly but not me as rushing it can lead to exacerbating bowel problems which really isn't cool so I'm a good boy and stick to the guidelines set by my dietician.
Here's the tubs of Ensure TwoCal:
Here's the feeding bag attached to the pump:
And here's me all tubed up (with oxygen too). Who could resist such sexy bedtime appendage I ask you?
So yeah that's the basics of it all. After a few months of overnight feeding I successfully managed to regain all of the weight I lost and it was decided to continue feeding as I could feel the benefits. I had more energy, my weight was up and my appetite was better throughout the day too on account of the feed stretching your stomach which is all great stuff. I've even recorded my best weight ever at clinic since starting the treatment so if anyone is thinking of starting it, or it has been suggested by their CF team then I'd really advise them to go for it.
It does have its drawbacks though, sometimes and especially if you have overnight oxygen too you can wake up in the night with your tubes wrapped round your neck and such, and overnight feeding can exacerbate/help the onset of Cystic Fibrosis related Diabetes, however regular checks on your blood sugars at outpatients and as an in-patient will help keep an eye on this and shouldn't put anyone off. And as mentioned, it doesn't look the sexist but you know what fuck it, who cares?
That's about it then, if anyone has any questions then feel free to comment. I'll write another blog following this one up about why normals moaning about their weight pisses me off when I have some more free time.
Until next time, stay sexy you beautiful bastards.