Note the 'For now' part of the original statement.
At this stage, so late in the game (in terms of CF), you notice a million and one things that are wrong with you. Every little ache and every tiny twinge is noted and analysed to within an inch of it’s life. Most things, luckily, just fade away or are easily treated, but other things persist. The problem with these things is that people think you’re being a hypochondriac when you mention them and doctors often overlook them.
When I had my first SVT episode and my heart rate was around 220bpm my doctor brushed it under the carpet saying it was ‘stress’. And the second time it happened. And the third. And by the fifth I was diagnosed with a heart defect that I’d had from birth that had reared it’s ugly head later on in life by chance. Doctor should’ve fucking listening to me in the first place and instead of having nearly 9 months worth of trouble over it, I could’ve been operated on within 6 weeks.
Now I’ve found a lump in my right breast and I’ve kind of been ignoring it. Because my weight is fluctuating so much at the moment, my boobs are constantly changing, so I put it down to that. Plus my breast tissue has always been a bit abnormal (but fine according to all tests and scans and stuff). But for the last 2 weeks now I’ve been getting painful twinges in the area underneath the bump and my friend reminded me that being checked out is never a bad thing, so when I go to the hospital I’m gonna get it sorted if it’s the last thing I do. It’s probably nothing to worry about but better to be safe than sorry, right?
I’m sick of doctors looking at me like I’m some kind of idiot whenever there’s a problem - I may not have a medical degree but I sure as hell know my own body better than you do sunshine, and I spend enough time in hospital to know as much as the average nurse does about identifying problems with a patient that require referral to a doctor. I could also tell you about a million and one drugs that help a million and one ailments - shame I don’t have the authority to deal prescriptions…
I really do sound like a hypochondriac after the anorexia based post yesterday and the general health complaints of the here and now (throat infection, multiple chest infections, mental health issues, loss of apetite, chronic fatigue, the list goes on and on and onnnnn) BUT sadly this is the sort of shit you face when your body starts to shut down. Everything fails.
My speech at my Great Strides walk today. I was really nervous so please disregard the stuttering. But yup, this is what I worked on all last week. I made my whole team cry and I started crying too..
Hey you, if you’ve got five minutes to spare check out the beautiful Erin giving a speech on CF (the chronic lung condition I have/talk about) - it’s clear and concise and I think she did an excellent job. Plus she has the cutest sounding voice ever.
This is the broken end of my tube (the pink bit should be in my tube, not stuck like it’s been superglued to the giving set). And the other photo shows the tube I’ve just taken out - you can probably see that the end’s a nice shade of orange - smells like sick, which is always nice!
SO THIS IS ATTRACTIVE.
Someone on twitter asked for a removal video of the ng tube, and as the end broke off and got stuck in the giving set this morning (and I therefore have to replace the whole fucking thing) I decided to film it, eeeeven though I look rough as a dog (because I’ve only slept about 3 hours and have been worrying a little about loros).
Anywho, this is it…
Step 3: Tube Removal
Pretty much does what it says on the tin. First you’ve gotta remove the secure tape, obvious one (I use micropore tape and sometimes a sensitive plaster by my ear, both of which I change every couple of days - I’m allergic to most other plasters and tapes, particularly when used on my face). The tape did get a bit stuck on my hair as I pulled it off… I’m sleepy ok?! ;)
Then it’s just a case of slowly pulling it out. You may see snot/phlegm/stomach juices (don’t worry you won’t notice unless you look for it) and the end of the tube is discoloured because of stomach acid but it’s generally no big deal. The end of the tube is slightly bigger and stiffer than the rest so it makes some people gag a bit when it hits their gag reflex at the back of the throat - I don’t normally react but as I have a throat infection as well at the moment, my throat is the size of a pea and that tube was fighting to stay there! Haha.
The tube will now go straight in the bin as it’s broken and I have spares, but they can be reused for up to 2 months (no, not kidding!) - if you reuse the tube you just wash it with hot soapy water and use a syringe, making sure to squirt through and keep it clean on the inside as well as the out. You’d then flush it with plain sterile water and finally air, before kitchen roll drying the outer, replacing the guide wire and storing it in the original packaging or a clean tupperware tub in a safe place!
Hope this is helpful, sorry it’s a bit gross, can’t be glamorous 24/7…
Just followed a shit load of people on the ol’ Cystic Fibrosis tag because for some reason I didn’t have ‘em. Are there loads more of you or something because I don’t recognise half of you…? There’s probably more that I missed or haven’t got to yet, idk, but I’ll get there eventually.
YOU’RE ALL SO ATTRACTIVE I CAN’T DEAL. The 7th chromosome might be shit but the others… well…
IT’SA ME, again.
Part 2: Checking The Position
Firstly I take a clean enteral 50ml syringe (oral syringe basically) and pump a small amount of air into the ng tube. As you may be able to hear, it sounds like a stomach rumble - it is! I pump air in to a) check there are no blockages and b) push the end of the tube from the stomach lining (sometimes it sticks). I then pull back on the syringe to suck out my glorious STOMACH JUICES. I test the juices on pH paper - if the paper is pink in colour at the top, it’s within the range. To prove that the tube is in the stomach and not the lungs, the pH should be 5 or below, that pH was 3.0, as you can see in the following photo post! The lungs are far more neutral than the stomach and have a higher pH, although you can have dodgy readings if you’re prone to acid reflux (acid from the stomach entering the lungs through regular vomiting or coughing etc). The floating bits of food tend to be the dead giveaway… If the tube is in the wrong place it should be removed immediately as feed in the lungs can KILL YOU!
After this I flush the line with sterile water. This gives the line a strange feeling in your throat - you can feel the cold sensation of the water without the wetness? Strange way to describe it, but anyone that’s had it will know what I mean! And that’s it, ready for bolusing (pushing things down with a syringe, like drinkable supplements or even some oral medication) and for setting up feed bags (concentrated liquid calories/protein/etc, in bags, dripping through a long line and a pump device)!
Hope this was insightful? Will endeavour to make a proper video some time, with feed pump and bolusing and some sort of voice over or commentary, when I get my voice back!
As it’s CF awareness month and I needed to put a feeding tube in, I thought I’d show you how I do it myself :)
Some CF patients need feeding tubes to help them gain weight - as we have problems with malabsorption, most CFers are on a high cal, high energy, high protein diet, and are told to consume between 3000 and 4000 cals A DAY! For those of us that struggle with regular food, shake and juice supplements we have NG feeding (nasogastric).
People with other conditions commonly use these too, including people with various stomach problems, those that have undergone major surgery and those recovering from eating disorders - I hope this shows them and everyone else how easy they are to put in yourself when you master the technique!
Part 1: Insertion (ps sorry for the noise my broken boiler’s making!)
Firstly you can see me wetting the end of the tube to lubricate it - this helps to get the end past the two main difficult points: the back of the nose and the top of the throat. Both of these areas are highly sensitive and it’s important that the placement of the tube goes right in the right direction in these areas. When the tube hits the back of the nose you want to make sure that your head and chest are upright and that the tube is at a 90 degree angle to your face, so the tube goes down and not up (into your brainzzz). When the tube hits the back of the throat you need to push it past the epiglottis (the flap in your throat that covers your lungs when you eat and let’s air in/out) and the easiest way to do that is to DRINK. The liquid closes the flap and the swallowing action helps the tube to pass down more quickly. You may have to pull the tube in and out a bit before you slide past the epiglottis as I did, but you get past it soon enough.
Once you’ve hit the hard parts it’s important to keep pushing the tube in. Before it’s inserted a stomach measurement is made - there is a certain point at which it should sit, slightly curled, in your stomach and you can measure this outside the body, using your stomach/ribcage and the numbers on the tube as indicators. I mark my number with tape so I know when to stop. I then remove the tape, pull out the lubricated guide wire (that helps the tube stay stiff as you push it down), tape the tube to my face so it doesn’t slip and KAPOW! Step 1 - done!
Congrats to Dan and Hailey on their engagement! Hoorah!
Dan is one of the guys from ‘camp CF’, as I often refer to it. It’s nice hearing that anyone with CF is giving life the finger, by having babies or getting married or climbing the career ladder or whatever else. Far too many feel like they can’t or they won’t do those things because of CF, but I’m glad that Dan’s not like that! Excitingggggg!
Nail clubbing is a nail deformity common with certain lung/heart diseases and is one of the symptoms used for diagnosis in Cystic Fibrosis (CF).
If you bend your fingers and put your nails together like in the diagram above (pic 1) you can see if your fingernails are clubbed or not. Clubbed nails commonly make the ends of the fingers more bulbous (pic 2), but that isn’t the case with mine.
The 3 photos underneath are of me (hellloooooooo) and my nails. Although my nails are clubbed I still have a slight schamroth’s window (pics 3 and 4) and my nails appear to be quite a normal shape (pic 5).
so seeing as its Cystic Fibrosis Awareness Month. i’ve decided everyday for the whole month i’m going to find a youtube video which i find to be inspiring to CFers or will help give an insight into everyday CF life. EVERYONE (looking at you here, yes you reading this hovering over that play button) should reblog it. it is my mission to raise some awareness this month with the lovely people of tumblr! Get Reblogging!
Video 4 for Cystic Fibrosis Awareness Month
Although this is nice and a good generic insight for non cf-ers, and a positive insight FOR cf-ers, it’s also doing the wrong thing. By the wrong thing I mean it’s tooooo positive. So when people like me (end stage transplant list) go into hospital other people just perceive us to be like young Ryan here, playing our sports and doing our meds and getting mildly embarrassed but carrying on life with vigour. BUT the fact is that when you get past a certain point this condition absolutely cripples you - people say ‘it won’t get me if I don’t let it get me’ but it’s a progressive fucking illness, it will get worse eventually, and unless there’s a cure found before your PFTs drop too low, you too my friend will eventually be looking to an abyss called end stage CF and end of life as you and everyone else lucky enough knows it.