What do you guys and girls do in a normal day?

Hello everyone! I am 16 and I have had CF sense as long as I could remember. I'm new here and I just wanted to know what things you do in a normal day?

For me I usually get up and skip breakfast (I don't know why I just can't stand breakfast food or any food for about 1-2 hours after I wake up.), about once every 3 days I do Hypertonic saline 10%, then do my vest. After that I would say I might go weight lift or ride my bike all depending on how nice it is outside.

I also had a few questions, I just recently found out that males with CF have a very low chance they can father children, is this true? I have wanted to have kinds for quite a wile. (Of course not at this age but when I am in my 20's / high 20's)

I also wanted to know has anyone else here drank? (Such as vodka, gin, ect...) I just wanted to know what you thought of it and your experience (Like did it make your lungs or did you have a really bad effect to it and sent you to the hospital.) I have done it before and quite a bit, but I just wanted to know if anyone else had any bad problems with it.

Thanks for any replies and if anyone would like to talk on aim my address is koalaz2004, if you do aim me just say your from the CF forums :)

Hi there!

I have a habit of skipping breakfast. I'm getting better recently, as I started having really unusual, none-filling breakfasts. I don't generally like breakfast either, and do wait at least an hour after I've woke before I even consider breakfast. I also find, I get more nutrition and stuff from dinner, so if I skip breakfast, I have 2 smallish dinners to tide me over till tea. Every now and again, there's times when I just can't eat, no matter what time it is. Those days I turn to a total liquid diet of fresubins and Skandishakes. Keeps my nutrition up, with out making me have to force food down my neck.

Your physio and excercise regime sounds exausting, but as long as it doesn't tire you out too much, then doing that much is brilliant, and will keep you in the best condition for longer. There has been a lot of good stuff said about the hypertonic saline. When I'm particularly groogy with my chest, I just have 0.9% saline nebulised. I've been doing that for about 4 years, before I even heard about the hypertonic saline. The 0.9% works well on my lungs, as I tend to spot an infection brewing 2 weeks before it really sets in.

On the whole drinking thing. I started drinking lots when I was 17. People with CF are at an increased risk of getting liver cirrohsis. Which isn't helped by drinking.
To begin with I had no problems getting absolutely obliterated, then having no hangover and being bright and cheerful the next morning. Which annoyed people very very much. In the last year however (I'm 21 now), I've found that I wake up groggy, pounding headache, no coordintaion (veering to the left, even though I'm telling myself straight) no balance, and lungs that feel really tight. I also end up coughing so hard I end up vomiting.

I guess it's your choice on the alcohol front really. If you have an annual review at the hospital, they will do ultrasound to check your liver texture, and also take levels to see how high some of the levels are in your liver.Some people with CF hardley have the damage from alcohol, whereas some people do. If your doctor does notice a problem however, he will most likely put you on ursodeoxychloric acid, to avoid anymore liver damage.
This past year I've been told not to drink alcohol or caffeine, but that's nothing to do with CF.

Lol, that's how often I drink nowadays. I don't drink as much as I used to, but like you say, it's just nice to chill out with a few friends. You end up feeling very isolated if you totally ban yourself from alcohol, as everyone is drinking around you.

The only reason I got banned from both substances is my psychiatrist decided I was using both caffeine and alcohol, too much to control the way I was feeling. If I wanted to be hyper with my friends, I was having 6 really strong coffees in a row straight after each other. For just a normal day I was relying on it, so I didn't have to nap during the day. Trouble is, it was messing up my sleep pattern a lot, and if i couldn't have a coffee, I was feeling worse.
Same with alcohol, is that I was relying on it to make me forget. But I was relying on it far too often, and kept trying to use it to sort out my depression. But again the next day I just ended up feeling worse.

My daily routine: (had answered the post not the actual question. sorry!)

Get up about 10am
Check my emails and stuff, while doing my ventolin inhalor then PEP mask then INeb
Have breakfast about an hour later, or wait 2 hours and have small meal, or make a skandishake with my own recipes so added calories, then have my morning meds.

Without caffeine, have an hours sleep.

about 4pm have a small meal with afternoon meds.

At about 5pm have another hours sleep. Eating tends to make me incredibly sleepy these days.

about 9pm have another small meal. Make this one as calorie filled as possible by adding ketchup or salad cream or loads of cheese. Have a dessert if I can manage one, adding extra sugar for the added calories. I do this because dieters are told not to eat a meal after 7pm because you don't burn off the fat while your asleep, and it just stores it. Obviously by me doing this, I get a huge dose of calories before I go to sleep, and they all go into storage. I only have a very small meal now, so that I don't feel bloated. Have my night time neb and meds aswell. Including painkillers and antisickness meds to make sure my sleep stays undisturbed. I only do my physio at ths time if my lungs aren't to tired.

about 10pm-11pm I go to bed. Tend to get to sleep quite easily, unless I'm feeling particularly reathless, then it takes lots of ventolin and extra pillows to ease my lungs enough to sleep.

As you can probably tell, I don't work or anything. I also rarely leave the house, as I have been ordered to do as little excercise as possible. (doctor's realy do just spoil my fun:P)


Luckily Ive never needed overnight feeds. whenever they mention my weights dropped to low, and they might have to consider it. I start getting hooked on skandishakes, so I'm having 3-4 a day along with food with as many calories as possible shoved in.

Never having a totally deep fried meal ever again though. Not very good on the toilet, and 12 creon don't quite cover it. lol

My inhaled antibiotics go through my INeb, which is a funky little handheld nebuliser. It only nebs Colomycin (AKA: Colistin/Promixin). Sorry, I forget that nebuliser names aren't usually very helpful when trying to determine what medication someone is actually taking:(.

I've been taken off my INeb now though, due to allergies, and put on a really old machine that makes me sound like darth vader. I nebulise Tobi now, and it takes 20-30 minutes rather than just 3 -5 minutes.

Not alowed to do any excercise until a certain slow doctor at another hospital sends off my tests for Muscular Dystrophy. Until I get some results, I can only do 2 minutes excercise on my core muscles by sitting on a chair and slowely lifting my legs. Because other excercise on my shoulder and hip girdles can make some muscle enzyme levels rise ridiculously high past 14,000 when they should be no higher then 200.

I've also just been unbanned from caffiene but stricter rules put in place on alcohol.

I also now have a lower Lung Function % thanks to no excercise, and my lungs are very grumbly about it. Just need these results so I can have half my meds back, and know how to go about getting some excercise done to strengthen me back up.

Lets see, my routine...

 

I wake up in the morning, walk the dogs for about an hour

Then I go clean horse stalls and ride for about 3 hours

Then I come home, do my online classes (6 of them)

Then I walk the dogs again

and then I do nothing worth telling you about

(treatments are sposed to be in there somewhere, I do them once every 2 weeks tops, unless I'm sick)

To make it to school on time I have to get up at 6.00-ish everyday and have ventolin and Pulmozyme neb (which requires a wait of 30-60 minutes before physio) and then I do physio (I do flutter for physiotherapy) followed by tobramycin nebs if needed and seretide. I then have brekkie, which consists of my tablets which are creon, singular, resprim, vitabdeck, azithromycin and a few others when my health calls for them. Can't hurt to take a vitamin c or echinacea, garlic, zinc and c tablet though, can it!?!?
School's pretty much the same. I go home and do physiotherapy again and then with dinner I have resprim again. Whenever I have something with fat in I need creon - one creon tablet per 8 grams of fat. Also, I'm on fat substitues to gain wait which is ten grams of liquigen (diluted fat from coconut milk) with brekkie and dinner and skandishake which is a milk shake with 30 grams of fat per cup that I have to have 2 times a day to maintain a healthy weight. I am 165cm tall (about 5'4" and a bit) and 48-54kilos, when I am sick 48 and well 52.
Alcohol - my doctors always told me to stay away from it but I've tried it a few times and it doesn't have that much effect on my CF, but it definitly damages your liver which is a no-no because most CF's livers are already under so much stress from the medication you are taking and they have to work twice as hard as the liver of an alcoholic, that's a fact. So try not to drink excessively because it ruins you in the long run.
Male fertility is a major issue with CF and it's true that most males find it hard to reproduce, but there are many who can. Females have the exact same problem (obviously with different organs, though lol) because of the mucus build up inside them.
At this moment I have just came out of surgury for having my gallbladder removed. CF's tend to have gallbladder problems too, so remember that fatty foods contribute to gallbladder problems and even though we should eat a high fat diet we should still include HEAPS of fruits, vegetables etc etc etc to keep our insides healthy because we need healthy organs too. Having my gallbladder out was a bit of a trauma because when I was 1 day old I had emergency bowel surgery (bowel obstuction) and I died 3 times and at one point they had to ship in a drug that wasn't legal in Australia yet from France and combine it with the 5 strongest antibiotics they stored in Australia because I was resistant to everything on its own due to a blood infection from a bad drip.
A few years ago I had a infusaport placed on my chest wall and if you are a regular hospital patient I strongly suggest you get one, it makes life so much easier and less traumatic, just some emla (numbing cream) and they put the needle in your port, you don't feel a thing, and that's your longline or central line done! They can last for up to 5-20 years (I know somebody who's had one for 21) depending on if you look after it and how much you use it. It can be needled thousands of times and saves stress and time during hospital admissions. You can find out information about it if you're interested on the internet and it really has been the best descision I have ever made in my life!
I'm at my healthiest now, I'm recovering from my gallbladder surgery and my lungfunction is 109% which is the highest it has ever been!

Ciprofloxacin I am on and off, mostly on during the summer.

Ursodeoxycholic Acid, to stop my liver getting worse. I was started on it at age 12/13 after a liver biopsy showed I have mild liver cirrohsis. I've ben on the same dose all along as since starting them, the cirrohsis has stayed at the same level, not got worse or better.

Omeprazole, to treat acid reflux.

I completely agree with you about ports. They make life SO much easier.
Where mines placed on my chest wall, it means I cant go on rollercoasters that have straps on them. Just incase the force crushes my port.
It's not much to give up though, considering the pain longlines were to get in me, for them just to last 4 hours at a time.

Nah, it sounds about the same area.

I was told to avoid rollercoasters with straps that lay over my port, because someone in our clinic had recently gone on a coaster, and there port crushed because of the force.

I'm very well guarded over my port (it drives nurses crazy), because I don't want to have the op for a new one. Even so much as not heplocking under pressure causes me too go mad, because I've had 3 close calls with blood clotting in my port.

At school, I won't have noticed it, because I was really lethargic all of the time anyway. I hated school, so spent most of it just walking round like a zombie.

Even now, I still have only a little amount of energy, unless soemthing spark's interest in me, then I'm like a little kid who's eaten a tubfull of blue smarties.

I don't know whether I could actally be diabetic. I eat soooo much sugar, to keep my weight up. It's not likey to be the cause of my tirednes though, becaus I didn't even eat sweets or drink fizzy pop, until I left school, and home, at age 17. Then I slowely got an addiction to sugar. But, as I say, suits me fine, because it is the only thing that keeps any meat on my bones.

I'm having a glucose tolerance test in august. So that may explain more to me, or rule out diabetes.

They did do a lot of different bloods on me, while i was in hospital. I'll see if they did the one you mentioned. They did take 5 bottles full, so it's a possiblity they could have.