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Posted 5/13/2007 9:04 AM (GMT -8)
Went to my CF unit the other day.

I've got 2 weeks to get my Lung Function back up by about 10%, or there looking at giving me IV's again.

I seem to either have a viral or bacterial infection, or possibly both combined. They reckon I do also have a touch of ABPA thrown in. Waiting till next week to decide on how good steroids will be for my muscular dystrophy thing. Hope I can go on them, as then hopefully I'll start putting back on the weight I keep losing.

Just to add to my worry, they've also started me on Tobi nebuliser. Not only does it make me want to hurl, and give me a sore throat and runny nose. It also decreases my lung function by another 10%. So, right now, I'm more breathless than  usual, as I'm runnng on 20% less lung funcion than usual.

They've also started be on serevent inhalor, and got rid of my seretide, as I was useless at taking it. They started me on hayfever tablets and Cirpofloxacin oral antibiotic.

I'm so annoyed, as they only had me in about a month ago for IV's and they sent me home after 8 days because there weren't enough beds. It's probably the 8 days worth of antibiotics that's helped the infection along in the first place. IV's knock my immune system down for the first 7 days, but then I start to pick up and am brilliant by the end of a full 2 weeks course.

Just to really take the biscuit and rub it in. I currently can't go up to my mum's as my sister has chicken pox. Which I don't want to risk when I seem to be getting every cold and infection under the sun.

Really wound up at my body again, it seems to be pretty useless as of late. With the excercise ban I've got going on, I'm weakning more by the week.

I would just like to place a prescription, for a huge dose of normality please, with a touch of sanity thrown in, and maybe a cute doctor;).

Hope everyone else is doing well, and not getting TOO confused with the silly weather if you live in England.

Posted 5/14/2007 11:43 AM (GMT -8)

Darkies gem, hope you get your pfts up and you start to feel better.

We have had one of the wettest springs here in Oklahoma this year.  And when it gets hot, it gets hot, something we are not looking forward to!

Take care

Posted 5/15/2007 9:59 AM (GMT -8)
Hi darkies gem and every body else with cf ,personally i dont [most probably]have cf my daughter who is two years old now was diagnosed right after she was born cause well she was very sick my son who is barely 5 months old has also been diagnosed ,i would like to ask all of you out there who have cf themself or there kids  are you guys as hunger less as my daughter she never seems to get hungry and i have to force her literally grab her and scare her to death and only then she will eat and she is well she also has pseudomonas and i am giving her tobramycin these days also since diagnosed and started treatment my son is also loosing appetite i give my daughter omeprazole twice daily and 30,000 creon with every meal

kzmom

Posted 5/15/2007 12:57 PM (GMT -8)
Sandra and Vera thanks for your replies. Actually somehow feeling worse today, as picked up another cold which suddenly started this afternoon. My immun esystem must have taken a major battering at some point. I'm really interested now to see the results of my sputum (horrible word) sample and blood test to check my infection markers. I have a feeling there's something there not seeing. Hopefully they'l open there eyes soon and spot something.

Hi Kzmom!

I never had an eating problem when I was younger, although my brother did. Rather than eat, he used to make himself throw up if my mum tried to force feed him. All he would eat willingly was chocolate and would drink loads of Fresubin nutritional drinks. When he was about 7, he wouldn't eat his dinner, but somehow managed to scoof through a full huge tin of quality streets that he'd snuck to his room.

He was the one with the bowl blockage problems, whereas I suffered a lot more with my chest. Strangely though, I've always been on more Creon than him. Were both on Creon 10,000 as both me and my brother noticed bowl problems when we tried to go up to any of the higher dose tablets.

The Omeprazole is good as it usually soaks up the acid, making breathing easier. I always have problems with my eating if I have the slightest breathing trouble.

I am especially havng problems now with my eating. To make sure I keep my weight up, I tend to only cook and eat stuff I fancy if I'm not feeling hungry. In the past doing this, I've managed to get through 4 bowls of apple crumble and custard, when everything else i tried to eat was making me naseuas and full.
If I am struggling with my weight. Everything I do force down, has a LOT of calories to it. I add full-fat cheese to most measl. Cream cheese and real butter along with grated cheese and beans on jacket potatoes.

I count on my nutritional drinks to give me my main source of nutrition. That way, my food can just be high calorie without me also having to worry about the general nutritional values.

I add sugar to absolutely any dessert and have 6 in my coffee. MY dietician has informed me that my sweet tooth is the best thing for me, as sugar stores as more fat than eating the same amount of fat.

Me personaly, I can't eat if I'm not hungry, or I end up feeling nauseas. If I try force fed when naseuas I end up being sick, and then I struggle even more over the next couple of days.
I have been grilled over my eating methods before, but as I say it does work for me, and now I'm using these methods. I haven't actually lost weight in a couple of months, it's staying exactly the same, rather than plummeting like it was doing.


Hope this helps. I think I am actually going to go pass out somewhere. I've not been near anyone with a cold today, yet since this afternoon I've been full of one. Can'thave my nebuliser, as struggling breathing as it is. Going to please the hospital no end I'm sure, but ah well. There not the ones who have to talk more tablets to counteract the effects of the neb.

Oh, there was a trick to being able to tell what it's like to breath through CF lungs. It was hold your nose and breathe through a normal sized drinking straw for 1 minute. I actualy physically can't do it. Probably because my lungs are bad to begn with:P

PS: There's a post here, with some of my recipes on it:
https://www.healingwell.com/community/default.aspx?f=18&m=782387

Hope your all well:)
Posted 5/15/2007 1:41 PM (GMT -8)

hi gemma,

             Thank you so much for ur words it is so nice to hear from a person who has seen it on himself or some one close ,my daughter was 4 months old when diagnosed she had pseudomonas h influenza and had never gained weight since birth they started her with an NG tube which well scared the hell out of me they told me if i could feed her that much ok otherwise she had to go on an ng and i didnt want mu daughter to grow up with a tube hanging from her nose well since then i started tyo force feed her as soon as her treatment began she never wanted to eat slowly slowly she has now learnt just like ur brother to vomit just at the mere mentioning of food or the sight of it how did ur brother get out of it and unlike ur brother she doesnt even like candies cookies anything i kept her hungry for a whole day the only thing she likes to drink plain water is all she drank that day i dont know what to do and now when i think that i have to raise another kid just like this is so difficult i really want to know how ur mom managed both of u and how she got ur brother out of that habbit

  I really wish that your doctors come to know whats bothering you deep in there i know how difficult it is when u know something is wrong and they cant figure it out ,and yes at hospital with iv's do urs come out very often too and do your doctors know which type of mutation u have cause my kids they still dont and r now trying to do gene mapping

 thank you so much and good luck

Posted 5/15/2007 8:49 PM (GMT -8)

Hey, Gem!

Sorry to hear you're not feeling well, especially with this new mystery cold you've developed.  I hope they figure out what's wrong - and quick!  well, I just hope you'll feel better soon.  Good luck with everything. :)

Posted 5/16/2007 6:45 AM (GMT -8)
KZmom:
There's a girl out there with CF, who went through all her early years on NG feeding. It didn't seem to effect her to badley. I personally have never had to have it. So can't go from personal experiance on even what it's like to have it.
Anyway, this girl made a video of her growing up with CF watch it to the end it's happy:):
http://youtube.com/watch?v=byhoFa1YU4Y

You will notice that every picture is a happy one, even with the eating problems, she still grew up strong. I don't think she'd be that strong if she'd have not had the ng feeding as a child.

If your daughter does have to have the ng feeding, it's going to be better for her in the long run. As the less you weigh the more chance you have of picking up infections, and the more infections attack, the harder it gets to put on weight, so it turns into a nasty cycle.

IV's I have once every 2-6 months. Usually 6 monthly, but I think my Psuedomonas is getting a bit stronger than it used to be.
I have a port-a-cath for my IV's. In my eyes, it's the best thing ever. Even though the scar is still visible (although it shouldn't be, I just heal wierdly). The trauma of having IV's is cut down to very minimal. The worst part is the amount of time they take, and the fact I always cut myself on heplock bottles and stab my finger with needles when drawing stuff up (I'm far too clumsy:P)

It sounds like your having a rough time coping with everything. I completely understand why you are, and all I can say, is it should get easier along the way. Your children will start to accept and undestand things even better than you. And things like medication and eating will become second nature.
I hope things do become easier. If you ever need help with anything, just yell, I'll do my best to help. I'm actually going to ask my mum how she coped with us as children. But can't go there at the minute due to my ickle sister having chicken pox. And she can never understand me over the phone.

Deirdre:
Mystery cold is annoying me muchly. I've gone through a full box of hospital tissues since yesterday afternoon. And there not small boxes. Just been sat here watching series 3 of Scrubs. Have watched 3 hours worth so far. It's soooooo good:)
My next hospital appointment is now on the 23rd. They confirmed it this morning. I talked them into letting me visit after my psychiatric appointment in the same hospital.;)

How are you doing btw?
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