hi i'm new and i've got some questions for you all :)

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berrybella
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/31/2009 4:59 PM (GMT -7)   
 i, i'm new to these boards, i left my first post last night, but decided to delete it as i've figured that one out myself. i'm wondering what kind of treatment you all do, and how much exercise and physio and what are your lung functions generally like, and how good are you at adhering to your treatment regime? i often go against my doctors advice, and i guess i'm just interested in finding out how people do who follow it exactly. i'm also interested to find out if you modify your diet at all? i think the best thing you can do when you have cf is to find a sport you love anyway, and keep playing even when you're really ill to clear your chest. how well do you get on with your doctors? and how do they react when you have questions, or a different opinion to theirs? and do you take antidepressants? hmm that's a lot of questions already! =) hope you're all keeping well
Bella smurf  

Post Edited (berrybella) : 11/4/2009 10:41:52 AM (GMT-7)


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/31/2009 7:05 PM (GMT -7)   
Hey there Bella,
I did see your post last night. Just not had chance to respond as I was viewing via my mobile phone which only had a normal number keypad not one of those new snazzy keyboards.

I'm going to get back to you in the morning, if that's ok. Been partying with it being Halloween. Got in about an hour and a half ago at 12:30am. It's now 2'o clock am!!!

Just wanted to welcome you, as I'm still awake enough for that. But bare with us, and I'll reply to your post in the morning when I'm slightly more alive and able to understand words lol.

Anyone, who can read this and reply please do!! I hate leaving people without a response. If you're left waiting till tomorrow, thankyou for your patience!

Gem xx
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio. Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 11/1/2009 3:58 AM (GMT -7)   
Phew, sorry about that, I'm here now.

Well, welcome to the forums! Sorry bout last night, I was shattered and knew I had to check forums somehow, so did but then realised I couldn't read much past first lines of text-then I lost all understanding of what was being said.

Right, so your first question was about compliance with treatment:
Well, I'm pretty compliant unless it's something that's making any extra symptoms. As an example, just recently, I've had to stop using my PEP as physio and Ineb as nebuliser. I think it's because both are sort of using a pressure system, and for whatever reason that pressure is suddenly making me nauseas. It doesn't appear to be Tobi that's doing it, but the devices themselves which is a pain. I've just got a Flutter device for physio, about 2 days ago. This uses vibrations rather than pressure and it's not making me feel sick. Not doing any nebulisers right now, as I don't have another device to try. I cannot take Colomycin as it makes my tongue swell and go numb and I go all itchy all over-so have to have Tobi as my neb med.

Generally my tablets I take them in 2 lots, morning and night, plus Creon. The Creon I try to remember to take at the start of every meal. Sometimes I forget, so take it after a few mouthfuls of food when I remember. Morning tablets, I take whenever I get up and night time meds I take whenever I go to bed. There's nothing in them that means I can't take them too close together or something, so this is how I do them. I try to set a more rigid routine though when I'm on Ciprofloxacin, and am extremely strict with IV's.

Next question:
I don't do much exercise as I have another condition in my muscles which makes it very painful and I tire really really quickly.

My lung functions are at a great level at 80+%. Dunno how, as I am always getting infections, and breathless a lot. It's not asthma as that would make my LF decline even faster. I think it's to do with playing trumpet as a kid not sure. Unfortunately it's not good when I'm struggling to breathe, coughing up thick goo, have chest pain, and the hospital won't believe I'm feeling so bad as my LF is still in 70's or 80's%.

They've done it this time-"right, we'll see you in 6 weeks", when I'm coughing up plugs of mucus and struggling to keep going at my normal pace (slowing down isn't an option for me).

I do not get on well with my doctors at all. Infact about 99% of the time, in the last 2 years, I've left the unit, got home and just cried. They do not accept different opinions, and I'm pretty much going back into a "don't care, do what you like" attitude again as I am SO sick of them and having to fight at every corner, when I'm feeling rubbish.

I take antidepressants, and I've been seeing a psychiatrist for 5 years and a counselor at college for 6 months.

OK, so onto diet now:
I eat as many high calorie things as I can. If I can't eat meals for whatever reason because I'm just not hungry, I nibble all day on crisps and chocolate. When I can eat meals, I make them good meals, with proper meat (like chicken or beef or kangaroo.....yes, I said kangaroo lol, nothing processed). I have veg of some kind and potatoes of some kind. I'm not into greasy foods, but fatty foods are good.
I'm not good with managing my salt in food, I don't like too much, so manage my salt levels with Slow-Sodium tablets in summer.

Oh yeah, and I have Creon everywhere!! In my bag, in my coat pockets......If for whatever reason I forget them, I have spare at my usual haunts, like my mum's house, my mother-in-laws house and my social club. Same with painkillers, antisickness tablets and Ventolin.

Lol, hope this has answered some of your questions!!

Gem:D
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio. Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.

Post Edited (Darkies Gem) : 11/1/2009 4:01:11 AM (GMT-7)


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 11/1/2009 10:39 AM (GMT -7)   
Haha, that's great, small world huh?

I've never been to Manchester hospital. I got to Sheffield as that is our nearest centre.

The psychiatrist was through my unit, yes. I was struggling with new problems cropping up that weren't CF related with my muscles. I couldn't look anyone in the face, I was just suddenly so depressed I just ended up hiding in the house, and never leaving it for about a year. This after previously being quite bubbly and happy.

I didn't want to talk with anyone at first it seemed silly. But, I guess it's helped and it can't hurt to give it a try.

We've just got a new psychologist on our unit, they're going to be part of the CF team I think. Lol, I'm not bothered about meeting them, I have enough people now, I'll go mad if I start speaking to anyone else. My counselor that I see is a college counselor and he is my favourite as he just lets me go with the flow. My CF unit have found out, and the other week, my consultant was quizzing me about whether I spoke about hospital matters with him. Just lied and said no. If I say yes, then they will be on the phone to him quicker than it takes me to say no. Also if I said yes, they'd have quizzed me further, and I just couldn't be bothered with it all.

My weights always jumping about, I hate it, it's like somedays I'll be a size 10, then other days I won't fit into anything less than a 16. I end up having this huge paranoia about my weight though-I think the hospital themselves have actually caused that though, rather than it actually being a problem-as regardless of weight I am, I'm either too thin, or too fat. I'm never just right.

Brazil nut milk sounds yummy, and must be very full of nutrients. When I want to really gain weight-I just have Fresubins and Skandishakes. I can never be bothered with making stuff lol.

Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio. Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.


berrybella
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 11/1/2009 3:07 PM (GMT -7)   
it is a small world :) you're lucky to not get underweight that often, i'm constantly struggling with it. i know what you mean about never being happy with your weight and yeh i blame the docs too! always weighing us, always judging ;) i'm glad to hear you're happier these days, i get depressed sometimes too. never found a great counsellor, but fortunate to have a very patient best friend, who listens to everything :) why do you think your hospital would be so concerned about you talking about your hospital experiences? is it because you've had problems and they'd want to talk to your counsellor to try and understand you better? yeh brazil nut milk is good, i've been mixing it with carrot juice (for vitamin a), and i've had a marathon session of sushi making today too :) take care
Bella

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 11/2/2009 4:40 AM (GMT -7)   
Ah, I think it's coz I can be so negative about them........But, if they wanted too learn about whats going on, then all they had to do was sit quietly and view another set of forums I used too use. Instead, they used too watch and were always questioning me-even printing my posts off too "tell me off" in clinic. I was really unhappy with my care at the time, and was staying in a really dirty hospital with nurses constantly getting my meds wrong. Even now, I know when they've been watching, as they know things that I haven't told them. So, that's probably what it is, they've lost that insight, now they'll want another.

I did have a CF nurse I used to email regularly. If anything was majorly bothering me, she had permission to show those emails too the CF team. But, they've said I shouldn't be emailing her, because of the whole professional thing.

They keep questioning why I'm only seeing my psychiatrist once every 3 months too. It's kind of like they really don't want me talking to anyone but them, but if that is the case, then they should arrange with my psych to see me more often, as I need to talk to someone, and it needs to be someone who will remember things and more importantly won't judge me, just listen and help. I have some amazing internet friends that I speak too aswell, who offer me some great advice and lots of love and support.

Bella, that all sounds so healthy what you're making!! I will have too try it!!

Take care of yourself
Gem:)
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio. Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.

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