Living with CF.....

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rinnie
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 10/15/2006 8:09 PM (GMT -7)   
Hey Guys,
I am currently a genetic counseling student who is looking to learn more about cystic fibrosis.  I would love to hear about everyone's experiences with the health care professions, the daily treatment, any specific struggles or just any input that you want to share.  Just to let everyone know, I want to learn more about CF and the daily struggles, so that I may better understand what it is like to live with CF and so that I may communicate more effectively with the families that I work with!  Thanks so much for all your input!
Rinnie

butterfly-babe
New Member


Date Joined Oct 2006
Total Posts : 12
   Posted 10/17/2006 2:46 AM (GMT -7)   
hey rinnie,
i am one of the ones who live with cf usally i do lead a normal life obviously i do have to attend hospital regualary but and somedays i dont feel up to doing much but usally i try to leave a healthy life as a normal teenager would and most of the time i succeed, sometimes when i do feel a little off nd think why did it have to be me but usally i am living my life like everybody else along side the hospital trips and everything else
butterfly_babe

pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 2/6/2007 2:11 PM (GMT -7)   

Hi Rinnie,

I have only been into hospital for CF three times? I don't think that any of the times were for actual CF, i've had phneumonia, osteomyletis, peri-arthritis and Sudamonus. I swim heaps and do lots of sport. I've just recently got off 7 months of antibiotics. It seems that one thing after another just keeps coming at me. I go into the hospital for a breathing test, weight, height and just general checkup every three months. The hardest part i find is how to tell people who ask what your taking tablets for! My closest friends know and they respect it and sometimes help me to remember to take my medicines...which is great! My parents always go on how lucky I am to have only had a couple of problems. I havn't done physio in a while because the swimming seems to clear out my lungs well. Well hope that this has helped.

 

 

 

 


Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 2/10/2007 9:24 AM (GMT -7)   
 
Hi,
My grand-daughter has CF.  She is one years old. 
Routine:
 
Wake up, physio, antibiotic, ketovite
bottle of milk with creon in apple sauce.
 
play, have fun,
 
physio, vitamins in 4 syringes,  eat with creon in apple
 
play, sleep,
 eat with creon in apple sauce
play, ahve fun/ walk
 
4pm  physio
 
play, have fun,
 
ketovite, anti-biotic,
eat with creon in apple sauce
 
physio, bath, cuddles, bottle of milk, creon with apple sauce.
 
sleep
 
midnight: anti-biotic
 
sleep
 
hard graft for her mum on a daily basis but very rewarding.  result:
 
happy, smiley baby,

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 2/13/2007 5:24 AM (GMT -7)   
I'm not sure what to put to be honest. So if you wanna know anymore and stuff, just ask, and email if you want. My email address should be on my profile somewhere.
 
I was diagnosed with CF at the age of 2 years old. I wasn't putting on any weight, and had fatty stools. I was diagnosed just before my brother was born, so he got tested right away, and it was found that he had CF aswell.
 
Life was ok, nice and simple and pretty healthy until age 11: These are the bugs I had from diagnosis:
 
Constant stream of Staph A until I was 11.

Then I got Psudomonas to go along with it.

Got rid of the Psudo almost straight away, spent another 3 years without it.

Spent the next 2 years (until I was 16) Still with Staph, but also being attacked a few times by Aspergillus (which got me diagnosed with ABPA), Psudomonas, Haemophilus Influenza, Stenotrophomonas maltophilia.

When I was 19, I was officially diagnosed as been colonized with psudomonas.

From being 18, all the rest of the bugs had stopped attacking, and only Psudomonas stuck around. Even my Staph had gone away.

In the last few months I've been getting Staph again.

 

I've had my fair share of hospital appointments and visits. I didn't cope well with shared care between hospitals, and much preferred it just going to an ordinary CF unit, even though it is 2 hours away. While I hate the wards in my hospital though, it's my only choice at the moment, as it's dangerous for me to do home IV's. Although for my last stay, I was totally self-medicating, which went very well.

I find living with CF hard, made harder by raised CPK levels, which is currently stood at me having some form of Muscular Dystrophy, until they get the full results from a muscle biopsy they took a while ago. I end up feeling guilty that it's not just me having to cope wth my CF, but my boyfriend too.

I'm actually currently waiting for a taxi to take me up to the hospital, as I have stomach ache. I'd usually just let it go away, but I've had it for a few months, and Paul (the boyfriend) has been so worked up about it, he's had a panic attack yesterday at work, due to stress. Meaning I now have to go have it checked out sad  

My treatment annoys me, there's far too much, it consits of:

Creon 10,000 at meal times, flucloxacillin, sertraline, salbutamol, vitamins A,D and E, Ursodeoxychloric acid, Colostin(promixin/colomycin) INeb nebuliser, domperidone, omeprazole, fresubin, seretide and physio therapy using a PEP mask.

Erm, I hope this is the sort of stuff you wanted. I wasn't sure.

I could talk about my CF and everything for ages,if I had a subject to start it on :-)

 


It's true!: Smile and the whole world smiles with you. Frown and the world turns upside down.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Allergies: Any dressing except Mepilex border. Even plasters make my skin blister. Hayfever, Tazocin, Tobromycin, Ibruprofen, Asprin, Codeine, Mirtazapine.
I have a pretty little port-a-cath on left side of chest wall

Post Edited (Darkies Gem) : 2/13/2007 5:32:37 AM (GMT-7)


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 4/27/2007 1:47 PM (GMT -7)   
Hi Vera!
Don't mind answering things at all, you have to learn somewhere eh?

I live in South Yorkshire in England, I'm 21 female with CF, and all the other annoying things in my signiture.
Yes, my name is Gemma:) My bf's username on another forum is Darkstar, which gets shortened to Darky, and I'm his little Gem (apparently).

Here are siome explanations on those words. There all different kinds of bacteria/bugs that grow on lungs.

Psuedomonas- Psuedomonas Aeruginosa is the kind of Psuedo most people with CF get at some stage. I'm colonized with it, which means rather than being able to have it and get rid of it straight away, it stays in my lungs now, I can never get rid of it. It can be supressed with nebulised colomycin/promixin/colostin
or Tobramycin. It occasionally flares up (about every 3 months in my case) and starts been problamatic, but it goes away with 2 weeks course of Intra Venus (IV) antibiotics.

Staph- Staphylococcus Aureus. Some people it doesn't effect, but then others it does quite badley. It tends not to cause me any side effects, and usually goes away with simple oral antibiotics.

Aspergillus- I believe this is actually to do with spores in the air. It tends to make itself known around spring/summer when pollen count is at it highest. It's usually treated with oral steroids. I'm allergic to it, which is known as ABPA (Allergic Bronchopulmonary Aspergillosis).

Haemophilus Influenza and Stenotrophomonas maltophilia- I've only had each of these once, they were both wquite easy for me to get rid of as i remember it. The S. Maltophilia used to be known as a type of Psuedomonas. I guess there pretty similar, as you can also become colonized with S Maltophlia.

My stomach ache's still there annoyingly. They can't work out the cause (seems to be a trend with me). They stuck me on painkillers (Nefopam and paracetamol) and also antisicknes medication (Odansatron and cyclizine). It's dulling it, and enabling me to eat, but as they still haven't found the answer to whats causing it, as soon as I stop any of those meds or miss a dose, I have trouble again.

If you need anymore info, please feel free to ask me. I don't have all the answers, but I have done a lot of research into CF, just to see what I can be expecting to come in the future.

I do have a habit of just rambling on, and not thinking about the fact, some terms may be second nature to me, but they aren't to others. If you have any other problems with understanding things I've written, just ask, I'll gladley explain as best I can.

I know with your Granddaughter, she will grow into a strong special person you can be proud of. As much of a pain as CF is, it does become second nature to take treatment, and just accept it as part of life. It also makes you view things differently.

I have rambled again I'm sorry.

Hope you and your Granddaughter are both well

Gem
XxXxX


It's true!: Smile and the whole world smiles with you. Frown and the world turns upside down.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Allergies: Any dressing except Mepilex border. Even plasters make my skin blister. Hayfever, Tazocin, Tobromycin, Ibruprofen, Asprin, Codeine, Mirtazapine.
I have a pretty little port-a-cath on left side of chest wall


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/7/2007 10:18 AM (GMT -7)   
Hey Vera!

Out of all the chest infections pwcf tend to get, Pseudomonas and Staphlococcus Aureus are the ones most people with CF tend to get. The Staphlococcus effects different people different ways. Some badley, others hardley notice they have it. Growing up both me and my brother had this continuously, as we kept passing it between each other. When I moved away from home, I've generaly stopped growing it.
Psudomonas can be caught from warm, moist areas. The worst place for this is jacuzzi's and hot tubs, they provide the perfect breeding area.
There is a theory though, that the psudomonas that people with CF get, can only be passed on through people with CF, as it adapts to live in CF lungs.
Once you get psudomonas it's hard to get rid of it. It inbeds itself at the bottom of your lungs. After 3 positive sputum samples ina row of psudo your officialy classed as been colonized. Which means it's highly unlikely you'll ever be rid.
The best thing for any person with CF, is to avoid this bug for as long as possible.

The likely hood of your grand daughter getting these, is probably pretty high. People with CF should stay away from warm moist environments and stagnant water. Also there is a general cross-infection rule of no 2 cf people should ideally meet. If they do, a distance of at least 6ft should be kept to decrease the risk of cross-infection. Plus both people should have had a regular sputum check to make sure there isn't a huge difference in the bugs there growing.

If you don't know already, a person with CF's lungs are very sticky, with thick mucous. Something to do with the dors that usually let salt into the lungs to thin mucous don't work correctly. The thick mucous creates a nice cozy breeding ground for people with CF.

Yes, me and my brother both have CF. I've always been worse with my lungs, he's always been worse with his bowels. Because I'm now colonized with psuedomonas, I don't go down to my mum's house too often. Me and my brother both try to stick to the whole 6ft away thing. It's getting harder as we get older, as I've always been big loud sister, he's always been shy. His knowledge of CF is very limited, as he relies on me to tell him stuff. This makes him panic though when the slightest thing goes wrong. He's only 2 years younger than me, but needs me there as big sis.

Even though I get a lot more chest infections than my brothe though, I still have the best lung function. We believe this is because I used to play the trumpet while growing up, and it's strengthened my lungs immensly.
I hope this helps in someway. It is very babbley, but I have a bit of a cold, so can't quite make sentences properly.

If you need anymore info feel free to ask. I really don't mind answering you, I have nothing else to do. Stops me getting too bored in the day:P

Hope your all well!
Gem
XxXxX
It's true!: Smile and the whole world smiles with you. Frown and the world turns upside down.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Allergies: Any dressing except Mepilex border. Even plasters make my skin blister. Hayfever, Tazocin, Tobromycin, Ibruprofen, Asprin, Codeine, Mirtazapine.
I have a pretty little port-a-cath on left side of chest wall


relaxation
New Member


Date Joined May 2007
Total Posts : 1
   Posted 5/18/2007 1:34 PM (GMT -7)   

Hi Everyone,

We are a market research company located in the San Francisco Bay Area and looking to get in touch with those also in the same area.  We are conducting a paid opinion discussion session with cystic fibrosis patients.  If you are interested or know of anyone who may be interested please contact us at (510) 794-2990.

Thank you.

 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 5/23/2007 8:07 AM (GMT -7)   
Hi there,

We have somewhat of an unusual story. I have a son who will be 15 this August and when he was in 3rd grade, he weighed 39lbs and we were alarmed because he just couldn't gain. We took him in to our primary care doctor and upon examining him, he told us he thought our son may have cystic fibrosis and needed to refer us to Childrens Hospital. From there he had two sweat tests, the first came back at 60, and the other at 80. After the first 1000 mutations were ran, none were found so they kept going and they found M470V, and R75Q. Further testing was done, (GI and pulmonary) and after it was all said and done, our doctor there, said he is a carrier who presents symptoms of cystic fibrosis and is an extremely unusual case.

New mutations are being discovered all of the time, and simply being a carrier doesn't mean you are always out of the woods so to speak. My son is going on 15 and he weighs 69lbs on a good day! One of his biggest issues is that his body doesn't retain the fat, it just passes right through, along with constipation, also dehydration.
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