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Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/11/2007 2:06 AM (GMT -7)   
Welcome mbrace99!
I've read your few posts and would just like too welcome you too healingwell.
I know you've said you have a lot of answers for other people, but I hope that you to can find the answers you are looking for aswell.
 
I know it's a bt of a cliche, and amongst the CF community it doesnt go down too well, but cardio vascular excercise is one of the best things for a person with CF. It helps strengthen the lungs. I'm not sure how old Jay is, so that depends on what excercise would be best, whether he would still find certain excercise, like a trampoline, fun instead of a choir. Start off with slow excercise and build up.
 
Also, I would like to say, CF, in each person is different, try not to compare your son too other people with CF. Instead recognise any achivements Jay makes with regards too his health, and celebrate them.
 
I was diagnosed with CF at 2, before that I was really poorley. When I finaly got on some proper treatment, I strated too pick up, although I think it took a few years.
 
Also, you mention your son keeps getting psuedomonas. Do you mean he is colonized with it (meaning he has it constantly, can never get rid of it) and only needs IV's when he has an exasberation of it. Or do you mean, he just keeps picking it up. If it's that he keeps picking it up, where is he picking it up from? I assume you have been told about the dnger's of cross-ifection when 2 people with CF talk, and you must try to keep a distance of 5ft indoors, 3ft outdoors, if 2 people have different infections?
 
Psudomonas grows in warm moist condtions, jacuzzi's and steamrooms are a no, if you don't want to pick it up.
I heard soemwhere that in people with CF, the bacteria has to mutate to be able too live in such sticky conditions. There are lots of different mutations/strains of Psuedomonas out there.
 
I'm 21 with CF, and supposed too have IV's every 3 months, but doctor's keep calling me up early at every month. I've lost 20% lung function in the last year, due too not been allowed to excercise because of a muscle condition. All I can do are saline neb and PEP system as physio. Any other nebs, I'm allergic too. And take oral antibiotics in between IV's when psuedomonas starts playing up again.
 
Hope you are well, and that you get the support you need from this site. I'm around most days, except when in hospital......Still got about a month of me, you lucky people! tongue
 
Hope you can find a new doctor soon!
Gem!
 
Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05


mbrace99
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/12/2007 8:21 PM (GMT -7)   

Hello Gem,

Thank you for the welcoming. My son is 8, he also was diagnosed at 2.
I believe he is colonized. Every sputum culture done, always turns up that the psuedomonas is there. I think it has gotten worse in the last 6 months. I am not able to keep him well.

He plays soccer, jumps on the trampoline, and does anything he possibly can to scare me..LOL.

He has lost 20% of his lung function in the last 6 months. He has started seeing another specialist at Riley's Children's Hospital in Indianapolis, IN.

The reason I am so scared for him is because he is on the xopenex, hypertonic saline, pulmozyme, tobi, and ciprofloxin. I just do not understand it.

In the last year he has been on Tobi and pulmozyme constantly. He has been in the hospital 2 times in the last 6 months, and if his pft's do not improve by friday, he will be placed in the hospital yet again.

He has a port cath. and a g-tube. The last 2 weeks have been very rough. I am trying to do everything I can to keep him well and active...but his cough is getting worse, he is running low grade fevers and everything hurts.

Now, I may not be an "expert" on CF...but it seems that something is very wrong....very, very wrong.

I hate it when he has to stop doing something so he can hack and cough until he throws up. I am having trouble staying positive.

I keep hearing about all the CF teenagers that die. It is a relief to talk to someone like yourself. It keeps me hopeful, and yet I am still so scared.

 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/13/2007 1:57 AM (GMT -7)   
I can understand why you are scared. I panic everytime my psuedomonas starts up, especially as each time it starts, it causes more havoc, and makes me more breathless than the last time. My current panic, is that my nails keep going blue, and I've only been off IV's for less than a month.

It must be even harder for parents, to see there child like this, and know there isn't much more they can do.
It sounds like you are really trying everything possible, and so religious with treatments. I really feel for you, as it must be so hard to not be getting any results.

I know you said your son is on Tobi, is this a rotation of one month on, one month off? Some people have been finding during the month off Tobi, they start too struggle more. Because of this some patients in the UK are having one month Tobi, one month Colomycin. They find this keeps there chest under better control.

All I can really say now, is that one of my friends were in a similar position too your son, when they were his age, and yet now he's doing even better than me. I hope this can give you a little reassurance that things can turn themselves around.

Gem x
Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05

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