Questions about CF

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KZMOM
New Member


Date Joined May 2007
Total Posts : 5
   Posted 5/16/2007 9:38 AM (GMT -7)   
HI GEMMA
              no no she doesnt need the ng again infact she is now above the 95th percentile but during the process of me getting her here she has never learnt to eat on her own ,thanks for the link i really liked it i hope your sister recovers from chicken pox and then you can visit ur mum and ask her all the million questions that i have [it appears to me that she was a very brave woman to cope with two kids with cf .cause well i am still having a lot of trouble adjusting.good luck with the flu i know whenever my daughter gets it its horrible so i hope urs is not that bad and u recover soon thankyou so much its the first time i am talking to some one with it usually it is with doctors and its not the same thing one more thing did ur mum let her friends and family know about ur illness since starting and how did she break it to both of you or did u guys just knew
thanx
i really wish i could come to england and meet you
dia

Post Edited By Moderator (Darkies Gem) : 5/18/2007 4:34:10 AM (GMT-6)


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/16/2007 10:22 AM (GMT -7)   
You coming to England would be cool, if you could get here. We have a guest room set up wth bunk beds (and a Mega Drive:D) We have a lot of friends stay over from the net. Furthest so far is Scotland.

I think she was a brave woman aswell. As much as she annoys me at times, as she can still be too over-protective. She's been the only constant figure in both my brothers and mine lives. And I think she did a brilliant job, as she was also a single parent.

I think everyone knew about my CF from the off. Because I was quite ill, everyone wanted to know the news as too why I was so ill.
I think I did just somehow work it all out. We didn't really have a talk about it or anything. Not until I was about 13, and found out the life expectancy. It scared me a lot. Although I can cope wih that now, as I have friends in there 40-60's with CF who are still doing really well.


My temp has risen a lot, and I am definately starting to think flu not cold, as this is worse than any cold I've ever had.
Think I might just email my CF nurse, make sure it's nothing to get panicked over. I get told off if I leave stuff too long without telling them.
Co-moderator in the: Cystic Fibrosis Forums
 
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, Colomycin, Ibruprofen, Asprin, Codeine.
 


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/16/2007 10:32 AM (GMT -7)   
The first post on my friends blog, shows another perspective from growing up:
http://pinkandsmiley.blogspot.com/

Sorry for putting all these links on you, but hope they do turn out to be of some use.

 

 

PS: Sorry for editing your post, just wanted to put a title to it, as then more people might read it and you might get some different views and opinions.


Co-moderator in the: Cystic Fibrosis Forums
 
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, Colomycin, Ibruprofen, Asprin, Codeine.
 

Post Edited (Darkies Gem) : 5/18/2007 4:46:13 AM (GMT-6)


KZMOM
New Member


Date Joined May 2007
Total Posts : 5
   Posted 5/19/2007 4:24 PM (GMT -7)   
hi all and especially gemma[a true gem]
by now ive watched those pictures like about a million times and it is so refreshing to see that there are other people with this disease who are as normal as any body ,just curious is that you in the youtube video i mean is is iot about you ?and u dont need to be sorry at all for putting a title there actually i thought i had just replied didnt know it would appear seperately ,how is your cold going ?feeling better ?i just wanted to ask you one more thing while you were growing up did you feel any hinderance or anything with school and other stuff and yes if you get a lung transplant does cf affect the new lungs too or is it cured after a transplant ?
And i was just reading another post girls have no problems having kids but what about guys cause im worried for my son
and yes i wish i can come to you in england i stop on heathrow airport london almost every 6 months whenever i go to visit my parents in usa ,but believe me if i do come your record will be really set high for the distance you wont believe where i come from cause we gave the doctors too a huge shock when they found out cf in my daughter cause i think it usually hasppens in caucasions right?
can u guess where i could be from?

dia[k&z's mom]

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/20/2007 4:08 AM (GMT -7)   
Hiya Dia:)

I agree the pictures are very very refreshing. I have a habit of going through a lot of the CF video's when I'm sad.
I'm not the person who did the video, no. The person he did is also called Gemma though.
She did another Youtube video, that had a really good idea behind it. The idea was, you sent in a picture of you. For every picture you sent, you also had to send a pound. The pictures got put on a slideshow, to show a happy CF world type thing.
I'm on there aswell somewhere.

Th video's here, She's stopped adding photo's to it now though:
http://youtube.com/watch?v=to8Oq81OKiI
You may be able to spot me if you watch it. I'm lucking very red white and piratey sat infront of a tent:P

My cold is not going well. I'm still really bunged up and tired and breathless. Hardley eating, as I start choking when I try, so on 3 skandishakes a day, as i can just sip them. My weight is going up because of this though, which is good. I think it's because they take a definate amount of creon to digest, so I manage not to have too little, like sometimes I do when I misjudge a meal.

I'm guessing instead of clicking post reply, you clicked on new topic instead. Nothing to worry about though, as I've done it myself plenty of times before:P

Yes, males with CF do have a harder time on the having kids front. It's something to do with pesky mucous blocking tubes and stopping things from leaving I think. Most males with CF have a normal sperm production, but they just can't get through the mucousy barrier. A lot find that having kids the normal way is hard. And can have some sort of sperm retrieval thingy.

I'm not very good on my Geography at all. Infact, I failed the subject very very misrably. So I'm going to take a guess at Africa. Take no offence if I'm wrong. It's just my geography skils and from what you said, making the answer somehow. Either that or Austrailia, as that's all the way on the other side of the world.

Your right about the Caucasions thing. There has been a lot of theories into how CF came about. Most of them are Western and Caucasion I believe.

Oh, and growing up and school, almost missed that bit:
For some reason all of the people in my year and classes and even in other years. Had no problem with me taking my meds in class or my meds in general. I had a couple of friends who stuck to me like glue when I had my tablets and things, and when in primary school I had friends who'd help me split my tablets into a yoghurt.

The people who seemed to have the problem with it all, were the adults. They made sure I went to them on my breaks to have my tablets. Dinner times were horrible in secondary school for both meand my brother. We had to chose out the most fatty things, so was always asking the fat content, and what sort of milk was used in the puddings today. The diner server's got used to us after a couple of years, but dinner adies would not accept that me and my brother were having our creon with our meals , whether they liked it or not. about once a month the argment cropped up, I'm sure it must have been PMT week for the whole of the dinner ladies or soemthing.

They had been sent letters and had meetings with my CF nurse many a time. But even as I got to the last year. They still had a problem with it. Luckily I wouldn't back down, and went ape at my brother. As he felt so intimidated and was sick of the scene the dinner ladies caused. He just gave up the fight, and didn't bother having any of his meds throughout the days at school. Me being the stubborn cookie that I am, just wouldn't let them win like that. It was my health not there's they were playing with.

Another problem I had in school was that I had a lot of temperature flunctuations, and was on daily laxatives for years.
I had notes stuck into my daily planner, so during lessons, I could easily escape to the toilet, have energy drinks or chocolate and carry my mobile phone in my bag during lessons.

I was covered for everything except the cold.

I wouldn't have a school jumper, they weren't in anyway cool, you got laughed at if you wore one, plus they cost £14 a jumper, as you could only have the ones they sold. The amount I would wear one was so minimal, it seemed like a huge waste of money. Along with this, I could only have short sleeved shirts in summer, as I had to be as cool as possible when it was warm. As I started to dehydrate at the drop of a hat.

A few teachers had problems with this, when I was cold though. The trouble is, it could be a boiling hot day, and I could be tired, and then I'd suddenly be absolutely freezing and shivering. My skin all over was cold, and if they took my temperature, it also showed to be low. Even if it was the hottest day of the year.
Now I've explained why I didn't have a school jumper. But I always had a coat on me, as it was cold in the morning walking to school.
I would refuse to take my coat off if I was cold. The headteacher wasn't happy about this, but he agreed it seemed the only answer. Plus when I was cold the shivering distracted me so much, I may aswell have been sent home, as I wasn't able to take any information in, never mind write things down.

A couple of teachers really really hated this though, and would start up a right fuss when I woldn't take my coat off. Generally if I knew I was cold, I wouldn't even try and take my coat off when I got in the classroom, as it only made me shiver harder. The amount of times the tacher just went strawberry red, and shouted at me to get to the medical office then, was unbelievable. Luckily the school nurse was used to this, and had a blanket and hot water bottle in a cupboard for me. I slept the lesson out, and was usually ok to go to the next one.

Things have changed nowadays though, my sister goes to the same school, with a lot of the same teachers. There a lot better than they were. She doesn't have CF, so obviously doesn't need the same things. But she does have the same temperature control problems as me, and the teachers are a LOT different about it.


Bah, I've babbled on again:P

I love typing when I have a sore throat:P
Co-moderator in the: Cystic Fibrosis Forums
 
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, Colomycin, Ibruprofen, Asprin, Codeine.
 


KZMOM
New Member


Date Joined May 2007
Total Posts : 5
   Posted 5/20/2007 12:44 PM (GMT -7)   
HEY GEMMA
nice to read all of this i think ive watched that video too but will look again to find you well u will be surprised to know where i come from no its not africa or australia i am from Pakistan [just incase u dont know its next to India]my real name is sadia,dia is my nickname and my kids are khadija and zaid i lived in usa before i got married and now i live in qatar its next to saudi arabia the doctors had a huge shock when they diagnosed khadija cause we r not supposed to have it but well my cousin died of it 8 years ago when he was 16 i never knew what disease he had when he died i asked her sister young as she was she told me its called 60 fabulous i was amazed at the name cause i was a med student back then u wont believe it the same hospital he died in diagnosed my daughter and it was later they found our link to him we decided not to tell our family about it only mine and my husbands parents know about khadija and about zaid well no body knows about him and these days when i cant talk tyo any one u were like a rescuer for me i dont know why im telling u this but its just i dont know

wish me luck in facing this disease with both my kids

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 5/21/2007 2:11 AM (GMT -7)   
Hi Dia!!

I wish you all the luck in the world:)

It's brilliant you felt comfortable enough to tell me all of this. I like it when I know I had a good impact on someone and that I have been able to help them.

It's weird, other than me and my brother there is no history of CF at all in our family. We loved having friends at the CF clinic. Because we weren't really told a lot by our parents. We found out a lot of things.

Things like, it's normal for creon not to agree with your stomach if you have too much or too many, and that it's quite normal in CF to be coughing up copious amounts of mucous everyday. Our mum used to have a fit everytime we had to spit stuff up, as she was convinced it was infection and went crazy about it. We both learnt to swallow stuff from then, as we were sick of getting rushed through a+e at every little cough.

I find being able to talk things out with people helps tremendously. It's one thing I love about the net, as I'm always maing new friends with new experiances, and new ways of coping.

I hope Khadija and Zaid grow up happy and as well as can be:)


Co-moderator in the: Cystic Fibrosis Forums
 
Life, it's one day wih you, then six days against you.
 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, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath on chest wall since 11th Nov 05

Post Edited (Darkies Gem) : 5/21/2007 3:34:27 AM (GMT-6)

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