live your life and smile

Thursday, March 22, 2007

Thursday Thirteen # 14





Thirteen Things about Jill
On Valentine's day, we had the news that my oldest niece had cystic fibrosis. It's been a while since they were trying to diagnose what she had. It was a bad new, but at least now, she can get a proper treatment, and she is getting better, she even hyper and her old self again!!/ LA journée de la Saint-Valentin, nous avons eu la nouvelle que la plus vieille de mes nièces était atteinte de fibrose kystique. On essaiat depuis un bon moment de diagnotiquer ce qu'elle avait. C'était une mauvaise nouvelle, mais maintenant elle peut avoir le traitement approprié, et elle commence à se sentir meilleur et commence à même être hyper... Elle est à nouveau elle même!!


13 things about Cystic fibrosis/13 choses à propos de la fibrose kystique
Symptoms /Symptomes
1.An accumulation of mucus/Une accumulation de mucus
2.difficulty breathing /difficulté à respirer;
3. constant cough which expels thick mucus;/ toux persistante avec expectorations de mucus épais
4.excessive appetite, with weight loss , she is tiny, but she started to gain back weight/appétit extrême combiné à une perte de poids, elle est maigre, mais elle a commencé à reprendre du poids
5.bowel disturbances/troubles intestinaux;
6.skin which tastes salty, sometimes, we only kiss her, and had a salty taste on our lips!/peau au goût salé, des fois, on lui donnait juste un bec, et nous avions un goût salé sur nos lèvres
7.repeated or prolonged bouts of pneumonia/poussées répétitives de pneumonie de longue durée;
8.failure to thrive /retard de croissance.
Suivi médical
9.tapping or "clapping" the chest and the back vigorously(percussion) or PEP (positive expiratory pressure) Mask Therapy to help loosen the mucus which clogs the lungs/ des tapes ou « claquades » vigoureuses sur la poitrine et le dos (percussion) ou la thérapie par masque PEP (pression expiratoire positive) pour aider à dégager le mucus qui bouche les poumons
10.taking pancreatic enzymes with all meals, to aid digestion Since she cannot digest fat, she will need to take some all of her life. That explain, too why she was so skinny /des enzymes pancréatiques, prises à chaque repas pour faciliter la digestion Puisqu'elle ne peut pas digérer les lipides, elle va devoir en prendre toute sa vie. Et ça explique aussi pourquoi elle était si maigre
11.taking nutritional supplements and vitamins to promote good nutrition Because she sweat a lot, she need extra help to keep them balance / des suppléments nutritifs et des vitamines pour améliorer la nutrition Car elle sue plus que la normale, elle doit prendre ces suppléments pour sauvegarder la balance de ces choses
12.taking antibiotics in pill, intravenous (IV), and or inhaled forms, to ease congestion and protect against and fight lung infection the poor thing has to stay an extra 2 weeks at IWK because she cautgh a virus /des antibiotiques sous forme de comprimés, en aérosol ou par voie intraveineuse (i.v.) pour soulager la congestion et éviter ou combattre l'infection pulmonaire La pauvre a du rester deux semaines de plus à IWK car elle a attrapé un virus
Autres faits
13.In 1960, when the CCFF was founded, a child born with cystic fibrosis rarely lived four years. Today, half of all Canadians with CF are expected to live into their late-thirties and beyond. /En 1960, année où la FCFK a été fondée, un enfant atteint de la fibrose kystique vivait rarement quatre ans. Aujourd'hui, on s'attend à ce que la moitié des canadiens FK dépassent la fin de la trentaine
14.More than 47% of all Canadians with CF are over the age of 18 years. These men and women are pursuing post-secondary education, careers and many are having families of their own; a tremendous accomplishment, but not enough /Plus de 47 % de tous les Canadiens et Canadiennes FK ont 18 ans ou plus. Ces hommes et ces femmes poursuivent des études postsecondaires et des carrières, et un grand nombre fondent des familles. Il s'agit d'une réalisation importante, mais ce n'est pas assez.

15.As of 2002, the median age of survival of Canadians with cystic fibrosis is 37 years of age. The median age of survival is the age beyond which half of the CF population can be expected to live. /Depuis 2002, l’âge médian de survie des Canadiens atteints de fibro-kystique est supérieur à 37 ans. L’âge médian de survie est l’âge que l’on s’attend voir la moitié de la population atteindre.

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16 Comments:

Blogger Susan Helene Gottfried said...

Oh, man. What a brutal disease. I wish I could help somehow!

Yep, you got to me before I could get to you this week. Race is on for next week, though!

Have a good one, Jill. See ya soon.

6:46 PM  
Blogger Janet said...

I'm sorry to hear about this diagnosis, I hope your niece has a long happy life!

6:54 PM  
Anonymous christine said...

Sounds like your niece will get all the right medical attention now and she has a loving family that will make sure she lives life to the fullest.

12:02 AM  
Anonymous Damozel said...

How sad...here's hoping she beats all the odds and lives a long and full life.

4:35 AM  
Blogger Jill said...

Now, the people with CF get a really decent life. I knew a guy who was like 30, and live simplely, and even were in a band... And she is only 4, and they have done all lot of discovery in helping them getting a better life!!

Susan, I was just plain lucky this week... I know you probably be the one who will visit me first next week!!

Janet, she is back to her happy self again, all smile and energy!!

Christine, the right treatment has done wonders for her!!! Her cheeks are pink, it has been an eternity since they were pink!!

The odds are getting better and better every year, damozel...

12:41 PM  
Blogger Shroom Monkey said...

Goodness I am sorry sweetie...

3:45 PM  
Anonymous Lene said...

I am sorry about your niece's diagnosis. I hope your family finds ways to cope. I agree - at least you all know what is going on so the proper treatment can be utilized.

4:23 PM  
Blogger spyscribbler said...

Oh, wow. Awww, she looks like such a sweetheart, too. I wish her the very, very, very best.

Give her an extra squeeze from us, for being such a strong girl! That's good news; she has a long time for them to find a cure, too.
Happy TT!

5:18 PM  
Blogger Di said...

My thoughts and prayers are with your niece...I know when I recently posted about my friend's child with ulcerative colitis who was in the hospital for several weeks, the blog world was tremendously supportive!

7:44 PM  
Anonymous Indigo said...

What a terrible disease. :-(

I came from Tendrils today. First time here, hello!

7:46 PM  
Blogger Nancy J. Bond said...

This list was very informative. I'm so sorry about your niece's diagnosis. (Nancy in NS)

7:48 PM  
Anonymous she said...

I'm sorry about your niece's diganosis, but as you know, they've really come a long way in CF research in the past 30 years.

A very close childhood friend was an IWK poster child for CF about 15 years ago.

8:55 PM  
Anonymous jenny said...

1st time to hear about this...thanks for sharing all of the symptoms! i hope she will get better soon!

thanks also for visiting my site, and about the blood soup, yes they do serve it in other countries & from where I come from, it is also a popular cuisine ;-)

4:15 AM  
Blogger Tendrils said...

What terrible news! Your family is in my thoughts and prayers! But, you are right, it's much easier to treat something you know about!

1:05 PM  
Blogger Laurence said...

Je pense beaucoup à ta nièce et je suis sûre qu'elle sera entourée comme il le faut avec une tante comme toi !
Fais-lui de très gros bisous pour moi ! Je lui souhaite tout le bonheur du monde !

3:52 PM  
Blogger Jill said...

Shroom, tanx!

Lene, seeing her having so much energy help up coping big time.

spyscribbler, I'll will give her one!

Di, thanx

indigo, it's sounds really bad, but they can have an almost normal life!!

Nancy, I'm very proud that it could help you understand more that disease

she, one of the guy I knew did the commercial one "If you knew a person with CF..."

Jenny, the blood pudding is probably a popular cuisine dish for us too...

Tendrils, she is felling better eveytime I see her...

Laurence, je lui ferais un bisous pour toi, si je peux l'attraper, elle a beaucoup d'énergie pour taquiner maintenant!!

2:38 PM  

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