CF Progression

[anonymous]

I've read all your comments on the last topic I posted. Some got me down a bit, but Luke's comments kept me going and lifted my spirits. I don't look at life with rose coloured glasses and don't like people sugar coating it but sometimes it is nice for some1 like Luke to be so positive and strong. I think that it is the right attitude to have.

You've also gotta realise that I am still getting my head around my daughter having CF, hey I've only known for 2 years and things are still a bit raw.

Take it easy.

Charlotte<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[littlemisssilly]

Hi Charlotte,

You asked a question that any caring parent would ask, in fact, I'm sure my parents still have that question in the back of their minds even though I am soon to be 30. It's a shame that your question was met with some insensitive remarks.

I, like everyone else on this forum, know very well the statistics of CF but going along with what Luke said, that shouldn't excuse people from showing compassion, good manners and some tact, especially to a parent with a newly diagnosed child. Even at my age I still see my parents being hurt and upset by other peoples' seemingly 'innocent' remarks about CF.

Only advice I can give you Charlotte is that each case of CF is different, a bit like a lottery unfortunately. I am soon to be 30, have two degrees and still have maintianed reasonable lung function. Does CF affect me? of course it does, I am tired, frequently on antibiotics and have had the big bad Cepacia for over eight years now. But again, the positives being that the antibiotics are still effective and that my lung function still remains stable and does not fluctuate, it just obviously takes extra effort to maintain it as the years go on.

Your daughter is lucky enough to be born into an era where medicine is progressing fast, perhaps not towards a cure just yet, but certainly amazing milestones have been made at ameliorating some of the symtoms and progression of CF. CF is a struggle and I certainly wouldn't wish it on anyone but given your daughters age, the odds are in your favour.

 

[anonymous]

Thanks for that. I do want answers when I ask questions, of course I do, even though I don't want to hear some of the answers, but just answered in a sensitive manner as I am a very sensitive person.

Take care.

Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

Charlotte-
I can relate to you. I have a 9 yr old boy wcf. I started coming on this site only in February - don't know why I waited so long - a bit of denial - maybe?? But it hit me like a ton of brick when I started reading the forums. I guess a little bit of reality hit me - I almost became a bit depressed. My son has been relatively healthy - no hospitalizations since diagnosed at 6 mos. He has had polyps removed 3 times & antibiotics once and awhile. Has had perfect attendence in school the last 2 years. So I guess I thought (in my mind) that albuteral treatments and percussion the rest of his life - we can handle that. Always in the back of my mind I knew things could get worse as he gets older - but never dwelled on it. But I always keep in my mind that every case is different and things do keep changing. I am glad that I do have more knowledge now and know some things to look for now. Anyway I just wanted to say good luck to you - you're not alone! My son is so active & eats well - I just hope we keep on the right track!!

Mother of 9 yr old w cf

 

[nikkig]

Charlotte-
I know how you feel about hearing all this new info...I guess some people just are not compasionate...my niece was diagnosed 2 months ago...wow what a shock it was to all of us...I started coming on here to find out information about cf...I didn't know I could talk to people. I am finding out more info from talking then researching...some good some bad news. I sometimes read the stories and cry...felling bad for people and my niece...It all comes to reality when you read and start thinking...what are my kids life going to be like or in my case niece, what are they going to go through...it's tough but I guess that's why were all here to help eachother deal and learn from others. God Bless and if you need to talk or would like to share stories I will be here.

Nicole~23 w/o cf
Alexis~14 months w/cf

 

[anonymous]

Here's my 2 cents- there is a group of people on this forum who will give honest, informative, compassionate answers. They are not sugar -coaters- they treat people with respect. A few names who come to mind are Luke, Risa, Diane, Dave and Jazzysmom (there are more but these guys come to mind first). Then there is another group ( I chose not to name them) who loves drama, loves to argue, need their egos stroked, loves to say they are leaving the forum so people will beg them to stay.

 

[anonymous]

Charlotte,
I feel real bad for you. I really do. And I just wish there was something I could do or say that would help you be able to spend more time enjoying your kid than worrying about her.

I can understand why you might think that knowing about the progression might make you more at ease. But I'm not sure that's true. As we've shared- the progression is so variable and looking for signs is just encouraging you to be waiting for the other shoe to drop.

I think of my late mother-in-law who was told her son (my late husband) would probably never live long enough to get married and have kids - how it would be a miracle if he made it till 35 and my heart still breaks for her. She never got over that trauma. Until her dying day (when she was in her late 70s and he in his 50s and still well enough to sit by her bedside) she always looked at him as tho' he might drop dead any moment. The facts that he had gotten married (3 times by her death), had 3 beautiful children, was a wonderful athlete (thought about minor league baseball), and a fantastic career -- none of these things ever took precedence in her mind to the thought she had a "dying child" -- and that by his 50s he was not as well as other people's 50-year old sons.

So I would love to offer you whatever you need to not go thru what she went thru. I would love to offer you whatever you need to be able to enjoy your kid and your kid's life without feeling like the angel of death is hovering over her every moment.

I don't know what it is that you need exactly - but I am feeling strongly that knowing about the progression of CF is not it. The promise of an cure real soon would be closer, but I can't offer that either.

So I'm thinking that talking with other parents and finding out what they do to stay in the present with their kid and not worry about the future is probably your best bet. Again, my late husband was way past mild when I met him, so there was no way I could deny that CF came with progression, so I'm not sure what I did would be of any help to you. But (and here is blunt or earthy) the saying I used to stay in the present was "If you keep one foot in yesterday, and another in tomorrow, you'll miss all over today." So not being one to want to piss on my or his today's, I just focused on the present. Also, believing the old saying of "don't trouble trouble, till trouble troubles you", we really (I believe) used a healthy denial to get on. I think healthy denial is an underrated coping mechanism. I recommend it.

Enjoy your day, Charlotte. We are having a sunny one finally. I'm fighting off a cold (unsuccessfully to some point - I'm running a slight fever) so I'm home rather than at work. With any luck, I'll be able to sit outside a bit tho', walk barefoot in the grass, and watch the birds. Maybe you and your daughter could enjoy that today today too.

Keeping you in my heart,
LisaV

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Then there is another group ( I chose not to name them) who loves drama, loves to argue, need their egos stroked, loves to say they are leaving the forum so people will beg them to stay.</end quote></div>

<i>You can choose not to name them, but I'm sure they'd appreciate being named. In other words, if you mean me, just say so. What is everyone so afraid of telling me off for? Everyone needs to be told off now and again.</i>

Anyway, back to Charlotte. Let me throw this at you:

I was born in 1984. They didn't even specify the CF gene until 1989. This was like back in the dark ages of CF. Hahaha. When I was born in 1984, my parents were told I'd probably not see past 18, and if I did, it wouldn't be much longer. I'm 22 now (SO THERE!), and still have 65-70% lung function, give or take. And in my 22 years, the life expectancy has gone from 18 to 35. It's just about doubled. It changed so fast, especially after they discovered the CF gene. You daughter, I believe, is still fairly young (I mean... under 5 or so). That gives her WORLDS of advantages over us old CF farts (hah get it... farts... <img src="i/expressions/face-icon-small-tongue.gif" border="0">). I didn't start any neb until I was 9 years old. That's 9 years of unchecked untreated damage. That makes a fairly big difference. Those of us who were born 80s or earlier are the ones that are generally dragging down the CF life span average. If they just looked at people born in the 90s or more recently, the average, I can guess, would be a lot higher. That means your daughter.

CF is no picnic. I know this, you know this. I would never tell you otherwise. There are times your daughter will want to scream at the world. And she has that right. BUT it's getting better and better. Chances are, and I'd be willing to bet, she'll do a lot better than some of us currently floating around.

-Emily (Emily65Roses, at school, not signed in)

 

[anonymous]

There is no need to tell anyone off- I'm not that way, don't need to stir up drama. I included names when I had something positive to say, no need to name names for the other category becasue there is not need to argue !

 

[JazzysMom]

I understand the thoughts of Lisa's Mother In Law. My Mom is the same way. NO matter the accomplishments & no matter how proud she is, you can read it her eyes that says "too bad she is still dying". Its a hard balance to keep optimistic without being in denial. To stay on top of things with germs & health without seeming you are putting your child in a bubble. Just like the progression & severity the coping skills of everyone varies. I was dx at 7 after years of digestive problems. Tons of allergy testing that lead to no answers. Finally a sweat test that confirmed the problems. I did fairly well considering I didnt do treatments. The only thing I did religiously was take my enzymes because I knew the pain & smell that came if I didnt. Why didnt I do my treatments you might ask? Well I personally think my Mom (not so much my Dad) thought I should enjoy what time I had & not waste my days avoiding the inevitable. So hear I am 31 years after dx.........who would have thought that I lived a great life with 2 marriages, 1 child & some fabulous jobs. Troubles in my health that might or might not have been as bad if I did my treatments throughout the previous years. I can only envision how much more I could have done had I taken better care of myself. In many ways I dont regret how I lived. Because I experienced joy with no question!