new, concerned, looking for answers

[xpanther38pridex]

hello, i am writting on behalf of my fear for my best friend. i know she has CF and ive read up on it. My biggest fear is her death. Is it inevitable that everyone with CF dies at an early age, average being 30's? What if a lung transplant opperation occurs, what does that do for life expectancy? Please id love to hear from any of you who might have answers. I Appreciate your knowledge and support.

 

[Faust]

Well we all die, it's just those with diseases are on the express elevator. I've had enough with most of reality at the age of 34 (almost all due to human beings), I couldn't imagine how i'd feel if i lived to into my 80's. Enjoy your time with her, and encourage her to take care of herself and stick to her chest therapy and meds/aresols religiously, and to remain very active, and possibly look into the benefits of some essential oils for sinus/lung problems, and supplements, and she could live a very long life (with regards to CF). As far as lung transplants go, i'm far from an expert, and things have probably changed a lot since my associations with them, but to me lung transplants (if they stick and you have very little complications) are an extension on an already shortened life. Many times you are trading one set of problems in for another. Some people with them have pretty active lives and even compete in athletic events, so who knows. But because our disease is genetic, untill our genetic defect is corrected itself, we will always have the disease, and have a shortened lifespan. Attitude also plays a huge role in lifespan in my opinion. If you are very meek and just let your physician do anything they want to with you, and get all apathetic and want everyone else to be responsible for your disease, and don't have a "eat live bullets and drink acid" mental toughness, theres a very high chance in my opinion that you won't live too long with CF.

 

[jimhigginsCF]

Dear xpanther38pridex,

I can agree with Sean Davis on only a few techical items to which as a new CF member I know are true. It is true that CF is a "young Disease and life expentancy over 30 is not expected. Mr. Davis in my personal opinion has made some quite scathing pundint and quite obtruce remarks from what i have researchered in just a few days. I'm sure he means well, but afflicted as well I cannot begrudge him to be angry at the illness.

I just got involved quite by accident here today from a young man of 20 who passed last November. A man i never met and after 48 hours of learning A-...I think H now...being a non-CF I do feel out of sorts commenting on personalized prognoses.

But I'd just like to lend you any support that I can (I'm not rich..but live across the street from Microsoft Headquarters). I can put in a good word to Bill in note.

As from my novice understanding of CF, you have every right to be concerened about eventuality. 35 + is a Gods blessing. Lung transplants in the worst conditions will always be the only exit option if covered, and that she get accepted on a waiting list for a hospital for a transplant.

It's a long gruesome process in many cases just to get to the operating table to extend her life 5-7 months longer...maybe a year (that is the most very optimistic).

Depending on where she is now....she may have rich years ahead until she eventually hits that speed bump in CF.

It's like swimming in a pool of sharks. One on these day's she'll eventually get bitten.

What is sad is that currently there is nothing to kill CF in technology. Lung surgery and liver/kidney tranplants, all are the same.

There was one young man who brought me to this fight against CF...unfortunatly he had passed away. Please feel free to look here (www.save-allan.org) and learn of the disease and life that this young man faced.

He was quite a online guy with many many websites...you'll spend a week at least following his philosophy about life and his day to day strugle with CF.

No, I'm not a doctor, but CF eventually claims.

So do what you can in the meantime. Educate yourself and plan out your future together.

I hate to agree with Sean Davis, but CF is one of those express elevators.

My mother died from stomach Cancer. She was diagnosed at 8 months when it became critical. She had choices to extend her life...kemo and drugs for a few extra months.

I remember crying at the kitchen table with her pleading with her to take the kemotherapy.

She smiled and looked at me and said, "You'll die someday too".

She sat there frozen with that smiling face for seconds. It seemed like a lifetime looking back.

Then it began to sink in. She had accepted her fate, and I hadn't.

She always knew when things were best by that smiling frozen face...lol

She did the same thing whenever I had a scrape, a busted tooth or a broken arm.

The implausable face.

Rubbing smelly Vic's Nyquil on my chest when I had a cold at night, holding my hand during finger surgery.

The list goes on and on.

But she knew what was always best.

Sitting there with tears streaming down my face at 35yo, touching my hand and that pasted on smile on her face.

I knew she had made her decision.

But 3 months or 5 months, she didn't want to struggle it out. She knew once it called she was destined to go eventually.

Damn mothers....lol

But, because Allan has brought back my emotional spine (no I not suffer nor anyone I know suffers from CF), there is always understanding and education and needs here on this board.

I'm sorry I'm a newbie here, but CF is now for me a personal cause, much like yours for your girlfriend.

I do give you all my support.

Jim

 

[littledebbie]

The only thng you can really do for your friend is what you are already doing...be her friend. Let her talk about her life including her death. Sometimes I think that our (a CFer) comfortabilty (Is that a word?) in discussing our death makes people uncomfortable they ask us not to talk about it, like saying it will make it happen sooner? All that does is leave us with no one to talk to, that's lonely. Don't get me wrong i don't go around making references to my death all the time but on occassion I might say "oh by the way if you play this song at my funeral i will come back and hide your car keys from you for the rest of your life". I know it's a dumb thing, but for me talking about dying a little, makes it less scary, more a natural normal thing. Harry Potter fans, follow me for a minute...I think it's like the "he who shall not be named" thing, if you are that scared of it it makes it worse.

Also, you have to respect the way she is handling her CF. realize that although this is new to you she has been dealing with it for a long time, and she has probably done her research on it, and has a course of treatment for herself and has probably given consideration to a transplant and while I try to be patient with people when they start asking me if I've thought of trying this or that, I kind of have a hard time not smacking them and saying..."really albuterol you say? and I should inhale it?, why you don't say, what will they think of next?"

Jim: SeanDavis angry at the illness i didn't get that, sick of people maybe, then again people are pretty darn annoying sometimes. Also, I think your transplant numbers might be a little dated...I'm no expert anyone else want to tackle that?

"eat live bullets and drink acid" heaven knows our pills are about the size of bullets sometimes, how come computers are getting so small but my pills keep getting bigger?

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>jimhigginsCF</b></i><br>Dear xpanther38pridex,



I can agree with Sean Davis on only a few techical items to which as a new CF member I know are true. It is true that CF is a "young Disease and life expentancy over 30 is not expected. Mr. Davis in my personal opinion has made some quite scathing pundint and quite obtruce remarks from what i have researchered in just a few days. I'm sure he means well, but afflicted as well I cannot begrudge him to be angry at the illness.



I hate to agree with Sean Davis, but CF is one of those express elevators.
<hr></blockquote>


I'm not angry at anything, except for tons of stupid people I inevitably have to encounter on a daily basis that should probably be fed to the volcano gods, it would help us all out in the short and long run. I just don't believe in sugar coating anything, unless you are dealing with real young children because they don't have the capacity to understand things yet. My presentation might be blunt and to the point, and barring several retarded responses for the sake of being silly, you'll come to learn i'm often more right than wrong when it comes to perspectives on this disease. You basically agreed with nearly everything I said from my previous response, in your response. Life is filled with WAY too much BS, and I call it how I see it, which is without rose colored shades.


Sorry to hear about your mom, i've lost nearly everyone close to me due to this disease and other factors not attributed to this disease. Death sucks, try to suck as much out of life in a responsible manner as you possibly can, and above all else, try and find some humor in the whole human condition.



p.s. Please feed more crappy people to the volcano gods. Thanks

 

[anonymous]

Jim,

You wrote "It's a long gruesome process in many cases just to get to the operating table to extend her life 5-7 months longer...maybe a year (that is the most very optimistic). "

I might not be reading your comment correctly, but were you saying that lung transplant at its best can give you an extra year of life?

That could not be further from the truth. There are people 18 years post lung tx, and many CFers are alive and doing well at 10 years post tx. I am now 8 years post tx.

For the original poster, I hope your friend does her therapies, encourage her to do so, and participate in them if you need to. If lung tx does become an option some day, by that time, the therapies, the drugs, the surgery will have improved and even better results will be realized.

I hope your friend never needs a lung tx, that science will continue to move forward and new drugs will be discovered to help those with CF without needing new lungs.

If you have any questions... please email me..
luckylungsforjo@aol.com

( I am a rare one that I don't mind my email included on my emails... I have nothing to fear!)

Joanne Schum

 

[Lilith]

<blockquote>Quote<br><hr><i>Originally posted by: <b>SeanDavis</b></i>p.s. Please feed more crappy people to the volcano gods. Thanks<hr></blockquote>


Believe me Sean, I have a whole list about ten miles long of people I'd like to fly to Mt. Fuji...

To the OP, like everyone else has said so far, make sure she takes good care of herself by doing her therapy, eating right (for a CFer, anyway. Its important to keep that weight up because without that, everything else goes downhill!), and getting exercise on a regular basis. Also, to help her with the emotional aspect of the disease, get her into a few hobbies to distract her from it. For instance, I write my own stories and draw to pass the time. It really helps me forget about the nasty aspects of life for a while. My friend Sarah also takes me out a lot to the movies and the mall and whathaveyou. She practically forces me to get off my duff and out of the house, which I'm very greatful for. Besides, walking a mall back and forth all day gives you a great workout!

To Jim, yeah, your transplant numbers are way off. I just had a discussion with my doc about this on my last appointment. The average life span after transplant is 5-9 years according to what I've read and heard. The survival rates at my hospital are pretty high, also; 75% for the first year, and 65% after the first five. Those numbers could be better, but they aren't bad, either! I was scared to death of getting a transplant. Hell, I still am. But like Sean said, depending on your mental state and how much you really want to live, its a small price to pay for a few more years with your family, lover, and friends.

 

[JazzysMom]

I have to say that I dont pay attention to the "average" lifespan numbers anymore. I have beaten the odds from my dx to the present & find that if I focused on the negative of CF such as lifespan I wouldnt be living. Support your friend...like others say encourage her to do her treatments as she should, get her to exercise...most importantly help her to "live" instead of just exisiting even if that means accomidating to what she can/cant do according to how she is feeling!

 

[Faust]

Speaking of transplants, maybe i'm weird, but this made me think of the few times i've had surgery to remove something. I had a swollen gland removed from the crook of my groin and thigh when I was like 9 years old, and a cyst removed off from around my shoulder blade when I was in my late 20's. Both times I begged for them to give me what was removed, and they both times told me no. They had them in real cool sealed containers too, and I mean, it grew in ME correct? So it's a part of ME correct? Why can't I have it back and like keep it for display purposes on the mantle of my bed or my PC desk? My friends are all sicko typical goofy guys, so it would have been a badge of honor amongst my other male friends to say (during a game of madden on the xbox and pizza and beer) "Guys remember when I went in for surgery to get blah blah taken care of? You guys have GOT to check this out", and then bring out my growth for them to look at and inevitably say "OMFG that is beyond disgusting...Lemme look at it some more!". I suppose if they won't let me keep small biological masses removed from me, they surely won't let me keep my lungs once they are removed and I have a transplant. Kind of sucks, because I feel pretty closely attached to my lungs, and if/when they are ever removed I don't want to just throw them away into a hospital incinerator or have some knob medical students dissect them.


Maybe i'm weird, but I find things that are produced by my body interesting, and if they need to be removed, I want to keep them. Every knob out there has something cliche to show others that they are proud of. How F'ing cool would it be to be able to say (when someone new comes over and you are BSing with them over beers) "Hey, wanna see my old lungs?". THAT would F'ing rock the house.

 

[JazzysMom]

I can totally see you having a special display cabinet made with each container labled of its contents & date of removal etc. I also see you not wanting to get rid of it should you actually get married.....poor lady!

 

[jimhigginsCF]

I would like to apologize to the people on this topic. Since I don't know anything about CF, I really shouldn't have posted.

Sorry.

 

[oddfreak7]

i have cf and im 11 i dont wanna die soon i dont like hearing these things<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>jimhigginsCF</b></i><br>I would like to apologize to the people on this topic. Since I don't know anything about CF, I really shouldn't have posted.



Sorry.<hr></blockquote>

No reason to apologize man, even those of us who have suffered with the disease for a long time don't know everything about it. You are never too experienced to not learn something new.

 

[Allie]

<blockquote>Quote<br><hr>i dont like hearing these things<hr></blockquote>


Here's my equation: Adult board + adult topic = truth, so if truth > fiction, ,,,,well, if you square fiction times pi...nope, the truth is still what you get on here.

 

[JazzysMom]

Love the line in your signature from Lilo & Stitch, Allie!