CF makes no sense ....

[JennifersHope]

This probably is stupid... for some reason I can be an open book on this website but in real life.. it is hard to express my feelings except with a very few ppl... I think I dwell more about it when I don't feel good but CF is pretty freaken stupid.. and makes no sense... I guess I feel a little stressed tonight... Seems like in the past few weeks especially I have talked to so many ppl that have CF but were healthy for a good part of their lives and then one day... they just got real sick....cultured a bad bug and never got better....

I always thought Cf was progressive meaning if you had PFTS in the 90s.. they would only slowly go down to the 80s and so forth.... over years and years... but it seems like I am meeting more and more ppl who never had IVS, were hardly ever sick.. and then they caught something and either died within a year or need to be transplanted shortly after, even though their PFTS were real high just a few months before...

That doesn't make me feel real secure at all...and I know all the right pat answers... like their are not guarentess and stuff like that.. but I am pissed about it for some reason tonight...... I have a dear, dear, friend that was doing really well.. now he is culturing Cepacia and he is real sick... happened real fast.... makes no sense....and I can't do anything but hope and pray....

I also am trying to plan for my future.. since I am graduating soon.. and I realize I can't plan for anything... because I don't know what is going to be... I can't buy a house on my own since Lord knows how much I am going to be able to work... It feels like each day I have to let more and more of my hopes and dreams for the future go....I don't know if I am going to be able to make it on my own... buying a home... being a foster mom... or doing anything other then just surviving for those few weeks in between being sick where I feel good.....

Anyway... I am just fed up probably because I am not feeling well again....and I am realizing that my future doesn't look so great.....I would love to know how any of you deal with this... Being that I didn't know when I was younger that I had CF.... and I don't think it would have made a difference anyway, but I had lots and lots of dreams for my future and slowly each one of them is being taken from me..

Thanks for letting me vent.....

Jennifer

 

[Emily65Roses]

If it makes you feel any better, I'm one of those more progressive people. I got MRSA and several pseudomonas when I was 16, and since then I've been slowly progressing. I've gone from 90-100% to 70% in 5 years. That more like the slope you were expecting? Not everyone suddenly gets one bug and then is just dead within a year or two. Allan, from what I understand, had cepacia for a long time before he died (if I remembered that wrong, Jess - or whoever else - feel free to correct me). It's possible that you'll get one thing out of nowhere and then croak within a really short period of time, but really anything's possible. I'll even say it's somewhat likely. But it's also likely you'll pull a "me" and get something and slowly go downhill like you sort of expect to.

As for planning a future, I am the LAST person to talk to if you want sensible advice and emotion-free reasoning. Hahaha. I fight with Mike about this crap all the time. "Omg we need to get married NOW!!!" Hahaha. I know it's too soon and we can't afford it now anyway, but I often feel that way. If you just want to talk about and relate some of that stuff, without necessarily expecting any kind of answer, then I'm your girl. I know you don't have AIM, but you can always email me (Emily65Roses@yahoo.com). Also, if you've got an LJ, or a myspace, or facebook, I'm on all of those as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

((((Jenn)))))....I know you are frustrated and I think we have all thought about this question. People are just so different, so why shouldnl't this disease be? I didn't even know I had CF until this year, my PFT's were decent until about 3 years ago and then really went downhill, but ironically it wasn't the CF...it was my muscular dystrophy. I know some people who have lived with these terrible bugs for years without too many problems, but have also met others who have went downhill quickly once bugs like cepacia and MRSA were contracted. I have cultured cepacia since April of this year, since then I have been on several IV's and in the hospital several times with cepacia pneumonia....but llike I have said, others have cultured this bug and have done reasonably okay. I have done alot of reading about this bug, there seems to be at least 9 types of cepacia, each with its own virulence. I believe I am genomvar type III (or is it II), I know it is associated with more problem though. I too get very frustrated when I see a new bug grow out in my petri dish...I just take it alll in, go with the treatment and pray I get through the crisis in front of me at the time. I also don't look too far into my future, I just live day to day.

I know how you feel about getting through school and what your future might hold for you...I say just go with your heart. We tend to feel this way when we are feelling crappy....like I do tonight, I am running a bit of a temp and pray my cepacia doesn't go nuts, maybe it's viral which I hope it is considering everyone has been hacking around me and saying they have colds. Colds I can do, but I am not ready for more IV's just yet, I want to give my port a chance to rest some. Hopefully as you start to feel better, your outlook gets better too..I think most of your feelings are of frustration than anything. It's like climbing a ladder a few rungs and then having to go back 3 and so forth...just when you feel decent, a wrench is thrown into the works, am I right? I don't know what my future will bring...if I had a crystal ball, Iwouldn't be looking into it. I don't want to know how much longer I will be here, I know I won't be here into my 40's, having both CF and muscular dystrophy is not a good combination, but who knows? My family always says pray for the miracle, don't get me wrong, I have faith and hope but I am also realistic about my disease and its progression. II know ultimately its the infections that are goiing to win, not my weakened muscles. I have seen rapid progression in just 9 months regarding my resp. heallth. But hey, I am here now and plan to live the days I am here......

So, my friend....hang in there, keep plugging along and follow your dreams the best you can. I know it is so hard to even think about, but do what your heart tells you to do. You are in my thoughts and prayers, I know you aren't feeling well....many hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

My nurse told me that the "statistics" say cfers lose 2-4% lung function per year. But in reality, cfers "usually" get sick and lose a bigger % at a time. That is the case with me. I hold steady for a long time and then drop 10% or something. But everyone is different.

 

[Allie]

I agree, CF sometimes makes no sense, and the frustration can be overwhelming. It seems like you expect one thing to happen, be it bad or good, and the opposite happens. It deos make planning near impossible sometimes, but sometimes you have to dream, as dreams are all we have. expect the best; accept the worst.

Ry was one of those who was declining normally, then caught cepacia and all of a sudden it was "Oh my God, what the hell?" Very frustrating to deal with. But that may not happen to you. CFers are like fingerprints, no two are the same. And no one can really tel you what'll happen in the future, as frustrating as that is. My Im id and email are in my profile if you ever need anything.

 

[Emily65Roses]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Allie</b></i><br>CFers are like fingerprints, no two are the same.<hr></blockquote>

Ooh oooh! Or snowflakes! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

I am pushing 30 with CF and think very differently than you. I know every person is different...and you are probably going through much worse times than I have. I have had some hospital stays don't get me wrong...and have usual ups and downs with my health, but I react differently than I think you may. I am known for my smile...cant take it off me..not CF, not the guy who cuts me off on the freeway, not low PFT's, not stomach aches...etc. Life is short..for everyone, and to go through it not planning ahead and only assuming you are going to get sick and die isnt really living in my book...more like waiting for the end. I know I wont live as long as the guy sitting next to me, but the way I figure it...if I live those years happier, more loved, more loving...and overall more fulfilling...then I have lived twice the life he ever will...regardless of the length of years. My doctor(s) tell me things they don't think I will be able to do...either now, or when I get older...I thrive on that...I have always and will always try to prove them wrong. I don't set goals of what others expect of me, but instead of what they expect of themselves as a healthy person. Aim high...you may surprise yourself.
My thoughts are with you...hang in there...hopefully tomorrow you will bring you an outlook today hasn't.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[cdale613]

Amen!

 

[anonymous]

Through out my teens I had complications but, my problems hit me when I was 21. I grew MRSA and from there it went down hill. I am now fixing to go through a TX and I am oly 29. I own a home and never look back to what could have been. I don't plan my life around my CF. I just rool with the punches. It is what it is. Every day is a battle and at time the future looks like a dark road. All I do is fight to go forward and do the best I can. Everyday is a new one. Holding on to a bad past makes the future look dark. I can't afford to do that.

 

[anonymous]

My husband was a fairly 'healthy' CFer until he grew MRSA. From there it went downhill very quickly. We were shocked at his rapid decline b/c we were always told the decrease in lung function would be gradual. The first of his last 2 years we believed he would bounce back. The last year it slowly sank in that the end was near. First O2 at night, then 24 hrs, then liquid O2, then the bipap at night, and then all day- thats when itstarted to become real. Even though we knew he would not recover, I was still surprised when his last day came, maybe I just couldn't accept what was happening.

Melissa

 

[JennifersHope]

Hi,

Thanks for your replies... I think I was just having a bad day.. coupled with having a friend that is real sick ... etc etc.. I know you are right, I feel the same way.... just kind of tired of it is all...and I am tired of watching ppl I love suffer as well... I also think a lot of my fears came up when I cultured MRSA in October.. I know that is one that is a crappy one ....


Anyway, I was venting, and I appreciate the support. and freedom to be able to...Sometimes I just need to share what is going on inside...If you are a human being, it is impossible to not get discouraged once in a while.....and I know this is the place I can let it out...

I normally am very happy and also I am very goal oriented... I do plan for the future but the reality is this disease does have limiitaions.....

Thanks again,

Jennifer

 

[Diane]

Hi Jennifer,
I am one of those people who went from din g extremely well to getting b.cepacia and watching my pft's drop. Most of that drop was my own fault . Since i had never had a need for any treatments before , No vets, no percussion, etc. i was more than willing to start doing them when i got cepacia. It took till i had massive hemoptysis twice and two embolizations till i woke up and realized cf is serious and not to taken lightly like i did all my life. I've had cepacia almost 9 years now and i plan to be a cf patient who has it for many many years without ever needing a transplant. I know it sounds so wishful and it is........ One line in the movie "stepmom" is one i always remembered.... Julia roberst asks the mom of her " stepkids" if she is dieing ( because she has cancer) and she responds........."not today". I LOVED that answer and decided to try to live my life with that thought in mind. I also get very depressed when im not feeling well, especially if i end up real sick and on iv's. I have no answer to give you to make you feel better about the future. I can only say that i have left that part of my life up to God............................................................................

As for Emily's mention of Allan having cepacia, he had it since he was 5 ( i asked him) so he had it for 15 years. I think his death shook us all up.

 

[Allie]

We were the same way Melissa, 2.5 yearsseparated my fairly healthy,vibrant husband and his funeral.

But what's most frustrating Jenn, can be the loss of autonomy about not being able to plan ahead for anyhting. I say go for it anyhow. Ry used to say. "whether I die tomorrow or a year from now, I will live and die by my terms, my way. " Don't let things pressure you into feeling like you have no say in life. It is your life, and ALWAYS you will be the one living it and deciding how best to do that. CF or no.

Something else he used to quote was from Charles Bukowski "We are here to laugh at the odds and live our lives so well that Death will tremble to take us " So don't ever fear my dear, although reality is always good to keep in mind, practical as I am, sometimes you have to laugh at the odds and just keep living in spite of evidence to the contrary. That Death might tremble to take you.

 

[anonymous]

ok so I feel totally stupid asking these questions but in almost every topic they are mentioned and i feel like people on here are non-judgemental so maybe i won't get ridiculed. what is b cepacia or MRSA? I have CF and have recently joined on here (always forgetting to sign in cherry btw) but have more questions than helpful comments so maybe someone can help me. i said it before once, my parents kept CF a secret and once i knew i was at such a loss i didn't know what research to do on it. so i have grown up just going on, not really knowing how important my medicine is or what can really happen? how do i know if i have these things? my pfts are in the 50s and have been for five years... i just feel like there are so many bad things out there about CF that it is hard to know what to concentrate on

sue 23 w/ CF

 

[Emily65Roses]

B. cepacia AKA Burkholderia cepacia is a nasty bacteria, regarded by most as the worst a CFer can get. You can read up on it here:
<a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/bcepacia.htm
">http://www.cysticfibrosismedicine.com/htmldocs/CFText/bcepacia.htm
</a>MRSA is Methicillin-Resistant Staphylococcus Aureus, also a generally pretty nasty one. You can read up on that one here:
<a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/mrsa.htm
">http://www.cysticfibrosismedicine.com/htmldocs/CFText/mrsa.htm
</a>
Hope that helps. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JazzysMom]

Thanks Emily. I never had any "official" information on it.

 

[thelizardqueen]

B Cepacia and MRSA - how are those transmitted? Can I only get them through someone that has it? Because I don't have either, and really don't want to get them in the future. Or is it just something we grow on our own?

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Allie</b></i><br>That Death might tremble to take you.<hr></blockquote>

When Bukowski died, someone wrote somewhere, "Serves him right, the way he lived." The thing was, he was about 73! So maybe, just maybe, if you're bad enough...!

Q

 

[Emily65Roses]

The most common way any of us get MRSA or cepacia is through other CFers that have them. You can get them through non-CFers too. I got MRSA from sick old people. Cepacia, to my knowledge also grows in rotten onions. But like I said, the most common is just from other people who have it.

 

[thelizardqueen]

Well I never associate with CF people for whatever reason. The people I was friends with in clinic are not longer with us, and I haven't had a hospital stay since I was 16. I guess I'm good to go for the most part I hope.