I have never really felt like I was going to die of CF, ever. Until now. I'm 28 and find myself coughing ALLOT more then usual, not being able to do nearly as much as I used to be able to do. I have never told any of my friends or family as I feel as I don't want to "scare" or "worry" them. I'm such a positive person and appreciate life in so many ways. I figure I can come share my true feelings and my fears with other Cfer's in hopes I'm not alone on this. This feeling may be brougt on by having lost 4 Cf friends in the last few months...it's becoming to "real" when I see ppl my age dying. I may sound like a depressed person on here but I'm not really, just some feelings I'm having these days.
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Is anyone scared?
- Thread starter anonymous
- Start date
I can relate to what you're feeling. I've felt the same way, but I just trust in God & His perfect plan. Sometimes, I push those depressing feelings to the back of my mind, which probably is not good, but I, too am a positive person and don't like to dwell on depressing or worrisome things. It does go back to my personal belief that my life is already mapped out for me by God & my worrying isn't going to add one day to my life. Again, just my personal belief, others may not agree.Death is a scary thing, one no one likes to think about, but everyone will deal with it, CF or not.As far as your coughing goes, does your Dr know & are you being treated w/ oral or IV meds for it?There was a time recently when I started having the feelings that you're having & was facing my second round of IV's in a few months time & I told the Dr that I would do IV's if he didn't feel that there was a "miracle" drug that I could take. He prescribed doxycycline for the first time and it actually helped immensely! I'm not saying this is the "cure all" for everyone, but it sure helped me. One other thing to keep in mind is that CF is normally a slow progressing illness, which could be a good or bad deal, depending on how you look at it. Just because you're coughing more than usual doesn't mean you're knocking on death's door.I hope this helps. Please know that there are hundreds of persons w/ CF that probably feel exactly the way you do and you're not alone <img src="i/expressions/rose.gif" border="0">
HollyCatheryn
New member
Boy do I understand. There was a time, not too far back that I lost a couple of friends and another went on the tx list, one came off the tx list, and my body was doing all sorts of new weird things. I too felt like it had all become so real to me. I know that God has a plan and I know I've been blessed by living as long as I have, surviving some of the things I have, and having been able to do and have so much of what I've wanted. But it still feels frightening when your life seems to be out of your control and passing by faster than you want to go. One of the difficult things about living with CF is that is is always changing. One year, or even a couple, can be really bad with lots of complications and hospitalizations, and then it can get better as quickly, dramatically, and surprisingly as it got bad. The few years at the end of my teens were really bad, in the hospital every couple of months, 4-5 sinus surgeries in a year, oral antibiotics all the time, having to forfeit a semester of college and quit a job. When I met my husband, my health was so complicated and seemingly severe that I was sure he'd want nothing to do with me, but he did. Even when I got sick 2 days before the wedding and was sick all through the honeymoon - and next 6 months of our marriage. But, since then it's gotten steadily better. I've been in the hsopital and on antibiotics less in the last 3 years than even as a kid in elementary school. I know there will be more ups and downs and I hope more of the former than the latter. But, I guess the point to my ramblings is that it is easy and normal maybe even necessary to feel and think about deteriorating and death. It helps to make each day we do have more precious and helps us to do more with each day. The point though, is to think about it, feel it, and then put it away when you're done with it so that you can get on with the business of living. Sometimes I get scared when I think about not being here for my daughter's wedding or her children, but other times I try to think about being here. It's easy to be brave and unafraid when you're on top and your body is doing what you want it to do and not doing what you don't want it to, but when you're down it's harder. Hang in there. The tide may be out, but it will come back in again. No two waves are identical, but they do always come and go. My heart is with you and my prayers.
I think that every person with CF can relate to your post. We all have to deal with the fact that we can't do things we use to be able to do. I was not diagnosed until I was 22, I played hockey for 14 years and played all kinds of sports in school. When I got to college I had a full course load and had to work there was no time for hockey. That is when my problems started, I started getting the cough everyday and I finally had enough and requested to see a specialist. I haven't been able to play hockey again. Whenever I am feeling down about things I always try to tell myself that no matter how bad things may be for me there is always somebody somewhere that has things a lot worse than me, and I should quit my complaining. You are 28, and I gather from your post that you are pretty healthy except for the coughing that you have been doing. I was reading an article in the newspaper on Tuesday about a 14 year old girl who had less than 20% lung function left and even that was starting to fail to. She probably would not have seen her 15th birthday, but she got the call from the hospital that they had found a match for her transplant and she is now doing fine with 80% lung function. She is very lucky. When I was 14 I was wondering how many goals I was going to score, this girl barely had the energy to get out of bed to take a shower. Just remember, everyday you spend on this side of the dirt is good day.Dave 29 w/cf
Thanks guys those are all great replies. I too strongly agree that we are here for a reason. God has a plan for us, even though we may not know it now...it'll all make sense one day. As for me, I am seing my Dr. Tues. I never used to have to take meds, masks or puffers daily until now. (last couple yrs) I can not go a day without taking them. My coughing isn't the only prob. I have been hospitalized numerous times this yr alone. It's only July. I guess it's all part of living with CF. It is hard at times but I guess that's what makes us stronger. Thanks again for all your great replies. I am thankfull for my life, I appreciate everyone in my life and live each day to the fullest. I also know...it could always be worse. I wish you all the best, thanks!
I know what you are going through i am going through the same thing right now. I am fighting a bacteria that constantly goes away but always seems to show back up. I have been dealing with this for 9 1/2 years now and i am getting so tired of it, dont get me wrong i am not looking looking to give up i am a strong believer in god myself and feel that he put us here for a reason but lately i have been finding myself coughing more and short of breath easily. Dont get my wrong i have had my fair share of times where i did not take my meds trying to live a normal life like everyone else and i know that doesnt help but i just wanted to put my feelings out there cause it is no good to hold them in and i dont really want to tell my friends, family or fiance for the same reason of not wanting them to worry more than they already do.Marisol 23yr old female NY
hi, my name is heather. i am 19 w/cf. i can totally understand where you are coming from. as iv'e gotten older my lung function has declined a lot!! my pft's used to be in the 80's and 90's, and now they are only in the lower 50's. i have also recently lost 4 friends to cf, 1 which was very,very close to me. it was the hardest thing to watch, especially because i knew they were dying from the same thing that i have. i just try to look on the bright side of things when im down. feel free to e-mail me at stevesxbabyxgurl@yahoo.com if you ever wanna chat...take care heather 19 w/cf
I've been having alot of similar feelings lately. It never used to bother me that much, but turning 30 has somehow made those thoughts pop into my head alot more often. It's worst when I'm laying in bed, trying to sleep and not really thinking about anything...then it sneaks into my head and keeps me up for hours. CF of course, has affected alot of the decision making in my life...and some of those decisions have probably robbed me of some very happy times. Deciding not to search for a soul-mate so she won't have to bother with planning my funeral is one of the big ones. It's made me push alot of people out of my life over the years for fear of becoming emotionally attached. Can't make the CF go away, and I don't intend to make any depressing feelings go away by taking more prescription medications, so I just take the good with the bad and carry on each day...and try to keep busy enough to keep those bad thoughts out of my head.Richard 30 w/cf
bowlingguy
New member
in all honesty im more scared about leaving the 1's i love behind. when seeing alot of my cf friends pass away, its made me realize its not the 1 that passes away that suffers but more so his loved 1's. I ofcourse dont want to suffer near the end and kinda scared about that. But like richard I get through life by keeping busy, and I too have pushed away women because I didnt want them to have to bury me either...
I'm 28 too and swear I wrote your exact post earlier this year. I've been very lucky all my life, than everything kind of came crashing down starting in December. Now I feel like I'm 80 years old half the time - sadly I was recently looking through my community center's class offerings and actually turned to the senior citizen section to see if they had any sorts of classes for folks with COPD and the like. It was like - I woke up one day this year and was suddenly told I had CF. I've been struggling a lot more than I ever have before - and for the first time - I have to use supplemental oxygen from time to time. But - I read through my PFT and medical histories over the past 10 years, and you know - it's like everyone here has said - it comes and goes. I saw PFT tests that were 40%, and then a year later they were back in the 50s. So, you can improve - it's just, it seems now at 28 - I don't improve quite as fast. Like they say - things start to slow down when you hit your 30s (metaboism, energy) so it could just be that. I too am a positive person and never really thought I'd die of CF. Now that there is an option for a transplant (by the way - I just got listed), I know that I won't die directly of CF. Also - I hated talk to my family about my fears, but you know - they always tell me - if one of them were sick - wouldn't I want them talking to me? Of course! So, if you need to talk - vent here on the boards, or talk to your friends and family - they may not be able to totally understand, but they can offer support. Don't be afraid that you'll scare them - they ARE scared and ARE worried already - you not talking to them actually furthers that because then they feel they can't talk to you about their fears about you. Anyway - I'd love to chat via email with you - so please feel free to send me a note.Piperpmcp@comcast.net
Hi I am new to this site and though I do not have CF my boyfriend does.My boyfriend worries alot about his CF and I find it really hard sometimes as I really wish I could do something but I don't know how it feels to have CF and sometimes I really don't know what to say to him. When we first got together I didn't know that he had CF he told me a few months later as he was scared to tell me but I always tell him that I fell in love with him before I knew about his CF. I get scared about the fact that he could die at an earlier time but I always try to tell him not to dwell on it and to try and stop worrying about it so much and just live day by day cause if you let it get to you are not going to enjoy your life as much I realise though that it is easier for me to say because I don't have CF.
Well, if this isn't a coincidence. I just finished a long, very difficult week, and actually got on to share my very similar thoughts and feelings. Low and behold, you beat me to it. But I'll comfort you in knowing that you are not alone in how you're feeling. I've been out of work for the last 2 and a half weeks, just feeling overly crappy. I've got another bad sinus infection, and am on 6 weeks of Omnicef, it's slowly working to clear me up, but I've just been getting SO winded so easily lately, with a dry cough. So I went in, and saw my doctor, but discovered my lungs are 100% clear, even my atolectosis is cleared up. (A little background on me, I haven't been hospitalized for a tune up in 4 years, I own the ThAIRapy Vest, but I don't use it, as it's Really uncomfortable for me, and only aggravates my cough more. I started taking enzymes when I was 14 months old, and about 4 years ago, I put on a decent amount of weight, and found out that all of a sudden I didn't need the enzymes anymore. So for the last 4 years, my only real symptoms have been my sinuses, with 6 surgeries and picc lines in that time. I've been so good, I haven't seen a CF specialist or pulmonologist either. I was going thru that rebellious, 'I don't really need all that care' stage, and I was doing pretty good.) So, my doctor put me on prednisone, but after a week, that didn't help. So she sent me to a pulmonologist, and I got horrible news. Now, I've never been horribly chronically ill, when I start getting winded easily, or wheezy, I've always been hospitalized and tuned up, and I'm good to go. I got special treatment in Gym in school, because I did get so winded after strenuous exercise, but like, if I wanted to race somebody, or go horseback riding, I could for short periods, and I'd just be winded a little. But the pulmonologist was very frank with me. My PFT before a neb was at 58, and after, it rose to 82, and then 4 hours later was back down to 56. He decided to put me on the 500/50 dose of Advair, Atrovent, and Singulair. I just kind of looked at him, and asked why he wasn't going to just hospitalize me for a tune up. He said it wouldn't help. I asked if these would take care of the getting winded from just walking across the room, and he said it might, but probably isn't going to make a significant difference, these meds were just to keep me from getting worse. As for PFT, I'd probably be around 60 'normally' and will need to start doing my Xopenex nebs 3-4 times a day if I wanted to stay in the 80's. Permanently. It really hit hard. To be told that if I want to go horse back riding, or take my dog for a jog, or even just mow the lawn, I WILL go into an full blown attack... for the rest of my life. That how I feel today is about as good as I'm ever going to feel again... Ouch. I've been living so well, so free, and now I HAVE to go home RIGHT after work every night to do a neb just so I can breathe. I'm depressed. I've been on all these meds for about a week now, and they were only supposed to take 3-4 days to kick into full effect... I don't feel a lot better. I've been bed ridden for the last 2 days, and I missed my sister's High School Graduation party this weekend because the muscle twitching from the constant Xopenex is causing my muscles to ache. I can't even stand up, my thighs hurt so bad. I tried to write in my journal tonight, and ended up throwing it across the room because I couldn't read what I was writing, I was shaking so bad. I have beautiful handwriting, but now I don't even recognize it. When I was younger, and was in the hospital more, I had a couple friends with CF. Two passed away about 3 years ago, and another I lost touch with after I stopped being hospitalized. I guess that may be why I refused to go to any of the CF clinics - I didn't want to make anymore friends with CF, it was too hard to lose them. I know I'm lucky to have such a mild case, and most aren't. I can't take being close to the unluckier ones. Especially the young ones. It's too hard. And now here I am, I'm as good as I'm ever going to be, my health is down hill from here. Kind of sucks. So I took this weekend to just kind of collect my thoughts, and decide what I want to do with my life. I still don't have a clue. But I know I want to do as much as I can. I want to ride horses anyway, and jog my dog anyway. I'm just going to be extremely uncomfortable doing so. Good news is that my boyfriend has finally agreed to mow the lawn from here on out. <img src="i/expressions/face-icon-small-smile.gif" border="0"> And that's it. That's who I am, I always find the better thing to look at, the good news first. My friends and family have always asked me, how do you cope with knowing you're going to die young? My answer has always been <i>'I just think, I'll never have to look in the mirror and consider getting a face lift'</i>. So that is how I'll cope still. I apologize for the LONG post. I just really needed to let somebody know how I feel, and what's going on in my life. Mmmm, Venting. Okay, well I'm gonna head to bed. Just know that everybody has their down moments, and it's the up ones we need to think about. 'Night All!Alli
Alli - I take Xoponex too. I was put on it this year because Albuterol causes my heartrate to race. I was told by a pulmonologist and respiratory therapist that you are not supposed to take Xoponex less than 6 hours apart - meaning ONLY 2-3 times a day! Also - it comes in 3 strengths - my doc put me on the 1.25mg and it didn't help lower my pulse. I went to the 0.63 and boy did it make a difference - but the lower dose didn't change how long the medication lasted (like it didn't wear off earlier). Anyway - I can get by without a Xoponex treatment for 8 hours. The problem is - I was recently hospitalized for 2 weeks and the docs wanted to be more aggressive with my treatments - so they began giving me the full 1.25 dose every 4 hours - I couldn't handle it and my pulse was racing, I was anxious and shaky. Anyway - I made them put me on my normal dosing and went back to normal, but now I can only last 6 hours without Xoponex. I was told that if you take a drug every 4 hours, for example, your body gets hooked on taking it every 4 hours, even if the medication is supposed to last longer. So - even though I used to be able to go every 8 hours between treatments - because the hospital screwed up my dosing, now it wears off quicker. I'm working back up to every 8 hours. The docs had told me there would be no problem with the dosing they were giving me in the hospital, but even one of the respiratory therapists said she refuses to give Xoponex to her patients less than 6 hours apart.Anyway - pleeeease talk to your clinic about this and see how it goes. I also take Atrovent with my Xoponex and it's long acting (I hate Advair - so I nebulize Atrovent). If you have questions - feel free to email me.Piperpmcp@comcast.net