Getting used to a new way of life

[anonymous]

Here is the quick rundown: I'm 28, married, graduated from college, had a sister die from CF, and had to quit my career one year ago because I just couldn't get in all of my treatments and now can't get back to work because of continued illness.I've had pretty moderate CF and maintained at mid to upper 40% lung function for the past 10 years, had only a small handful of hospitalizations and home IV therapy, and lead a pretty normal life. My doc once told me that in his experience, he sees patients maintain for a long time, then it just takes one illness and bam, they decline quickly. Well, last December, I caught the flu - and that did it. For the first time ever, my pulse ox was in the 80% range, I was put on oxygen, and couldn't do the normal things I used to do - like walk up the 6 steps to my apartment. Well, I knew I'd get better and I have been, a little bit, my pulse ox is up to low 90s and sometimes I can get it to the upper 90s (I used to be 98% all the time). Well, I recently took my PFTs - now granted, I'm still weak from my latest sickness, so I didn't think it'd be great - but it went all the way down to about 30% - eligible for lung transplant. I also just read in my medical records from my latest hospital stay that I have advanced stage CF - this is new to me.I haven't been able to leave my home for 6 months because my system is too weak to risk exposure to germs. I had to miss my sister-in-law's wedding (which I was to be a bridesmaid in) last month because I couldn't travel or be around people. I don't have a single friend anymore because go to bars or smoke and I can't be around that, I don't know anyone with CF, no one else in my family has CF. I'm just feeling down. My life feels like such a waste now. I can't work, I can't keep up my home, I can't do the things I was doing just a short time ago. Now - I am hopeful - I know I can get my health back up a bit and can probably get my PFTs back up, I'm also getting my energy up. So maybe I'll get back to how I was, but now I feel like it has really suddenly hit me that I have this life threatening disease. I also just earned a scholarship for a medical transcription training program so that, once I pass, I can hopefully work from home. It has nothing to do with what my career path was, nor what I went to college for, but at least it's something.How do you cope? My emotions are so unstable now. I used to be perky and positive and now I can just suddenly cry at the drop of a hat. I can't get fears out of my head. I'm angry and frustrated. I get mad when my husband says to think myself healthy and that he thinks I'm causing myself to be sicker than I need to be because I'm get fed up and frustrated with my health. I've had family members blame me for getting sicker, and I'm mad because I now realize that aside from my immediate family - the rest of the family has no idea what CF is all about. I hate that my entire day is now focused on nothing but CF - from taking multiple medical treatments throughtout the day, to see a nurse daily for breathing therapy, to trying to exercise, to constantly being plugged into one of the many machines next to the side of my bed. I can't believe that I'm 28 and feel like a 90 year old. I never thought I would decline like this - I felt like I had so many more healthy years ahead of me. But now I know life has quickly changed. I just don't know how to deal with this new way of life. My husband told me that his friend's wife was praying for me - I told him I didn't deserve prayers. It's my familly who has worked hard and sacrificed - they deserve the prayers. Now I have nothing to contribute to the world. Don't get me wrong - I don't feel this way all the time. I just have these moments every day where I feel like I am going to suffocate because I am so sad. This isn't me - I used to be the one to cheer everyone up. And I can't tell them when I'm feeling down because I don't want to scare them and I don't want them to worry about me.Anyway, I am so sorry to ramble. I just want to know how you cope with a decline in your health.

 

[anonymous]

I must tell you, reading your post was like reliving my own adjustment to the 'new way of life.' Everything from days filled solely with CF related stuff to having family members blame me for getting sick, man I was there! A little history: I was 31- was employed full time, at a job I loved- when I came down with a cold that turned into pneumonia. Not sure how much lung function I lost but after 6 weeks in the hosp, I would never be without supplemental 02 again. Doc's wants me to get on the tx list... Anyway, I had to quit my job and go on disability. Nothing quite like getting sick,go unemployed and feel useless, and having all the time in the world to think about it! Emotionally, I was a mess.It was at this time, at my lowest point (about 6 months into my disability) when my doc put my on anti anxiety medication so that I could sleep at night. I was riddled with anxiety. I also discovered my relationship with our Lord, and that helped get me through some of the toughest times.I went unemployed for about a year, and- for lack of a better way to say- it was like a switch went off in my head. I got tired of sitting at home doing a whole lot of nothing (except surfing the internet) and decided to look for a part time job- one that wouldn't interfere with my treatment schedule. I wound up picking up a job that I always wanted to have, but could never afford to take (low pay). But now pay wasn't an issue, and the job centers around one of my hobbies. I must tell you, it changed my life back to something I could recognize and relate to. My self esteem practically went through the roof! Heck, just being around other people made me feel more normal than I had felt since I got sick. I've been at that part time job for almost 2 years now, and though my health continues to decline, I think I've found what makes life worth living. And you will too, just give it some time. I think that when a person goes through a change of life such as this, there's a grieving process that needs to take place. Those near and dear to me, didn't understand this as they kept telling me to get out and volunteer or do something worthwhile. It turns out they had the right idea, but didn't necessarily allow me the time to grieve for my 'loss.' Don't get me wrong, I'd take my old life back in a heartbeat if given the option. I still miss it very much, but by the grace of God, and a very loving and supportive spouse, here I am. I know that you will get through this, it just takes time. I also discovered along the way, I had no time for those that blamed me or accused me of getting sick- I don't have much to do with them now.... and coincidentally, found some folks whose hearts were golden <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck and God bless and I hope sharing my story with you helps-Sincerely,Been there, done that <img src="i/expressions/beer.gif" border="0">

 

[anonymous]

Anonymous,I am 29 w/cf and my situation is similar, I have maintained steady for almost 9 years now I was diagnosed when I was 22 and through regular exercise have kept my health up. I have not seen the rough time that you are talking about yet, but I know that one day it will come. I do know people that just don't understand. For example I have a friend that thinks that as long as I ride my exercise bike everyday that everything is fine and that I shouldn't cough anymore. Whenever I am around this person and he here's me cough he always says like a smart ass "I guess your not riding your bike". The worst part about this person is that he tells me that he had a cousin and a friend die of CF when they were 17, and he still doesn't understand. He is just ignorant. Dave 29/wcf

 

[anonymous]

Hi, My case is quite similar to the first post. It took one sickness to turn my life upside down. Before that, my life was quite normal, and never thought about CF. Even didn't know much about it and never doing all these therapies. However, at 19 I got a cold,and thought it would go away as usual, but it didn't. It turned into severe pneumonia. Moreover, I cultured positive for pseudomonas. Then after, everything turned to the worse. My lung function started decreasing quickly and horribly. The infections became successive. CF became a daily nightmare. Similar to yours my system became vulnerable and everytime I try to get my life back and go to continue my college studies, CF takes the better of me and the infection goes worse and gets me hospitalized. I think there is no way back,that's it. I'm trying to adjust to my new life, but I can't and never will. I wish I died before reaching this nightmare. I don't know what to do, but life was unfair to me and I hate it as much as I hate CF. It is the worst disease on earth because it kills on all levels. Rami 21w/CF

 

[AbsintheSorrow]

I just want to say you guys rule. I'm still in pretty good health. In fact, for a CFer, my doctors see me as pretty frickin healthy indeed. But I think you guys rule for putting up with the sudden downward spiral. And even if you have a bad attitude about it, you still rule. Because no one really knows what it's like to be there until you are there. And I guarentee I'll have a bad attitude when I get there. Heh. But I have a question... I've never heard this "one illness" idea before. I've been in pretty good health the past 20 years (though it's gotten a little harder since I had MRSA at 16). Does it usually start declining pretty fast after one harsh blow by an infection or virus of some kind?

 

[anonymous]

I can certainly relate to what this whole post is about. I was devastated when i cultured b.cepacia 7 years ago and was sure it was the end of the road. I never thought that something like cepacia could happen to me, since i was so healthy, pretty much all my life . I never did any treatments, inhalants, or anything of the sort, wasnt hospitalized (except for my sinus surgery a year prior). BUT after i had my sinus surgery , i left that hospital sick and never got better. The constant coughing started, the lung infections, then the daily fevers,( never got fevers in the past) and when it became a major effort just to stand up and take a shower i knew something was very wrong, and finally they found the b.cepacia. I didnt even know what it was, but knew it had to be bad when i saw the look on my nurses face. I was hospitalized right away, and often after that, seemed i had to get used to a new thing in my life called iv's. Sitting in the hospital gave me a lot of time to think and realize my life will never be the same and i was sure i wouldnt make it much further. Things have gotten worse at times after that, because i thought after an iv treatment i would get back to near normal, so i still wasnt doing any vest treatments or inhalants. It took my bad hemoptysis to make me wake up to the fact how serious cf can be . I almost lost my life that, night drowing in my own blood and that opened up my eyes and made me realize the easy days are OVER. I started reading more and more about cf and got on this website and wow what a wake up call !! I now do my vest daily, my inhaled meds, and whatever else i can that will help. I even started oral glutathione because i felt as though my life were hanging by a string, and i always promised myself if i ever got that bad i would do whatever it took to help myself. Its scary adjusting to a new life that we didnt ever want, but nothing is impossible. Miracles happen everyday and i keep remembering that God performs miracles that modern medicine cant. We need to hang strong, and pray hard. Thank God for this board so we all know we are not alone in this.~Diane 39 / cf / diabetes / b.cepacia

 

[B]

It's been a while since I have been on this site and reading some of the post I am glad. but this particular thread hit really close to home with what i am dealing with now. I am 27, up until i was about 25, my CF did not phase me except for a treatment a day, daily meds and maybe 1 round of IV's every 18 months or so. I went through College in 3 years and had a very sucessful career for my age including professional designation. i spent a year traveling 100% for a fortune 100 company. And a VERY active social life. Then all of a sudden I couldn't do it any more. I had to quit a job I loved and took one I hated. My Pft feel from mid 40's to low 30's. It seemed like a constant struggle but I still managed to somehow work and keep a medium social life. But I stayed sick, on IV 2-3 times a year, tired all the time depressed thought I couldn't get any worse. My CF Dr told me I needed to start thinking about transplant. About a 6 months later, I met the met the "love of my life", Though attiude and his encourange met and alot of dedication I was finally able to get my PFT up into the lower 40's. The dr told me to quit thinking about Xplant now just to keep up what ever I was doing. I felt GREAT compared to what I had before. I could work and have a social life again. Then after dating for 10 months, my love and I were fixing to move in together, and he was killed in a tragic motorcycle accident. Again my health spiriled down. My lung functions hit low-to mid 20's but I countinued to work full time....I do not know how. I think it was more survival mode to keep my mind off from everything at that point. That was almost a year ago, I have continue to work, Struggling..Taking a alot of sick time. Though my PFT have climb back up to high 20's low 30's, my health "feel" worse that it has ever felt before. I have been on the xplant list since Feb of this year. I am having a very hard time coping with the fact that I can work or I can have a minimual social life; but I can't have both. I have always been a very goal oriented and very social person. My carrer has always been a very important part of my life, even if I hated the job; I took great pride of being completely independent. The good news for me is that I have worked hard enough that no matter how bad things get, I will still be able to keep my independets financially thorough diablility. (its actually enough to pay my house note and utlilties and basic living expense--yea wow!! I may hate the job but it does have an excellent disability plan.) But I am struggleing with the decison to go on disability and enjoy life now. I feel like doing that i am giving in and loosing a battle that have fought so hard for. Plus, if I do it now, I would have to sell the one thing that gives me my piece of mind which is my Harley. It's 75% paid for and I know if I sell it, I would never be able to afford another. When i do feel good the one this truely enjoy is riding. But by not selling, I must contiune to work until its paid for. and unless I find me a good sugar daddy (and sice I don't feel like extra cirricular activities i don't see that happening.) its going to be a several months. I really do not know where I am going with this post except to say that I relate. it has made me feel better knowing there are others out there who have had active lives and have had problems adjusting(that didn't sound right , Iwish you never had to experiance the decline in your activity. I hear to many CFer that never work or anything and I cannot relate to them) Just as it has made me feel better telling my story. thank youI wish you all the best. Brandy

 

[anonymous]

Your situtation sounds so familiar. My husband has CF (age 32) up until a year and half ago he was admitted into the hosp once every year - 2 years. In the last 1 1/2 years he has been in 6 times. His O2 stats dropped as well and now needs O2 around the clock. What a life style change, he went from playing hockey to huffing and puffing walking short distances. He has been out of work for a year and he is now having to apply for disablility. It has been an extreme change for both of us. We feel like things happened to dare fast, it's like he just hit a wall. I really don't have any advice, but do know you are not alone. It's so hard.

 

[anonymous]

I can sympathize with your declining health. I was pretty stable for about 8 years and now it seems like I'm on iv's more and more. But the one thing that I hate most of all is being blamed form my own condition. If I missed a treatment or something like that it is assumed that it has caused a decline in my health. I just want to be normal at times, but it's so difficult. Anyway, I understand what you are saying....

 

[anonymous]

Wow - I just want to thank all of you for replying. My husband even commented last night that he noticed I was in great spiritss - and it's been since I joined this forum. I've always avoided getting into the "CF community" (besides the fund raising stuff - I mean talking to other people with CF) because I felt so healthy that I couldn't relate to people with CF. Now I see that there are so many CF patients that have gone through the same thing - I feel so much better. My health actually turned around this week and my pulse ox is up and I'm feeling great! I'm also filled with hope again. I think this is because I feel so supported by all of you now. Thank you for having the courage to share your stories with me. Sometimes I picture my insides as a black cloud - all poisoned because CF affects almost all of our organs. I get on my treadmill and run as hard as I can to the point I make myself ill, mentally screaming for CF to get out of my body. I get so angry at this stranger that lives inside me. The hard thing growing up was knowing that I always had to hate a part of myself because it was CF. We're always taught to love ourselves - but how could I when there was this poison causing me to die a little everyday. But now when I picture my insides - I see my body fighting off that black cloud - and my body is working hard to keep me alive, so now I'm thankful. I know this must sound so weird but I'm sure you've been there. I wish I could just shove a vacuum down my throat and suck out all the bad gunk. What's even more frustrating is that everyday - I take these treatments and have postural drainage (which is literally beating my rib cage until I cough up this crap), do all of these things, just so I can breathe. And then tomorrow the mucus is back and it starts all over again. That is what gets me down - that no matter how much I cough - there seems to always be more!i realize this second paragraph doesn't match up with that first paragraph - but the thing is, yeah I'm mad, but I'm feeling better so for today - I'm winning <img src="i/expressions/face-icon-small-smile.gif" border="0"> And if I can just win a little more each day - even though I won't get it out of my body, at least there will be less of that black cloud.Piper