need some advice...

[Princess76]

I was in hospital Feb 12 for a week then sent home for home IV's for another week. Home care was a complete disaster...long story, I had to continue my IV's for another week. Three weeks of IV's and now almost two weeks off I'm still sick. This NEVER happens to me. I'm usually in for my 12-14 day "tune-up" and then good for the next 6-12 months. I go back to clinic on Tues. I don't want to go back in, especially with all the needles, The PICC, and bordem so fresh in my mind. I'm also so sick of being sick! I'm tired ALL the time. A Grocery trip is exhausting. I can only go out once a day..either it be shopping or taking my dog out, or go out with friends later in evening or night. No way can I do both, which is so not like me. But here's where I have the problem....I don't feel as "sick" as I usually do and not sure if I'm sick enough to go in, but I know I'm not getting better on my own. Do any of you have this battle with yourselfs..."to go or not to go?" What do you think........

 

[LindseyRose]

I am in constant battle with myself over this issue. I tell myself over and over that I am not sick enough for IV's, then I end up being so sick that I end up in the hospital when I could've just done home IV's. It sounds to me like you should go back on them if you can't live your life like you normally do. I would suggest having them do a sputum culture if they haven't done one since you've been off IV's, perhaps your bugs have changed and that's why you weren't responding to the antibiotics. I once had a two week tune up turn into a two month tune up because I kept culturing different bugs.

 

[Princess76]

Thanks LindseyRose!
It's funny cause when debating wether or not I should go in, that should be my key clue...since, when I'm well, the hospital doesn't even cross my mind. I just hate "admitting" I'm sick, or I'm always scared I'm gonna go in and make a fuss when there's nothing wrong.

 

[maple]

Hi Princess,

Go in to clinic. A similar thing happened to me last year...I was sick for about a month and kept convincing myself I was OK and that I could fight it off. And we had a ski trip planned that was only a few weeks away with all my friends, and I didn't want to miss that. So I didn't go in...I ended up not being able to ski, I laid in bed in the chalet we rented for an entire week, 'cause I had no energy and I couldn't even get out of bed and go downstairs without it taking all my effort just to get downstairs and lay on the couch! It ended up I was sick for 4 months, and took 2 weeks in the hospital and another 2 weeks of resting at home before I started to feel better. That episode cost me about 30% lung function that hasn't come back. But I've felt good since then, and I made it on this year's ski trip. I went up that mountain and flew down as fast as I could and felt great...none of my friends could keep up for the rest of the week!

Richard
30 w/cf

 

[Lanni]

I have learned over the past few years Its ok to go even if your not sure if your sick enough. If you don't feel like yourself then you probably need more iv meds or even just change in antibiotic. Every once in a while you just need those extra meds. Try not to let it get you too down. I'm not say I'm the happiest person w/ CF and I never get down. but The more depressed you get over it, your gonna feel more tired and not want to do anything. Its a bummer but I'm sure all will go well. Good Luck!

Alanna 21 w/CFRD
Boston, MA

 

[Princess76]

Well I went into clinic and my stats are pretty low so I'm going into hospital for 2 weeks. I know it's for the best. I'll miss reading all your posts and look forward to readin them all later!

 

[maple]

But just think...you'll get great food for the next 2 weeks! I hope you get better quick! Being in the hospital sucks, especially if yours is anything like where I go and there's no internet for patients or anything to do accept lay in bed or pace the hallways. But it's better than what I did with letting it drag on and on trying to fight it off myself. I lost over 20 pounds by the time I went in. Take Care.

Richard
31 w/cf

 

[anonymous]

Well i'm still in hosp...just found out that there is a comp lounge. I'm glad I did come to get this over with...i've been here a week and looks like i'll be here for awhile. i don't have time right now to catch up on the posts but i should be back tomorrow. hope everyone had a good easter!

 

[amazinggrayce]

I was told today by my family Dr. that I have the beginning stages of CF.....My brother died from it when he was in his 60's...I juat turned 54. My mother also has CF, and she is 94!!!! Right now I am so scared I can't think straight...I remember seeing my brother pulling his oxygen tank, and always being so winded....I remember thiking that I never wanted to live like that....WOW...he died over 10 years ago.....Everytihing I have read so far is about young people with CF.....any advice?

 

[Emily65Roses]

Uhm, I would double-check your source. What you said about early stages, etc does NOT apply to CF. And CFers generally do NOT live to their 90s, etc. CF is genetic. Make sure you've got the right initials.

 

[NoDayButToday]

The reason you are reading mostly about younger people with CF is because the average life expectancy is only 32. Are you sure you are speaking of cystic fibrosis? I ask because I've never heard of a 94 year old with cystic fibrosis, the oldest was 70-something and died last year. How were you diagnosed?

 

[anonymous]

Amazing Grace, your post has left me truely amazed!! I am 53, my Chest specialist tells me if I keep up my health regime I shall certainly live into my 70's and maybe beyond, I was diagnosed in my late 30's and would be interested to learn how you have managed to date with your past bouts of obvious ill health. I too, have lost a bro[23] and sister [42] to CF. We all have diff. degrees of CF illness, and sadly it is usually assoc., to infant or younger adult deaths. If I can be of further help please feel free to email me at iswag1@xtra.co.nz
Cheers. <img src="i/expressions/wine.gif" border="0">

 

[EmilysMom]

I, too, am tending to think that Amazing Grayce has gotten her initials wrong and CF is not what she is thinking. (or was diagnosed with).
Grayce...recheck your diagnosis and come back and let us know please! We are all curious now

 

[anonymous]

Amazing Grayce, do you mean COPD? As in chronic obstructive pulmonary disease? It's more traditionally diagnosed in the age range you're referring to, and could be referred to "early stages" plus oxygen is a mainstay treatment for later stages. And, while many with COPD are former or current smokers, there is also a genetic predisposition that causes non-smokers to get it at as well. If so, do a search on COPD. My limited understanding is that COPD is treated with bronchodilators, steroids, oxygen, and in some cases, there are other treatments.