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Hospitalization due to Lung problems
- Thread starter anonymous
- Start date
I never had an issue until I got to be around 12 years old. That's when I had my first hospitalization and things started coming into perspective. As of now, my lung function is hovering in the upper 60's, so I can't complain. I was in the 80-70 range not too long ago, though.
Emily65Roses
New member
I always coughed, but my lungs weren't an issue until I was 16. That's when I got MRSA. And after the MRSA was gone, I was left with several pseudomonas. I still say the MRSA kind of opened the door for the pseudo. But either way, the MRSA was what started my lungs being a pain in the butt. Now I'm 21 and my PFTs are right around 70% usually. So I only lost about 30% in 5 years. Not bad.
My twins were diagnosed at 3 months due to lung problems. They have had long hospital stays from that time onwards, their longest being 5 months. Their pfts have been as low as 29 but their norm is between 44 and 50. I was told that at school age they had less than half of their lung function. They are now 11 years old.
Mel
Mel
ClashPunk82
New member
I was diagnosed at 6 weeks because my older brother had it. I was in and out of the hospiyal most of my life but my lungs became a huge problem when I was like 19/20. My lungs now function at around 20% and I am being listed for a lung transplant. My older brother has had more lung issues than me his whole life but he now needs a transplant too. But he has decided against it. I however am going to go through with it.
I have had lung issues my entire life....but only hospitalzied 3 times for them, when they finally at age 36 figured out I had CF. When I got over my 4 lobe pneumonia in January of this year my PFT's were in the mid 70s, but I got something this summer and just finished a round of iv antibiotics...while I was on them my PFT's were in the 40s, but now seem to be stablized around 55%.
I'd be interested in knowing how much lung function loss people have experienced on average with each significant infection.
I culture Staph A and Enterobacter. They suspect I have Pseudo as well, but I have not cultured it since we begin checking that in April of this year.
Amy
36 w/CF
I'd be interested in knowing how much lung function loss people have experienced on average with each significant infection.
I culture Staph A and Enterobacter. They suspect I have Pseudo as well, but I have not cultured it since we begin checking that in April of this year.
Amy
36 w/CF
I've had intermittent problems since... 4 or so (at least, that's the first time I remember being hospitalized).
Five years ago was a turning point, when I got so ill I almost died. My FEV1 score was at almost 60% then, after staying the same for many years, but went downhill ever since (about 25% now). Since last year, I've been on IV antibiotics almost every month, sometimes several times a month.
Five years ago was a turning point, when I got so ill I almost died. My FEV1 score was at almost 60% then, after staying the same for many years, but went downhill ever since (about 25% now). Since last year, I've been on IV antibiotics almost every month, sometimes several times a month.
I have been off the IV's for two weeks now....this is the longest I have been off the antibiotics (oral or IV) since Feb (done the IV's twice, but trying out different orals to see how they work on me). I guess I'm lucky because my sensitivty screenings only show my cultures resistant to 4 antibiotics, but I'm concerned to have lost so much lung function this summer. I have always been sick in the winter months...I am hoping I can make it at least a month with no antibiotics, but I have been sick now the last two days...not coughing (relatively) much yet, but sinuses are going crazy, so I'm sure it's only a matter of time.
I wish I would have known what my PFT's were prior to my last hospitalization in January....it would be interesting to know how much lung function was lost then.
Amy
36 w/CF
I wish I would have known what my PFT's were prior to my last hospitalization in January....it would be interesting to know how much lung function was lost then.
Amy
36 w/CF
I was diagnosed at birth and have had gastro problems from the start, but I didn't start needing tune-up untill i was in the 7th grade (i was about 12 then, i'm 19 now)
My lung functions run about 45%, and I usually end up on IVs about every 3-4 months. In fact, i'm feeling rather junky at the moment, and it's been three months since the last one, so i'll probably end up going in for anitbiotics soon enough...
My lung functions run about 45%, and I usually end up on IVs about every 3-4 months. In fact, i'm feeling rather junky at the moment, and it's been three months since the last one, so i'll probably end up going in for anitbiotics soon enough...
My lungs didn't become an issue until i was in the fourth grade. From that time on, I needed IV antibiotics one a year. My lung function fell steadily from middle school to high school and into the first two years of college. I caught an AWFUL infection in the summer of 2003 which caused me to lose most of my lung function, i spent 3 weeks in the hospital on my deathbed, and was the catalyst to me getting evaluated for a lung transplant. I was hovering around 30% when I got evaluated and over the course of the next year fell to about 20% when I received my transplant. So it was a steady decline for me since the 4th grade until i was a junior in college.
Margaret
Double Lung TX 11.11.04
Margaret
Double Lung TX 11.11.04
well i guess my lungs were always a 'concern' right from the word go in the sense that if i didnt have aggressive treatment, my pfts would easily go down, but they were certainly not a problem. my pfts were always above 90% in primary school, sometimes they reached 110%. people wouldnt of even known i had cf if i didnt tell them. heck, i wouldnt of even known if someone didnt tell me lol!
the problems started when i went to high school [thats 12/13 in australia]. so many people came to school with all sorts of bugs and of course, i caught every single thing going around. i started to get hospitalised about 3 times a year. best fev1 slowly went down. it was hard to keep up with everyone else physically. i was really starting to 'feel' cf. at around 17/18 i had a major flareup of aspergillus [and continued to have them till last year]. that set me back even more. im now 22 and hover around 60% . while my lung function is reasonable, the rest of my body hasnt taken too kindly to cf. i feel like a 70 yr old.
the problems started when i went to high school [thats 12/13 in australia]. so many people came to school with all sorts of bugs and of course, i caught every single thing going around. i started to get hospitalised about 3 times a year. best fev1 slowly went down. it was hard to keep up with everyone else physically. i was really starting to 'feel' cf. at around 17/18 i had a major flareup of aspergillus [and continued to have them till last year]. that set me back even more. im now 22 and hover around 60% . while my lung function is reasonable, the rest of my body hasnt taken too kindly to cf. i feel like a 70 yr old.
Mark's always had lung issues, pseudo's, but he has never been hospitalized for lung involvement and amazingly has never had any IV's related to his CF (only related to studies where he's been overnight for tests and research). His lung function was down at abou 78% a few years ago but it's maintaining at 87-92% right now and has been for the last 4 years.
My son was diagnosed with CF when he was 18 months old.It started as a bad case of cold that lessted for 3 months.He was hospitalized for 2 out of thos 3 months with 3 weeks on and of in ICU. After he was diagnosed he did much better with 1 hosp. for tune-up when he was 7 years old and once when he was 9 or 10 due to a reptured ulcer.Since then he is doing exelent with PFT`s in the 90s.My dauther was diadnosed when she was 1 year old due to her brother having a CF and her poor weitgain.She was hospitalaizd 3 times all due to her not gaining weight witch afected her PFT`s.Now she is doing great.On her lest doctor visit her PFT`s are in the 95% and she gaind about 30 to 35 lbs. in 5 months.
<blockquote>Quote<br><hr><i>Originally posted by: <b>abloedel</b></i><br>I wish I would have known what my PFT's were prior to my last hospitalization in January....it would be interesting to know how much lung function was lost then.<hr></blockquote>
Ask the docs!
I did, recently, and found out what mine have been for the past few years. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ask the docs!
I did, recently, and found out what mine have been for the past few years. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am 28 and my PFTs are in the 70s. I have never been hospitalized or on IV antibiotics. I do get frequent sinus infections that can go into my lungs, but they are usually cleared up with zithromax, etc. I do not do the vest or CPT. I do exercise - yoga (not very lung active), and I am active with my son. My father put me in swimming at age 9 after CPT became a horrible fiasco each time we tried to do it. I think I was also given the equivalent of a nebulizer in the early 80s but I refused to do it too. I was VERY strong willed. The swimming had to have played a huge role in my health and keeping my lungs mucous free. I went three times a week, very serious (USS swimming) practices until I went on to swim in high school. I was the captain and a state contender, so it worked out well. In college, I did aerobics to keep my lungs clear. I have let my fitness fall to the wayside - which is bad, becasue I think right now I am coasting on good luck. Hopefully good (as good as CF goes) genes, too.
wanderlost 28 W/ CF
wanderlost 28 W/ CF
I was diagnosed at 7 & remember at that age having PFTs done. I did have a few hospitalizatioins throughout my childhood & only a couple in my teen years. Most have those could have been avoided (probably) had I done my treatments. As I got older I still didnt do treatments regularly until this year which scared the hell out of me. I truly didnt acknowledge the difference in how I felt with and without them. I also wasnt chronically bad until this year. I have had episodes over the years, but everything was an acute situation where I bounced right back (more or less). Now my problems currently could just be CF progressing, a virus that triggered everything or lack of treatments over the years or a combo of all. All I know is that until age 37 I had it pretty easy compared to many CF patients. I was able to enjoy a fabulous pregnancy & work full time during it. I have a beautiful & healthy daughter & in order for me to enjoy my life with her now as well as my husband I just need to focus on what I was able to put to the side before. Everyone is different as you will be told time & time again. I lost a few friends with CF as a kid, but I also know just as many or more now that are adults with spouses, careers &/or kids.
<blockquote>Quote<br><hr><i>Originally posted by: <b>WinAce</b></i><br><blockquote>Quote
<hr><i>Originally posted by: <b>abloedel</b></i>
I wish I would have known what my PFT's were prior to my last hospitalization in January....it would be interesting to know how much lung function was lost then.<hr></blockquote>
Ask the docs!
I did, recently, and found out what mine have been for the past few years. <img src="i/expressions/face-icon-small-smile.gif" border="0"><hr></blockquote>
Unfortunately, have not ever measured my PFT's until this year when it was discovered I had CF. I remember when I was 10 or so doing some PFT's, but I can't remember what doctor did them; neither can my mother.
Amy
36 w/CF
<hr><i>Originally posted by: <b>abloedel</b></i>
I wish I would have known what my PFT's were prior to my last hospitalization in January....it would be interesting to know how much lung function was lost then.<hr></blockquote>
Ask the docs!
I did, recently, and found out what mine have been for the past few years. <img src="i/expressions/face-icon-small-smile.gif" border="0"><hr></blockquote>
Unfortunately, have not ever measured my PFT's until this year when it was discovered I had CF. I remember when I was 10 or so doing some PFT's, but I can't remember what doctor did them; neither can my mother.
Amy
36 w/CF
JennifersHope
New member
I have always had lung infections starting at two weeks old ( that was my first hospital stay).. I never had a sputum culture growing up because they didn't know I had CF. My first cutures were negaitive then I tested positive for Pseduo at 30, it went away and came up a few other times, My last culture was MRSA positive..only (which freaken floored me MRSA ick) I am currently being treated with Zyvox for it.. almost done. I have heard conflicting stories on if I wil actually get rid of it, but my doctor told me yesterday he thinks I did/will.
I have since Nursing school been in the hospital every three months for IVs which is NOT my norm... I think the stress of school has taken a toll on me but I will rebound when I am done. My baseline PFTS are in the 90s. When I was just sick they were down... but they always go back up. My last PFTS they are not counting cause I coughed through the whole thing...
Anyway, doing better.. and hoping not to be hospitalized for a long. long time....
Hey EMily.. you said that culturing MRSA was the start of the downfall of your lungs???? Do you still culture the MRSA???? I am so hoping that this isn't the start of a bunch of crap for me.....I know each of us is different but I was just wondering.. your experience.
Jennifer 33 W CF and Addison's..
I have since Nursing school been in the hospital every three months for IVs which is NOT my norm... I think the stress of school has taken a toll on me but I will rebound when I am done. My baseline PFTS are in the 90s. When I was just sick they were down... but they always go back up. My last PFTS they are not counting cause I coughed through the whole thing...
Anyway, doing better.. and hoping not to be hospitalized for a long. long time....
Hey EMily.. you said that culturing MRSA was the start of the downfall of your lungs???? Do you still culture the MRSA???? I am so hoping that this isn't the start of a bunch of crap for me.....I know each of us is different but I was just wondering.. your experience.
Jennifer 33 W CF and Addison's..