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anonymous
10-18-2005, 10:36 PM
Just want to get an idea of when (at what age) did you or your loved ones lung issues first start becoming a major problem or concern. And what is their age and condition now.

Just thought it would be interesting for those of you that want to share.

Lilith
10-18-2005, 10:57 PM
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
10-18-2005, 11:01 PM
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.

anonymous
10-18-2005, 11:01 PM
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

ClashPunk82
10-18-2005, 11:11 PM
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.

anonymous
10-19-2005, 12:06 AM
Kait was diagnosed at birth, she was hospitalized at age 2 and age 6 and age 8, she cultured pseudomonas and then just about a year ago she cultured MRSA, she is now 9 years old and her PFT's are 108%.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

abloedel
10-19-2005, 12:57 AM
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

WinAce
10-19-2005, 12:59 AM
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.

abloedel
10-19-2005, 01:17 AM
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

anonymous
10-19-2005, 01:37 AM
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...

anonymous
10-19-2005, 02:17 AM
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

kybert
10-19-2005, 02:58 AM
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.

julie
10-19-2005, 03:39 AM
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.

anonymous
10-19-2005, 03:46 AM
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.

WinAce
10-19-2005, 12:34 PM
<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">

anonymous
10-19-2005, 01:04 PM
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

anonymous
10-19-2005, 01:19 PM
Some help for a newby. At what age do the doctors start to measure PFTs and FEV? And what do the measure? I have a gues but...

Thanks!

JazzysMom
10-19-2005, 01:40 PM
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.

abloedel
10-19-2005, 02:32 PM
<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

JennifersHope
10-19-2005, 07:13 PM
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..

Emily65Roses
10-19-2005, 07:31 PM
The doctors never confirmed that for me... that the MRSA led to the pseudomonas moving in. But I never had any pseudomonas troubles until after the MRSA came and went. So I may be wrong, but I still feel like one led to the other. But no, I haven't cultured MRSA since 01.

JennifersHope
10-19-2005, 07:43 PM
Thanks Emily.. I appreciate your response..as always... I guess it is a waiting game to see.....

Fun Fun Fun......

Jennifer

JustDucky
10-19-2005, 11:06 PM
Hmmm...that's a good question as I have only been recently been diagnosed with CF. I believe that I started having issues when I was younger, school age when I tried to run in track, I just couldn't keep up with the other kids. I felt out of breath. As I got older I was diagnosed with asthma and hospitialized at least once a year with asthma and or pneumonia. What finally got the docs suspicous was when I started culturing bugs like pseudomonas, cepacia, staph and even maltophilia as well as intolerance to fatty foods at all. Not to mention the sweat tests. I am 33 years old right now. For those who don't know me, I am vent dependent because of a rare type of muscular dystrophy that led to early respiratory failure (lucky me, this is also inherited) At first, the docs believed that the pathogens were related to the ventilator itself, but then these other pieces of the puzzle started to come up. So...now they are finally treating the pancreatic insufficiency as well as using supressive therapy on me (TOBI) 3 years ago, my PFT's started to drop, prior to that, they were decent, 80-90 I believe. Prior to being vented, I was below 20%, unfortunately I am not eligible for a lung transplant because of my neuro disease. My CF disease isn't really that bad, what really caused my pulmonary decline was the neuro disease, it literally caused my respiratory muscles to weaken to the point where I couldn't breathe on my own. Having the two together makes it like a double whammy. I have been in the hospital alot over the last 3 years, especially this year for IV's and such, the cepacia usually is the one that wreaks havok on me. But, I just hang in there...if it is a good day, then I take full advantage of it.
Hugs Jenn (Cepaciagal)
33 years old