following treatments/ severity of CF

[anonymous]

While skimming another topic on the adults section, it was brought up by someone that as long as you do your treatments and take care of yourself you will do "amazingly well." I believe it was Coll who responded that the nature of CF does not make this statement true in all cases. She said that although she has always done her treatments and taken care to stay healthy, she is still often sick.

I also noticed during one of my daughter's hospital stays, some of the staff there commenting that "It's the ones who don't take care of themselves who often end up here." Although they were referring to older patients, teens in particular, I thought they were being unfair in their statements.

My daughter has been in the hospital five times before the age of two. My husband and I exhaust ourselves everyday making sure that all treatments, CPT, tube feeds, meds are done! Yet she still has a hard time. I hate to think that in the future people are going to assume that she (or we) do not follow her treatments.

Are there others who do their best to keep healthy, but still frequently end up in the hospital?

Maria (mother of three daughters, the youngest Samantha w/cf)

 

[Emily65Roses]

Well let's see. I have been on nebs every day of my life since I was 9 (this was when Pulmozyme first came out). I had a year or two in high school where I'd skip it sometimes (once a week max), and I had a couple episodes of smoking weed at parties. But other than that, I've been very good about my meds. And because of pseudomonas and staph and the MRSA I had when I was 16, I still find myself annoyed with being sick. Don't get me wrong, I'm not looking at a tx yet, but since I was 16, I've been in the hospital about twice a year. So to answer your question... yes. Heh.

 

[NoDayButToday]

Yep, Maria it was me who posted that initially, and I was kind of perplexed by the lack of response initially.
I've been on nebulizers for as long as I can remember (in reality, it was around 4 I started them). I've taken puffers and pills before that. My mom was amazing about ensuring all my medicines and CPT got done every day, and I learned from her. So basically my whole life I've been compliant. Yet, I've been on IVs four times in the past year (yep, it's been a rough year- hopefully '05 holds better), and before then, my health had been slowly declining.

It amazes me how those in the healthcare profession who have seen CF firsthand can still blame patients. I'm sure in some cases it's justified, but it certainly isn't in mine, and it's hurtful to say that it is. Yet several people I've encountered have implied or flat out said that I must be non-compliant, how else could my health be explained? When this happens I cry and get very upset. When the people who are supposed to be caring for you want to blame you for the severity of your illness, it is very very disheartening, and it does happen. It shouldn't be an additional burden for CFers to have to prove or emphasize that they're doing their treatments, but I've had to do so quite a few times in my life.

 

[anonymous]

coll, i couldnt have put it in a better myself, you r sooooo right on the target!
samething happens to my daughter traci, i hate when they blame her she too gets very upset . and she never misses anything she is so faithful! helps when moms behind her,....lol, i just wanted to say how right you r on that!<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

hi,
i feel exactly the same about the eating issue. i try to eat and eat to the point where i get nauseous cause i eat often when i'm not at all hungry just to gain some weight. well, the healthcare profession all my teenage years thought i had an eating disorder!!! are you kidding me?? do they not know being skinny is often a part of CF and if i say i'm eating, i'm eating!!! my docs even threatened to leave me at one point because i was not complying and eating to keep myself healthy and they couldn't do anymore if i wasn't going to try to gain weight!!! now, they treat me better about eating (perhaps because i've gained some weight), but i can't beleive how insensitive some docs/nurses are. don't they know anything about cf??? urgh!!!
<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

SR

 

[anonymous]

Sometimes I believe the severity revolves more on what you culture and when. I also tend to believe some people are just pre-disposed to culture things earlier in life and they may be in for a harder time. Does that make sense? How can it be that some babies culture pseudomonas at six months when others don't culture it until age ten or more. I know doctors will say, "Oh, but we culture so much more frequently now, so we catch things earlier." But, I don't believe that makes up for the significant difference.

It seems that those who have the "classic symptoms" of CF from birth or soon after may have a harder time. However, these babies are also lucky that they may get diagnosed earlier. Therefore, they also begin to receive care earlier which helps them in the long run.

It's such a MYSTERY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Maria (mother of three daughters, the youngest Samantha w/cf)

 

[NoDayButToday]

Maria, SR, and Traci's Mom,

It is quite a mystery what indicates severity (even among siblings with the same mutations, doctors have found differences in severity, so some are seeing if there is a 'modifier' gene involved in CF severity- but anyway).

Just a curiousity question- did you (or your children) have meconium ileus? I know both Emily and I did, and though they say M. Ileus and severity of CF are not linked, I would be interested to see.

 

[anonymous]

Coll,

Samantha did not have meconium ileus. She always had a slight cough since birth, always rapid breathing - and ALWAYS bright neon green, slimy stools. She was constantly nursing and at two months she began stooling about 10-15 times a day. Luckily, she was diagnosed at three months. She started Pulmazyme at 4 months, and TOBI at seven months after culturing Pseudomonas at six months.

Your comments on the other post about treatments/severity really struck me because I worry a lot about Samantha's future. I don't want her to feel that we (or she) are not doing enough. But, in reality I often wonder if we can ever do enough. CF is such a strong opponent.

Maria (mother of three daughters, the youngest Samantha w/cf)