Unneccesary Cleanout!

[anonymous]

I wanted to vent and get everyone's thoughts and opinions on this. Sorry if it is much to read, there's a lot to say!

In June of 2004 my PFTs were great, FEV1 of 87 and FVC of 94%
Since then they have been slowly declining...
March of 2005 I was down to FEV1 of 64 and FVC of 91
In July 2005 I was back up to FEV1 of 73 and FVC of 96
Only 2 months later, in September my numbers went down again to FEV1 of 59 and FVC of 82

At that point my doctor recommended (and somewhat demanded) that it was time for a cleanout.
Reluctant of course, I delayed as much as I could, came back at the end of September and did 1 more PFT
FEV1=73 and FVC of 93.
Doc' still recommended that I go in for a cleanout and I guess by then it had been in the back of my mind for over a month that I had become more accepting of it. I agreed. I went in the first week of October. I had a PICC for 2 weeks and mid octover came back for PFTs after the treatment was done....

FEV1 of 65
FVC of 88

I was furious... My PFTs prior to cleanout were HIGHER than afterwards, I felt like I had spent time in the hospital an inconvenienced myself and my family for 2 weeks for nothing. Ok, as if this was not bad enough... I went on ADVAIR 500 for 2 weeks...No medicine except advair, and my enzymes...Beggining of November my PFTs were FEV1 79 and FVC 90. At this point I am 98% sure that the cleanout treatment was not necessary!!! It just makes me so angry to think that I was in the hospital for the first time in my life and it was for nothing.

I got to the end of this and I guess I am really not sure what my question is...Maybe this was more of a vent than anything else... But what do you all think?

Thank You.

In early october I was hospitalized for the first time (I am 20+ years old) and had my first clean out. This was quite the experience for me since I normally am never sick and never

 

[Purplelungz]

maybe he was looking at the continious decline and that one pft test was higher because you were having a good day? in any case i would ask why and demand him to explain why he wanted to do the cleanout first instead of trying advair or even breathing treatments at home (are you one albuterol or ventolin). if your not on either of those i would ask to be put on one even if its to use on a just as needed bases. i just assumed you arent on t a breathign treatment as you said you werent taking any meds other than advair or enzymes.
just on my guess i would say the the doctor was looking at the continuous decline even though that one pft was higher it could have just been a good day. this has happened to me before. but even though my pft was a little higher than when i got out, when i got out i felt alot better and for a longer time and my pft did go back up a little later. just my guess though.

 

[JazzysMom]

It is possible that your problems were more airway restrictins then infection. Did they do sputum cultures during any of the times that your pfts were declining? This year was an awful year for me regarding airway restrictions moreso than infections, but I still was on antibiotics a lot to avoid the risk of infection while my airways were closed down since I couldnt cough anything up. I would be upset also. I use to do "voluntary" cleanouts until I ended up in the hospital a few times in the same year after going in for a clean out. I realized it was a fruitless effort then. Now I wait until my sputum & overall health dictates hospital stays. So what it comes down to is did the doctor want a cleanout solely on your pft decline or did xrays, bloodwork & sputum cultures show something also?

 

[anonymous]

I have to chip in here because I've had the same scenario. I periodically get sputum cultures but never asked for copies of them because that's the doctors job (so I thought) to keep up with that stuff.
Well, after feeling crappy for over a month, I had home IV's and really felt no different after 2 weeks of them. I decided to ask for a copy of the sputum culture, I'm not sure why--I guess just curious. Well, low & behold the IV meds I had used were ones that my pseudomonas was resistant to, so that was a waste of time & money!<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
It does get frustrating sometimes, that's for sure.
After being angry for awhile I realized that doctors aren't God and that they are human just like we are, so now I try to stay on top on things and be more pro-active with my care.
Hope

 

[anonymous]

This was done solely on my PFTs.
My xrays are excellent... I sound 100% clear (this is what every nurse/doctor/resident tells me).
What is worse, is this is a doctor who left the hospital as I was going into this treatment. He had been my doctor for a long time (8+ years) and I was not sure if he was doing this just to cover his own behind? The new doctor I have obviously is not going to tell me the treatment was worthless but hasn't exactly said otherwise either.

I am not on any other breathing medications. I do produce sputum and it is greenish (but that has been going on several years). Overall I feel great and I live a normal life.

 

[Diane]

This may be something no-ones though of, or experienced before but....I'd be willing to bet i cant be the only one this happens to................................... Usually when i used to go in the hospital for cleanouts ( i now do them at home) i wouldnt notice the actual results in my pft's for a while. I'd feel better , but it wouldnt reflect in my numbers, which is aggravating since most of the time they didnt want to send me home till my numbers went up. Lo and behold a few weeks later they'd be back up long after treatment was stopped. It's almost like a delayed reaction. I doubt your cleanout was a waste of time, your numbers may just not have reflected well in your pft's. The good thing is.... your numbers are back up ....time to celebrate!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Emily65Roses]

Keep in mind doctors aren't perfect. They might admit you and give you a PICC and try IVs but that doesn't mean the first (or every) try will automatically work. Maybe you need a different med. I know it sucks to have gone through it for what seems like nothing, but we all do it one time or another.

 

[supermanfan]

Well all I can say is that regular cleanouts on me when I was younger was what kept me healthy all those years.

No, doctors aren't perfect... maybe trying the cleanouts is the first choise a doctor picks because it's the less invasive rout... sometimes it won't work; everybody's body responds differently, and it's also always changing.

As far as the one who was on IV meds and found out the meds weren't working due to resistance... I say shame on the doctor or lab for not acting on that information.

Feel free to rant any time <img src="i/expressions/face-icon-small-smile.gif" border="0">