What is considered an acute drop in FEV1?

[anonymous]

I have MRSA and multidrug-resistant P. aeruginosa, and my FEV1 dropped 25.15% down to the 47 percentile, and the doctor did not hospitalize me, even despite my concern. He just gave me TOBI and Cipro, which independantly are useless against my flora, and together proved equally worthless. I asked for Zivox and he would not give it to me. So about a week an a half later I ended up in the hospital.

What do you consider a acute drop in FEV1 and is there a standard by which the protocol would be to hospitalize a patient?

I am looking for your personal perspective, and also if anyone know if there is any official documentation on this, that would be awesome.

Thanks.
Grendel

 

[kybert]

in my opinion, a drop of 15% or more should warrant iv's. unfortunately, lots of doctors let it drop far too low. a few months back i dropped 20% and my clinic did the ole 'tob and cipro' bull despite me protesting about it. of course it didnt work and they only just recently decided to put me on iv's. because they left me in such a poor state for months i have never been the same since. oral and inhaled meds just dont work well for major infections. they should be used for the minor ones.

 

[alwaysursamor]

Mine Dropped 4 points 58-54 and they put me on iv for 2 weeks and
cipro for two weeks now my function is 69.<br>
<br>
If you think you should have IV tell them they can't tell you no.
We know our bodies better then anyone.

 

[coltsfan715]

Usually by the time I have seen a drop of 10% I am already in the process of being admitted. Actually 10% is the most that my PFTs have dropped in one time and they immediately admitted me.

Lindsey

 

[kybert]

wow i wish i had your doctors!

 

[NoExcuses]

.

 

[Diane]

I go on iv's usually when i request them. Most of the time i request them without doing pft's, we just go by how i feel. If i feel feverish and crappy and have a noticable worsened cough or lungs feel crappy then i call my nurse and usually they set up for me to have home iv's. Most of the time the dr. wants me to go in and do pft's but i dont always want to do that when i feel so crappy and ask them to give me a few days on iv's first and then i'll go and give them a spirometry reading, when i start to feel human again. I generally do not get admitted unless it is for a problem they dont want handled at home ( like bad hemoptysis). I usually refuse to go in the hospital since that is the worst place for me to be when i am sick ( Lord only knows what other "things" i may pick up in my weakened state). If however i do have to go in, i get a box of alcohol swabs and go on a wiping spree. I wipe everything down with alcohol that i touch and even those things i dont touch, just in case .With a drop of 25% you'd have to be feeling that ( i can feel less than a 5% drop), i would insist on iv's at that point be aggressive about it. This is YOUR health they are playing with, and i myself wouldnt want a drop like 25% taken lightly.

 

[Grendel]

Amy,

With the quack doctor I had, and my condition at the time, I ended up having to driving to CA to get managed and hospitalized by the USC team, when I walked into USC hospital my FEV1 had to be in the 20's. Despite USC's best efforts in the hospital it has been months since my discharge and my FEV1 won't go above 48%, which means the loss I sustained is likely permanent, and this very much changes my mode of management, as now I am that much closer to the transplant list FEV1 threshold. Genuine fitness is not an option for me anymore, I exercise just to keep my health from deteriorating and have to watch my SaO2 scores when I am active. I know we CFers deal with worse FEV1 scores, but I should not have to deal with these adjustments and new worries on account of a crappy doctor. I would be fine if I was at fault or if nature just hit me with a bad infection, but that is not the case.

MY NEXT QUESTION FOR EVERYONE IS ...

I want to sue this doctor for his negligence and my permanent loss. But I have two problems: A) My current CF Doctor does not want to judge another CF Doctor for either for fear that he will lose his precious CF Foundation status, or because of that silent fraternal order of a**hole doctors thing, where they won't critique another for fear of being critiqued, or worse being sued. So I have to find a doctor (preferably CF) that would say this level of care was inappropriate given my medical presentation. Although my current CF doctors "agree" they won't document or certify their position. My other challenge B) is that there may not be a standard of management for this type of situation. Sure there is reasonable and unreasonable, which I will argue, but the CF Foundation who certifies or sanctions these doctors (good and bad) has no guideline that I have been able to identify. Consequently, if this goes to court, maybe the event will inspire the powers that be to create a standard, where if your FEV1 drops a certain percentage then one goes immediately into the hospital (receive IV care), the burden of risk and responsibility must be signed off by the patient. That would work for me.

How about you all? Should there be established a protocol for this type of situation, and do you think the legal system is the only way to impose such a standard? When FEV1 scores are low, and for them to drop, there is no reason AGGRESSIVE care should not be administered, particularly when resistant bacteria is within the patient's recent history.

Thanks,
Grendel

 

[NoExcuses]

.

 

[Grendel]

NO ... Rao saved me from the quack that neglected me. After my scores initially dropped, and I had suspected (after about +7 days) that the meds he prescribed (TOBI and Cipro) were not working, I had to convince the bad CF doctor to let me go in immediately for a PFT. Upon learning the my FEV1 score dropped down another 21.01% placing me in the 37 percentile for my age/weight/height. Of course they were willing to hospitalize me then, but I told them no way, not with the extremely poor judgment they exhibited to that point. So I drove to USC 12 hours later, and Rao took care of me, but even with his master skills, and he is a great doctor, I did not end up with a FEV1 >48 percentile.

Also, I was and am my own advocate. I think I am Dr. Rao's biggest pain because I consistently require details and explanations for everything, and I can be respectfully argumentative. I told the original doctor who put me in this state, once my scores dropped the initial 25.15% that I should be hospitalized, and if not -what are the criteria for hospitalization? I also strongly advocated that with my MRSA I should have at least gone home with Zivox, but the doctor would not do it. I was livid, but helpless to do anything. I called Rao immediately and because I had not been seen recently, they would not prescribe an antibiotic, which makes sense for the most part. But Rao and the Team would follow my case. Once I took the second PFT, and my scores were lower, the USC team virtually demanded I drive or fly out to be hospitalized. They were my advocates.

One other thing, I whole heartedly agree we must be our own champions and advocates, but I am 34 and have always been an alpha personality type when it comes to my health and care. But what of those who are not so strong headed, experienced, or cannot wield their own voice to defend good care? What of the new parents who blindly trust their doctor, and don't realize this blind trust jeopardizes their CF child? The Foundation has general recommendations for treatment, to add such additional protocols would serve only to benefit the patient. If I was a wall flower, I would have died before this.

 

[anonymous]

My docs say that it is a 10% drop and then hospitilazation. Even if it is a 10% drop over a year. I think this is a good rule of thumb.

 

[anonymous]

Don't think sueing will do any good. For a start, what good will money do to your lung function? A case will more then likely cause you unnessecary stress. Also its very difficult to prove neglangence since cf is a PROGESSIVE disease and progression is expected. I DO see where you're coming from but from a legal standpoint your case has many and TOO mand plot holes in it in my opinon.

 

[NoExcuses]

.

 

[anonymous]

MY pft's stink now. But as far as a I know (I don't know what they were as a child or teen, but I was never sick or hospitalized) mine have never dropped more than 5 percent in 3 months time. I'm getting to the point now that any drop concerns the docs and he mentioned iv's last appointment. I think its dropped about 5 percent in the last 6 months or so.

Its funny, until this year I never really thought of myself as very sick, but now my pft's are like 50 and 30 percent as they've dropped slowly over the last 10 years or so. I've always taken my meds regularly and I guess that has prevented any large drops in pft's.

John 26 w/ cf

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>


one thing to think of is that doctors get slapped on the hand financially every time they admit patients - in the US and abroad. Docs are incentivized financially to do everything possible to keep patients out of the hospital. And every time they admit, their year end bonus is slashed. This is HMO, PPO, Medicaid, Medicare and federal governments in socialized medicine countries.

.</end quote></div>

Where the hell do you get that from? Especially in socialized medicine countries? Here in Canada, I pretty much get what i ask for, I love it. If i feel I need iv's they'll admit me. I wasn't aware that doctors in socialized medicine countries even got bonuses.

 

[NoExcuses]

.

 

[anonymous]

A 25.15% drop in liters (FEV1) is a huge amount for a doctor not to react aggressively. To drop from the 59.9 percentile to the 47 percentile is statistically very significant (12.9% drop). Even though our disease is PROGRESSIVE that does not state that the doctor gets a pass on mistakes, cause ... well ... "their all going to degenerate and die any way." I think that that is a bad argument for not bringing a case against the doctor.

And the money could facilitate the cost of a transplant and the additional years potentially lost not being able to work full-time anymore. For one to think the money would be worthless, you must not pay your own bills and consider the future-cost in expenses and lost production of this disease, you also must not be responsible to a wife or a child in which your ability to function directly affects others.

 

[Grendel]

Thanks for all the input.

The center was in Phoenix, but I won't mention the doctor's name. As for my drop in lung function, I meticulously keep all PFT records in an excel file, and in the past 12 years, since keeping my own records, my FEV1 has never dropped so dramatically, or ever been so low. And to graph the event clearly shows the significance of the event relative to my PFT history.

And I have lost functionality and employment potential from this event.

And PROGRESSIVE means nothing in this equation. Progressive is loss over time. This is one event of many in a very short amount of time. One that stands out among all the rest (at least my 12 year history).

Thanks again for the feedback, and I hope to hear more from you all. Thanks.

Grendel

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>



<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

one thing to think of is that doctors get slapped on the hand financially every time they admit patients - in the US and abroad. Docs are incentivized financially to do everything possible to keep patients out of the hospital. And every time they admit, their year end bonus is slashed. This is HMO, PPO, Medicaid, Medicare and federal governments in socialized medicine countries.



.</end quote></div>

Where the hell do you get that from? Especially in socialized medicine countries? Here in Canada, I pretty much get what i ask for, I love it. If i feel I need iv's they'll admit me. I wasn't aware that doctors in socialized medicine countries even got bonuses.</end quote></div>



If you're going to quote me, quote me correctly, Kiel.<img src="i/expressions/face-icon-small-disgusted.gif" border="0"> I didn't say <b> especially </b> in socialized medicine countries. Get it right.


Where the HELL did I get that from? By speaking to physicians who work in the United States now who used to work in Canada, the UK, Germany, France and Austria.

It happens here in the US too.


Ask Liz - her physician gives her a hard time about getting admitted into the hospital. I'm NOT saying that it's because of financial incentives... but I'm proving a point that not everyone in Canada gets what they want.


But the exact same thing happens here in the US too. Except instead of the government trying to control costs, HMOs and PPOs attempt to control costs.</end quote></div>

I wasn't quoting you. I was wondering where you got the information from, especially the part where you said doctors in socialized medicine countries get their bonuses slashed if they admit too many patients. Hence "especially in socialized medicine countries." Get it right.

I always thought that the doctors here worked on salaries. I wasn't aware that they get bonuses based on how many patients that they admit. However, I would have to say it is more on the policy of the hospital or the specific doctors incompetence rather than the fact that they are financially threatened if they admit people. I have been hospitalized once in Quebec on IV's, and they admited me on my request within one day. My clinics in Ottawa and Toronto has both been very good in giving me what i request.

I am actually going to ask my doc about this and see what she says. Just out of curiousity.

Kiel

 

[welshgirl]

i too am annoyed about your "rants" against socialised medicine, amy. will you pack it up? i can't speak for australia and canada but in the uk if you are ill you WILL be admitted to hospital on the double!!!! amy please in the future just quote usa health policies and not the rest of the world. please!<img src="i/expressions/face-icon-small-smile.gif" border="0">