What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

CF Lungs---

T

tictac

New member
Hi everyone there!!!

Before two months I had never heard of a word "CF" in my life ----And now this word has become part of my life.
It's all about my cousin(she is in India) who has been recently diagnosed with Lung CF ----She is a lovely soul on this earth......
Recently she told(while joking) me she has v special illness & only special
people has it ---After talking to her family members & doctors I came to know about this CF.

This is very rare case as there are not many cases of CF found in India, may be this is among few found so far....
She was being treated for Asthma for many years till recently they tested for CF....
Her parents ---no one has history of CF but God doesn't need history....HE has his own plans--- no one knows of....
As I was trying to find out more info about CF I found this forum & I thought people here are lovely & might help me ...

I just wanted to know what are her chances of getting well or what is the best treatment ......
She is on regular treatment ....she has cough & sometimes gets breathing problem.....

Is it possible for her to go for lung transplant (if I bring her here US) or what is the best way ----if she can recover from this CF....
I desperately want to do something her ---I don't want to see her dying ---this fear is killing me ---but I don't know
what is the best I can do for her ....

Please help me with your ideas.....
 
A

anonymous

New member
I am not well versed in the knowledge Indian doctors have regarding CF. Possibly, ideally, if she can come to the US for treatment & possible transplant when she gets to that point, that may be the best thing for her.
Not that Inida doctors are not good, that's not it at all. It's just that they may not have heard of CF themselves and may be unclear on how to treat it. Hopefully there is a pulmonologist there that can help her & will take the time to research about CF and the treatment of and she'll do just fine there.

CF is not something you "get over". But with the medications that are now available, it sure helps to treat the symptoms and not make them so hard to deal with in most cases.
And of course, since you mentioned God in your post, prayers are a helpful thing you can do on her behalf too.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Let us know of any specific questions you may have and welcome!<img src="i/expressions/rose.gif" border="0">
 
M

Mockingbird

New member
People aren't considered for lung transplants until their FEV 1 gets below 30%. I... um, don't know what FEV stands for, but basically it's the main number they look for on the pulmonary function test. Your cousin will probably know about it. Anyway, there's a long wait, unless your cousin has a compatible donor in the family. It has to be someone in her family, though, or they won't do it for ethical reasons, or something.

From what you said her condition doesn't sound too severe (A cough and a little breathing problem is pretty much normal for CF) I hope that is the case. If you have any questions, don't be afraid to ask.

Jarod
23 w/ cf
 
M

Mockingbird

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Emily65Roses</b></i><br>FEV1 = forced expiratory volume in 1 second.<hr></blockquote>

That's it? I was expecting something a little more obscure... or something in latin; now I feel like an idiot for not knowing that. =-)
 
A

anonymous

New member
Thanks for input ....
I found something about FEV1 & wanted to share with you----

FEV1 - forced expiratory volume in 1 second, FEV1%VC

Forced expiratory volume in one second, FEV1The FEV1 is the volume exhaled during the first second of a forced expiratory maneuver started from the level of total lung capacity.

As a 'rule of thumb', patients are referred to the transplant centre when their FEV1 is less than 30% predicted normal. However, other factors should be taken into account such as the rate of decline in respiratory function, quality of life, a more frequent need for iv therapy, poor weight profile.

Transplant timing

It is very difficult to predict precisely when an individual should have a transplant. In general decisions about the need for transplantation need to be addressed at least 2 years before the operation is likely to be essential. The physician needs to allow sufficient waiting time for both transplant assessment and the local availability of donor lungs that are in short supply. It is noteworthy that CF patients tolerate the waiting list poorly and are one of the patient groups most likely to die whilst waiting for transplantation whilst they achieve some of the best post-transplant survival rates.

Lung function

Early studies suggested that an FEV1 of less than 30% predicted was associated with a 50% 2 year mortality and this has been widely used as a benchmark when referring patients to the transplant centre. More recent evidence suggests that some patients with FEV1s as low as 15% predicted can survive for many years. In a study by Robinson et al only 1 of 30 patients dying from 1994-99 had an FEV1 <30% predicted normal two years before death. Doershuk et al reported that among patients with FEV1 less than 30% predicted , median survival was 4.6 years with 25% of patients living over 6 years. Similar results have also been reported by Augarten who found that patients with FEV1 <30% survive longer than patients post-lung transplant.

Source : <a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/transwhen.htm
">http://www.cysticfibrosismedicine.com/htmldocs/CFText/transwhen.htm
</a>
Thanks Angel & Emily
 
T

tictac

New member
Thanks for input ....

I found something about FEV1 & wanted to share with you----



FEV1 - forced expiratory volume in 1 second, FEV1%VC



Forced expiratory volume in one second, FEV1The FEV1 is the volume exhaled during the first second of a forced expiratory maneuver started from the level of total lung capacity.



As a 'rule of thumb', patients are referred to the transplant centre when their FEV1 is less than 30% predicted normal. However, other factors should be taken into account such as the rate of decline in respiratory function, quality of life, a more frequent need for iv therapy, poor weight profile.



Transplant timing



It is very difficult to predict precisely when an individual should have a transplant. In general decisions about the need for transplantation need to be addressed at least 2 years before the operation is likely to be essential. The physician needs to allow sufficient waiting time for both transplant assessment and the local availability of donor lungs that are in short supply. It is noteworthy that CF patients tolerate the waiting list poorly and are one of the patient groups most likely to die whilst waiting for transplantation whilst they achieve some of the best post-transplant survival rates.



Lung function



Early studies suggested that an FEV1 of less than 30% predicted was associated with a 50% 2 year mortality and this has been widely used as a benchmark when referring patients to the transplant centre. More recent evidence suggests that some patients with FEV1s as low as 15% predicted can survive for many years. In a study by Robinson et al only 1 of 30 patients dying from 1994-99 had an FEV1 <30% predicted normal two years before death. Doershuk et al reported that among patients with FEV1 less than 30% predicted , median survival was 4.6 years with 25% of patients living over 6 years. Similar results have also been reported by Augarten who found that patients with FEV1 <30% survive longer than patients post-lung transplant.



Source : <a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/transwhen.htm
">http://www.cysticfibrosismedicine.com/htmldocs/CFText/transwhen.htm
</a>


Thanks Angel & Emily<hr></blockquote>
 
J

JazzysMom

New member
Speaking of the first second in the PFT. Is it ony me or does it take that long to "remember" what to do therefore the results show a decline? I am not talking where there really is a decline in my health. I am talking the actual communication between my brain/lungs.
 
J

JT

New member
tictac,

I hope you are finding information that is helping to lessen your fear. I'm sure educating yourself is a great place to start as fear is usually related to the unknown. Because there is no cure as of yet and they are always working on new medications, some people find it rewarding to participate in fundraising. As others have mentioned, one has to be really sick to need a transplant. It is considered a last resort rather than a cure.

<blockquote>Quote<br><hr><i>Originally posted by: <b>Mockingbird</b></i><br>Anyway, there's a long wait, unless your cousin has a compatible donor in the family. It has to be someone in her family, though, or they won't do it for ethical reasons, or something. <hr></blockquote>

As of March 2005 there is not necessarily a long wait for transplant. Although this used to be true, they recently implemented a system that ranks patients based on how sick they are as well as how well they are predicted to do post transplant. Someone can get a transplant in a matter of months if not sooner. I have not heard of living donors needing to be in the family. I know several people that have received lungs from strangers. Transplant from living donors is considered the last of the last resorts. In 2004 there were 1111 lung transplants done, 17 of those were living donor transplants. (ustransplant.org)

You mentioned your cousin is one of a few cases found in India. If you're curious to compare her current "regular treatment" to some of those in the US I'm sure I and others would be happy to hear what she does/takes for medicine and compare with ours.

One more note about statistics. The data you sited about FEVs and transplants was from 2002. Survival rates are improving by the year! I wish you the best in helping your cousin live a full live.
 
A

anonymous

New member
I have a question I've always wondered about. It may sound stupid, but if my FEV1 is 30%, does that mean I only have 30% of my lung capacity available?
If not, how do you know what your lung capacity is?
 
M

Mockingbird

New member
I think 30% means 30% of the predicted lung volume you should have. I mean, the doctors have their little charts where they want us to be, and you're at 30% of what they want.
 
J

JT

New member
FEV1 of 30% means that you can blow 30% of the volume that a "normal" person could blow <b>in the first second</b> of blowing. You may have been thinking of FVC (forced vital capacity i.e. <b>total</b> air volume in an entire breath -- not just the first second).

I think they care about the air blown in the first second because it's a reflection of infection/inflamation.
 
You must log in or register to reply here.
Top