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I need some PFT info
- Thread starter anonymous
- Start date
I'm not sure if I can answer that or not, but I'll try to shed some light.
A normal FEV1 (percent of predicted) is anywhere from 80%-120%. When I say normal, I mean for a normal, healthy non-CF person.
When an FEV1 gets to 30% or less of predicted, then it's time to start considering transplant possibly as an option. It really is amazing to me how little lung function we can seem to operate on. My FEV1 is in the low 30's and I can't jog around the block or anything, but I am able to do what I need to do each day. Granted, when I have a cold or extra congestion, it makes it a whole lot harder to do what needs to get done!
I would say that 50% or more wouldn't be too hard on a person, but I am not sure. I don't think I had PFT's done back when mine were at that percentage, or if I did, I didn't ask for copies or ask what my numbers were. Maybe some people that have FEV1's in the 40-50 range can share how they are doing.
Just remember that each case is individual. Some others w/ FEV1 in the low 30's may not be able to do what I can & others could probably do more than I can.
Hope I've helped some<img src="i/expressions/face-icon-small-confused.gif" border="0">
A normal FEV1 (percent of predicted) is anywhere from 80%-120%. When I say normal, I mean for a normal, healthy non-CF person.
When an FEV1 gets to 30% or less of predicted, then it's time to start considering transplant possibly as an option. It really is amazing to me how little lung function we can seem to operate on. My FEV1 is in the low 30's and I can't jog around the block or anything, but I am able to do what I need to do each day. Granted, when I have a cold or extra congestion, it makes it a whole lot harder to do what needs to get done!
I would say that 50% or more wouldn't be too hard on a person, but I am not sure. I don't think I had PFT's done back when mine were at that percentage, or if I did, I didn't ask for copies or ask what my numbers were. Maybe some people that have FEV1's in the 40-50 range can share how they are doing.
Just remember that each case is individual. Some others w/ FEV1 in the low 30's may not be able to do what I can & others could probably do more than I can.
Hope I've helped some<img src="i/expressions/face-icon-small-confused.gif" border="0">
FEV-1 is the important number and above 75% perdicted would be a great number for a CF in the 20's. At 50% perdicted FEV=1 you can ski. At 18% time for a transplant. Post transplant some get up to 100 percent (or better). I am 4 years out post TX and run around 80% FEV-1 and have a good quality of life. At 25% and dropping life, is getting on the edge and an exacerbation may be life threatening. I have seen a CF 24 year old go from 60% to death within 6 months (no cepacia).
CF age 54 with Cepacia TX
CF age 54 with Cepacia TX
There are about 5 centers in the U.S. that will tx a person with CF and Cepacia. It is not an easy surgery and risk of it going into the new lungs, or the blood stream are high.
Once you have those new lungs, you no longer have the Cepacia... unless it got left behind. That is the purpose of lung tx, to rid the lungs of that illness and disease.
Joanne Schum
luckylungforjo@aol.com
Once you have those new lungs, you no longer have the Cepacia... unless it got left behind. That is the purpose of lung tx, to rid the lungs of that illness and disease.
Joanne Schum
luckylungforjo@aol.com
I consider only two serious TX centers that will accept cepacia (Duke and UNC). Other centers will "think about" cepacia's but will not in the end, perform the surgery. Stanford, Pittsburgh, etc. will drop you from the list if you become more drug resistent while on the list, so why bother. Genovar 3(?) will not be accepted by Duke. In Canada, Montreal will do cepacia, but only for canuks or third world. This information on Stanford and Pitt. is a few years old, yet I doubt much has changed.
In theory you will loose cepacia post TX, in reality it is my understanding about 25% do not recolonize. With cepacia in your sinus, and immunosuppression you may recolonize. In my case, I had a rough TX and had pneumonia with the new lungs (very bad idea). I did recolonize, but a bronc. two years ago did not find the bacteria in the new lungs. I am sure I have cepacia in the sinuses.
My life post TX with cepacia is great with a lifestyle that affords downhill skiing, serios whitewater rafting, XC skiing, riding motorcycles (dirt and street), hiking and travel. Life with a TX is adding another fatal disease to CF. I have had to give up WW kayaking and backpacking (perhaps age related).
CF 54 TX 4.5 years out.
In theory you will loose cepacia post TX, in reality it is my understanding about 25% do not recolonize. With cepacia in your sinus, and immunosuppression you may recolonize. In my case, I had a rough TX and had pneumonia with the new lungs (very bad idea). I did recolonize, but a bronc. two years ago did not find the bacteria in the new lungs. I am sure I have cepacia in the sinuses.
My life post TX with cepacia is great with a lifestyle that affords downhill skiing, serios whitewater rafting, XC skiing, riding motorcycles (dirt and street), hiking and travel. Life with a TX is adding another fatal disease to CF. I have had to give up WW kayaking and backpacking (perhaps age related).
CF 54 TX 4.5 years out.
Thank you for the information. I will pass it on to my son. He was approached my his doctor about whether or not he wants to consider trasnplant. He cultured Cepacia a little over a year ago. We knew there very few centers that would accept him. He does have Genomovar 3 and his cultures show complete resistance to everything although 3-5 antibiotic Combination seems to work. Since starting Azactam(inhaled), he seems to be doing ok. Pft's have been staying the same(High 50's to low 60's). He had sinus surgey a few months back and learned that he does have Cepacia in the sinuses so Iknow that is an issue. Thank you for the info. I always prefer to hear from someone that has "been there"
Thanks
Michelle
Thanks
Michelle
Michelle.
I would suggest doing what I did. If he is interested in a TX or the potential, pull up the serious TX center list (Second wind), call the TX program and ask the Transplant coordinators if they consider cepacia patients.
Duke I think rejects genovar 3, but call them. When I was TX'ed they did not test the genovars. Duke has had very poor success with one genovar (either 3 or 4).
Prior to TX, I was on a 5 antibiotic IV drill with very little impact. Nasty bug.
I have had what I consider to be a good outcome from the TX. I am also twice the age of your son and managed to luck out. TX is not a cure but many of my friends are doing fairly well and do not regret the choice. I have seen CF kids from 8 to my age TX'ed with some good outcomes.
I have seen many go down quickly with cepacia or other bacteria and at 50-60% perdicted the TX centers would not list. But contacting centers I believe can not begin too early in the course of CF's. I waited too long (almost fatal) when a CF center in the pacific NW gave me very poor info. regarding TX.
Two years ago I visisted a 24 year old CF on his death bed in the hospital. He went from never being told of his disease by his parents to in the hospital dying within one year. He did not consider TX because he was "too healthy". What a friggin waste of life, he couldn't believe my obvious health when I walked in his room. He changed his mind about a TX, yet he only had days to live. TX is a tough thought, depends if your a nasty tough person that would rather go out fighting and screaming with your nails hanging onto life, or your happy to let whatever happen. My wife certainly seems to be happy with my choice.
I know a 27 year old female on her second set of TX'ed lungs, first lost through Brocheolitus obliterans. One tough woman, great story.
Ask you Cf docs. about flushing the sinus with tobrimycin.
I would suggest doing what I did. If he is interested in a TX or the potential, pull up the serious TX center list (Second wind), call the TX program and ask the Transplant coordinators if they consider cepacia patients.
Duke I think rejects genovar 3, but call them. When I was TX'ed they did not test the genovars. Duke has had very poor success with one genovar (either 3 or 4).
Prior to TX, I was on a 5 antibiotic IV drill with very little impact. Nasty bug.
I have had what I consider to be a good outcome from the TX. I am also twice the age of your son and managed to luck out. TX is not a cure but many of my friends are doing fairly well and do not regret the choice. I have seen CF kids from 8 to my age TX'ed with some good outcomes.
I have seen many go down quickly with cepacia or other bacteria and at 50-60% perdicted the TX centers would not list. But contacting centers I believe can not begin too early in the course of CF's. I waited too long (almost fatal) when a CF center in the pacific NW gave me very poor info. regarding TX.
Two years ago I visisted a 24 year old CF on his death bed in the hospital. He went from never being told of his disease by his parents to in the hospital dying within one year. He did not consider TX because he was "too healthy". What a friggin waste of life, he couldn't believe my obvious health when I walked in his room. He changed his mind about a TX, yet he only had days to live. TX is a tough thought, depends if your a nasty tough person that would rather go out fighting and screaming with your nails hanging onto life, or your happy to let whatever happen. My wife certainly seems to be happy with my choice.
I know a 27 year old female on her second set of TX'ed lungs, first lost through Brocheolitus obliterans. One tough woman, great story.
Ask you Cf docs. about flushing the sinus with tobrimycin.
You are quite an inspirational person. Thank you so much for not only sharing your experiences but also sharing you "love for life". I have a feeling I could learn a great deal for you. I could feel your fight even through your e-mail. I will do some checking. I happen to be a fighting mother but I will admit, this darn bug scares me often.
Michelle
psThanks for the tip on the sinuses, we will give that a try
Michelle
psThanks for the tip on the sinuses, we will give that a try