As an adult with CF what would you do in this situation?

rainsmom · Mar 2, 2011

I've posted info on our case listed under lobectamy, and had a few replys. My daughter is 15 and is dd508. She cultures staph and pa (neither one that is the bad kind at this point) she is very active, point guard on basketball team, runs track and very socially happy. She has had to have two tune ups one when she was 11 and one this past summer. Her fev1 is 85. Last spring it was in the upper 90's but after tune up it hasnt gone past 85. Her only trouble spot is her right upper lobe (she asperated milk as an infant and it has gradually declined) in september the radiogist said that if he didnt know she had cf he would not be able to tell in the other parts of her lungs SO... her cf doctor thinks it would be a good idea to remove that right upper lobe, reason being that that would end the coughing and she in infection that she seems to keep. After 3 weeks of antibotics (IV) she stayed clear for about 8 weeks. We did not have a visit with one of the Dr.s at St louis, but our doctor did request an opinion on Ashley Rain and that dr said he would use frequent antibiotics instead. We are now in the process of going to childrens hospital in Houston for their opinion. I know it is a very serious surgery, but if we get there and the doctor says it will elliminate her cough, (and several people that had to have something similar done even gained weight after the surgery.) What would you do? I really need input from adults with CF, bc this is my daughters future that I am makeing such a huge decision on and I want to do what is best for her so if you could give me some insite i would love it!!

rainsmom · Mar 2, 2011

I've posted info on our case listed under lobectamy, and had a few replys. My daughter is 15 and is dd508. She cultures staph and pa (neither one that is the bad kind at this point) she is very active, point guard on basketball team, runs track and very socially happy. She has had to have two tune ups one when she was 11 and one this past summer. Her fev1 is 85. Last spring it was in the upper 90's but after tune up it hasnt gone past 85. Her only trouble spot is her right upper lobe (she asperated milk as an infant and it has gradually declined) in september the radiogist said that if he didnt know she had cf he would not be able to tell in the other parts of her lungs SO... her cf doctor thinks it would be a good idea to remove that right upper lobe, reason being that that would end the coughing and she in infection that she seems to keep. After 3 weeks of antibotics (IV) she stayed clear for about 8 weeks. We did not have a visit with one of the Dr.s at St louis, but our doctor did request an opinion on Ashley Rain and that dr said he would use frequent antibiotics instead. We are now in the process of going to childrens hospital in Houston for their opinion. I know it is a very serious surgery, but if we get there and the doctor says it will elliminate her cough, (and several people that had to have something similar done even gained weight after the surgery.) What would you do? I really need input from adults with CF, bc this is my daughters future that I am makeing such a huge decision on and I want to do what is best for her so if you could give me some insite i would love it!!

rainsmom · Mar 2, 2011

I've posted info on our case listed under lobectamy, and had a few replys. My daughter is 15 and is dd508. She cultures staph and pa (neither one that is the bad kind at this point) she is very active, point guard on basketball team, runs track and very socially happy. She has had to have two tune ups one when she was 11 and one this past summer. Her fev1 is 85. Last spring it was in the upper 90's but after tune up it hasnt gone past 85. Her only trouble spot is her right upper lobe (she asperated milk as an infant and it has gradually declined) in september the radiogist said that if he didnt know she had cf he would not be able to tell in the other parts of her lungs SO... her cf doctor thinks it would be a good idea to remove that right upper lobe, reason being that that would end the coughing and she in infection that she seems to keep. After 3 weeks of antibotics (IV) she stayed clear for about 8 weeks. We did not have a visit with one of the Dr.s at St louis, but our doctor did request an opinion on Ashley Rain and that dr said he would use frequent antibiotics instead. We are now in the process of going to childrens hospital in Houston for their opinion. I know it is a very serious surgery, but if we get there and the doctor says it will elliminate her cough, (and several people that had to have something similar done even gained weight after the surgery.) What would you do? I really need input from adults with CF, bc this is my daughters future that I am makeing such a huge decision on and I want to do what is best for her so if you could give me some insite i would love it!!

Havoc · Mar 2, 2011

A lobectomy is a major surgical intervention and with all surgeries there are risks. I think it's very wise to get a second opinion. In theory, it stands to reason that if her right upper lobe is the only source of problems, it could be removed to protect the remaining 2 lobes (in the right lung). I'm not sure that the benefits outweigh the risks. You should discuss the risks with both a CF team and the thoracic surgeon. Also ask if the procedure could be done with VATS, which is similar to a laproscopic procedure in the stomach and usually carries less risk of complication. Lobectomies are more commonly done in cancer patients, you may want to look on a lung cancer forum for people who have undergone lobectomies. I hope you can find some good information as this is a difficult decision.

Havoc · Mar 2, 2011

A lobectomy is a major surgical intervention and with all surgeries there are risks. I think it's very wise to get a second opinion. In theory, it stands to reason that if her right upper lobe is the only source of problems, it could be removed to protect the remaining 2 lobes (in the right lung). I'm not sure that the benefits outweigh the risks. You should discuss the risks with both a CF team and the thoracic surgeon. Also ask if the procedure could be done with VATS, which is similar to a laproscopic procedure in the stomach and usually carries less risk of complication. Lobectomies are more commonly done in cancer patients, you may want to look on a lung cancer forum for people who have undergone lobectomies. I hope you can find some good information as this is a difficult decision.

Havoc · Mar 2, 2011

A lobectomy is a major surgical intervention and with all surgeries there are risks. I think it's very wise to get a second opinion. In theory, it stands to reason that if her right upper lobe is the only source of problems, it could be removed to protect the remaining 2 lobes (in the right lung). I'm not sure that the benefits outweigh the risks. You should discuss the risks with both a CF team and the thoracic surgeon. Also ask if the procedure could be done with VATS, which is similar to a laproscopic procedure in the stomach and usually carries less risk of complication. Lobectomies are more commonly done in cancer patients, you may want to look on a lung cancer forum for people who have undergone lobectomies. I hope you can find some good information as this is a difficult decision.

mamaScarlett · Mar 2, 2011

I ditto the 2nd opinion (and maybe even a 3rd to be honest) and seeking the opinion of the surgeons as well.
This is a big decision obviously, so you need all the facts and all scenarios presented to you realistically.
Its important to remember that although this could help her lungs dramatically-its not a cure. (i know of course that you realize this, but food for thought) She'll always have cf and eventually she'll need ivs again, etc. I don't say that to be a downer, but to be realistic about this surgery. It can't be the be all end all answer. You just want to be realistic about expectations.
The other thing to consider is that she is still very young. I'm one of those weird types that have improved as I've gotten older. I have an area of bad damage on my lower left lobe from the first 2 years of my life when I lived with smokers and had pneumonia. It gave me so much trouble when I was little, but now it gives me none. The years around puberty and growth bring about alot of changes that affect Cf too. You just don't know-in 5 years this spot of hers could be a small issue.
Of course it could also turn into a bigger issue. So talking it out with as many people as possible is the best thing.
Other than this spot and possibly doing this surgery, she sounds like she has above average health for a 15 yr old with Cf.
I'm sure you'll make the right decision after consulting all the right people. Let us know what happens!

mamaScarlett · Mar 2, 2011

I ditto the 2nd opinion (and maybe even a 3rd to be honest) and seeking the opinion of the surgeons as well.
This is a big decision obviously, so you need all the facts and all scenarios presented to you realistically.
Its important to remember that although this could help her lungs dramatically-its not a cure. (i know of course that you realize this, but food for thought) She'll always have cf and eventually she'll need ivs again, etc. I don't say that to be a downer, but to be realistic about this surgery. It can't be the be all end all answer. You just want to be realistic about expectations.
The other thing to consider is that she is still very young. I'm one of those weird types that have improved as I've gotten older. I have an area of bad damage on my lower left lobe from the first 2 years of my life when I lived with smokers and had pneumonia. It gave me so much trouble when I was little, but now it gives me none. The years around puberty and growth bring about alot of changes that affect Cf too. You just don't know-in 5 years this spot of hers could be a small issue.
Of course it could also turn into a bigger issue. So talking it out with as many people as possible is the best thing.
Other than this spot and possibly doing this surgery, she sounds like she has above average health for a 15 yr old with Cf.
I'm sure you'll make the right decision after consulting all the right people. Let us know what happens!

mamaScarlett · Mar 2, 2011

I ditto the 2nd opinion (and maybe even a 3rd to be honest) and seeking the opinion of the surgeons as well.
 This is a big decision obviously, so you need all the facts and all scenarios presented to you realistically.
 Its important to remember that although this could help her lungs dramatically-its not a cure. (i know of course that you realize this, but food for thought) She'll always have cf and eventually she'll need ivs again, etc. I don't say that to be a downer, but to be realistic about this surgery. It can't be the be all end all answer. You just want to be realistic about expectations.
 The other thing to consider is that she is still very young. I'm one of those weird types that have improved as I've gotten older. I have an area of bad damage on my lower left lobe from the first 2 years of my life when I lived with smokers and had pneumonia. It gave me so much trouble when I was little, but now it gives me none. The years around puberty and growth bring about alot of changes that affect Cf too. You just don't know-in 5 years this spot of hers could be a small issue.
 Of course it could also turn into a bigger issue. So talking it out with as many people as possible is the best thing.
 Other than this spot and possibly doing this surgery, she sounds like she has above average health for a 15 yr old with Cf.
 I'm sure you'll make the right decision after consulting all the right people. Let us know what happens!

Printer · Mar 2, 2011

So much to comment on. My Dad was, I believe mis dx with TB in 1952 (I believe he had CF). As a result they removed one lobe of one lung. Aside from having a scar the operation went great, and that was 1952.

He returned to work as a roofer and carried bundles of shingles up a ladder to a 2 and sometimes 3 story roof, before installing them. Sometimes as frequently as a bundle every 15 minutes. Physically there was no downside at all.

As to your DD. Respectfully, your decision is to evaluate and follow the medical advice that you get. If you feel that the Doctors are experts in their field, then I think that you need to submit to there knowledge and training.

I would push for as small a scar as possible. The new robotitic operations leave a very small scar.

Best of luck with your decision.

Bill

Printer · Mar 2, 2011

So much to comment on. My Dad was, I believe mis dx with TB in 1952 (I believe he had CF). As a result they removed one lobe of one lung. Aside from having a scar the operation went great, and that was 1952.

He returned to work as a roofer and carried bundles of shingles up a ladder to a 2 and sometimes 3 story roof, before installing them. Sometimes as frequently as a bundle every 15 minutes. Physically there was no downside at all.

As to your DD. Respectfully, your decision is to evaluate and follow the medical advice that you get. If you feel that the Doctors are experts in their field, then I think that you need to submit to there knowledge and training.

I would push for as small a scar as possible. The new robotitic operations leave a very small scar.

Best of luck with your decision.

Bill

Printer · Mar 2, 2011

So much to comment on. My Dad was, I believe mis dx with TB in 1952 (I believe he had CF). As a result they removed one lobe of one lung. Aside from having a scar the operation went great, and that was 1952.
 
 He returned to work as a roofer and carried bundles of shingles up a ladder to a 2 and sometimes 3 story roof, before installing them. Sometimes as frequently as a bundle every 15 minutes. Physically there was no downside at all.
 
 As to your DD. Respectfully, your decision is to evaluate and follow the medical advice that you get. If you feel that the Doctors are experts in their field, then I think that you need to submit to there knowledge and training.
 
 I would push for as small a scar as possible. The new robotitic operations leave a very small scar.
 
 Best of luck with your decision.
 
 Bill

Deb · Mar 3, 2011

I had 2/3 of my lung removed when I was 24, BEFORE my diagnosis of CF. My CF doctor said it should not have been done and heavy doses of antibiotics and percussion could have cleared out a lot of the infection. I lost much more lung function than I needed to by having the surgery.

I did really well for several years after the surgery but eventually I had gotten so many pneumonias in the remaining portion of the lung that it collapsed and would not re inflate. Despite several doses of antibiotics I was sick for almost a year.

Last year I had the rest of that lung removed. They told me I would be better off without it. It had become a harbor for infection.

Unfortunately I continue to have some issues and already got a pneumonia in my "good lung". I have to be very diligent and assure that I don't get sick now that I only have one lung.

I would definitely get 2 or 3 opinions. I would also recommend National Jewish Hospital in Denver, Co.

Deb · Mar 3, 2011

I had 2/3 of my lung removed when I was 24, BEFORE my diagnosis of CF. My CF doctor said it should not have been done and heavy doses of antibiotics and percussion could have cleared out a lot of the infection. I lost much more lung function than I needed to by having the surgery.

I did really well for several years after the surgery but eventually I had gotten so many pneumonias in the remaining portion of the lung that it collapsed and would not re inflate. Despite several doses of antibiotics I was sick for almost a year.

Last year I had the rest of that lung removed. They told me I would be better off without it. It had become a harbor for infection.

Unfortunately I continue to have some issues and already got a pneumonia in my "good lung". I have to be very diligent and assure that I don't get sick now that I only have one lung.

I would definitely get 2 or 3 opinions. I would also recommend National Jewish Hospital in Denver, Co.

Deb · Mar 3, 2011

I had 2/3 of my lung removed when I was 24, BEFORE my diagnosis of CF. My CF doctor said it should not have been done and heavy doses of antibiotics and percussion could have cleared out a lot of the infection. I lost much more lung function than I needed to by having the surgery.
 
 I did really well for several years after the surgery but eventually I had gotten so many pneumonias in the remaining portion of the lung that it collapsed and would not re inflate. Despite several doses of antibiotics I was sick for almost a year.
 
 Last year I had the rest of that lung removed. They told me I would be better off without it. It had become a harbor for infection.
 
 Unfortunately I continue to have some issues and already got a pneumonia in my "good lung". I have to be very diligent and assure that I don't get sick now that I only have one lung.
 
 I would definitely get 2 or 3 opinions. I would also recommend National Jewish Hospital in Denver, Co.

CountryGirl · Mar 4, 2011

I agree with Havoc and the other poster who said you should definitely get a 2nd opinion. I believe Houston is a great place to go and think you should also talk to a cadiothoracic surgeon, as someone else on here stated. They will know how the rest of the lungs will act and they will have to take on extra work that the missing lobe may have been doing...or even the heart may have to work harder as well.

In my opinion, from all you have said and knowing what I know...I would not want my lobe removed. I think that most CF drs would prefer the use of antibiotics and PT be done instead. I would. As a CF patient, you need ALL the lung function you can get. I dont know, but it could also affect what might happen if she were to ever need a transplant. Not sure.

CountryGirl · Mar 4, 2011

I agree with Havoc and the other poster who said you should definitely get a 2nd opinion. I believe Houston is a great place to go and think you should also talk to a cadiothoracic surgeon, as someone else on here stated. They will know how the rest of the lungs will act and they will have to take on extra work that the missing lobe may have been doing...or even the heart may have to work harder as well.

In my opinion, from all you have said and knowing what I know...I would not want my lobe removed. I think that most CF drs would prefer the use of antibiotics and PT be done instead. I would. As a CF patient, you need ALL the lung function you can get. I dont know, but it could also affect what might happen if she were to ever need a transplant. Not sure.

CountryGirl · Mar 4, 2011

I agree with Havoc and the other poster who said you should definitely get a 2nd opinion. I believe Houston is a great place to go and think you should also talk to a cadiothoracic surgeon, as someone else on here stated. They will know how the rest of the lungs will act and they will have to take on extra work that the missing lobe may have been doing...or even the heart may have to work harder as well.
 
 In my opinion, from all you have said and knowing what I know...I would not want my lobe removed. I think that most CF drs would prefer the use of antibiotics and PT be done instead. I would. As a CF patient, you need ALL the lung function you can get. I dont know, but it could also affect what might happen if she were to ever need a transplant. Not sure.

Deb · Mar 4, 2011

Country Girl is correct. Removing a lobe/lung affects your ability to receive a transplant down the road. A difficult decision that I had to make.

Deb · Mar 4, 2011

Country Girl is correct. Removing a lobe/lung affects your ability to receive a transplant down the road. A difficult decision that I had to make.

As an adult with CF what would you do in this situation?

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