any others with one lung?

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Deb

Guest
I belong to a Facebook group, "One Lung People Unite" but everyone else in this group was either born with one lung or had a lung removed due to cancer. Wondering if there is anyone else that has had a lung removed due to their CF?
 

Melissa75

Administrator
[/QUOTE=Deb;977824]I belong to a Facebook group, "One Lung People Unite" but everyone else in this group was either born with one lung or had a lung removed due to cancer. Wondering if there is anyone else that has had a lung removed due to their CF?[/QUOTE]

On the bronchiectasis message board www.bronchiectasis.info there is a woman who's handle is 1lungAmy but I haven't seen her post in a while. There's also a thread called Members Who've Had Lung Surgery where you might find people interested in the FB group.
 
B

bookperson

Guest
I'm actually dealing with the possibility of a lobectomy right now. It would only be the removal of a part of my right lung, but can I ask what lead up to your lung removal? I have an infiltrate that never goes away with antibiotics, and this is sort of the last resort. Just curious if you had a similar situation.
 
D

Deb

Guest
I actually had 2/3 of my left lung removed BEFORE my CF diagnosis. This should have never been done but it was a small town hospital and when they went in and saw all the infection they decided to remove it. (long story) Fortunately a got to a CF center and got proper care after that. For the next 20 years every time I got pneumonia or a bad infection it was always in that left lung. In 2009 I spent most of the year on IV's for infection that would not clear up and my lung kept collapsing. I had also battled m-avium in the past. AFter a visit to National Jewish in Denver they decided that the lung was just full of infection. My right lung was relatively healthy and they were concerned the left lung would eventually infection the right lung.
Had the rest of thelung removed in 2010 and I have been a new person ever since. No longer cough and my PFT is higher now than when I had the left lung. Good luck to you. Let me know if you have more questions.
 
W

windex125

Guest
I have similar case to Deb but without the surgery, the right lung is diseased to the point of collaspe from MAC and brochiestasis MAC was discovered in 99 and although my doctor mentioned Denver, we never did go that route we did a cocktail of drugs but to no avail. The lung does not show up on the xray anymore. I am am worried that it will sooner or later move to the left, but now at this stage of my life I will not have it removed. I will be 60 in Dec. I think had we thought of this sooner and acted on it I wld of had a better chance. But will be will be. Pat CF-59
 

Babs03

New member
I have CF and had a right pneumonectomy in 2003. At that time my left lung was in almost perfect shape, meaning I had never got pneumonia in that lung and no infections, my surgeon thought maybe after removing my bad lung (which was only doing less than 10% of the work) that I may not have any CF symptoms. He had never seen a case like mine, which had one good and one bad lung. In 2006 I started having trouble breathing and it turns out I had post pneumonectomy, which is when your chest cavity doesn't fill up will fluid, so things started shifting over, like my heart and putting pressure on my bronchial tubes making it very hard to breathe. Had another operation to put two saline implants in where the right lung was and shift everything back over. My FEV1 has been 54-56% for about the last 15 years. Another thing that has happened in the last 3-4 years is my left upper lobe has started to expand over toward my right side. My Doctor thinks that may be why I have over 50% in the one lung still.
 
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windex125

Guest
I know what you are talking abt it' called mediastinal shift because of the collapsed lung everythimg is shifting. I don't think I wld under go surgery at this time but I am feeling the difference when I swallow food/pills etc. my FEV1 also has been in the low 50% for years now. Pat-CF/59
 
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