lobectomy

[caza]

<br>Just wondered if anyone had lobectomy -I have a collapsed upper right lobe and cavity in there and they did want to remove it but now it seemed to have collapsed but dont know the full extent until another ct scan which they are reluctant to do as I have had so many.  Just wondered if anyone had this and how they feel now.

 

[caza]

<br>Just wondered if anyone had lobectomy -I have a collapsed upper right lobe and cavity in there and they did want to remove it but now it seemed to have collapsed but dont know the full extent until another ct scan which they are reluctant to do as I have had so many. Just wondered if anyone had this and how they feel now.

 

[caza]

<br>Just wondered if anyone had lobectomy -I have a collapsed upper right lobe and cavity in there and they did want to remove it but now it seemed to have collapsed but dont know the full extent until another ct scan which they are reluctant to do as I have had so many. Just wondered if anyone had this and how they feel now.

 

[nmw0615]

I had a lower right lobectomy 3 years ago this week. I can honestly say my life has been better for it. My PFTs are down by about 25-30%, but I'm hospitalized twice a year compared to the 4 times I had been before the surgery.

My reoccurring problem was hemoptysis from a very specific location, and almost like clockwork, every three months I would cough up large quantities of blood and be in the hospital for two weeks. After about 3 years of this, I decided to have the lobe taken out and it was one of the best decisions I've made regarding my health.

I do tend to get out of breath a little quicker than before, and like I said, my new baseline PFTs are about 30% lower, but I no longer have the bleeding problems from before and hospitalization time has dropped significantly.

 

[nmw0615]

I had a lower right lobectomy 3 years ago this week. I can honestly say my life has been better for it. My PFTs are down by about 25-30%, but I'm hospitalized twice a year compared to the 4 times I had been before the surgery.

My reoccurring problem was hemoptysis from a very specific location, and almost like clockwork, every three months I would cough up large quantities of blood and be in the hospital for two weeks. After about 3 years of this, I decided to have the lobe taken out and it was one of the best decisions I've made regarding my health.

I do tend to get out of breath a little quicker than before, and like I said, my new baseline PFTs are about 30% lower, but I no longer have the bleeding problems from before and hospitalization time has dropped significantly.

 

[nmw0615]

I had a lower right lobectomy 3 years ago this week. I can honestly say my life has been better for it. My PFTs are down by about 25-30%, but I'm hospitalized twice a year compared to the 4 times I had been before the surgery.
<br />
<br />My reoccurring problem was hemoptysis from a very specific location, and almost like clockwork, every three months I would cough up large quantities of blood and be in the hospital for two weeks. After about 3 years of this, I decided to have the lobe taken out and it was one of the best decisions I've made regarding my health.
<br />
<br />I do tend to get out of breath a little quicker than before, and like I said, my new baseline PFTs are about 30% lower, but I no longer have the bleeding problems from before and hospitalization time has dropped significantly.

 

[Ldude916]

I had an upper right lobectomy in Nov 2009 at Barnes in St Louis. I was back to work by January 16 2010. My right upper lobe had a baseball sized aspargilis fungus ball that caused constant hymoptysis. I also was VERY fatigued and had hair loss before the surgery. This fungus ball was pea size to baseball size within 1 year!

Before the surgery my FEV was 30% and today my FEV remains about 28-30%. That lobe was basically 'dead' as it was not able to pass any air to even be significant for my FEV. I am currently listed on the lung transplant list, and this surgery has NOT made me ineligible for transplant. The surgeon said it's a little more tricky due to extra scar tissue, but it's not impossible to transplant. (I'm currently listed at Loyola in Chicago).

I would have probably been considered ineligible for a transplant if I had not had the lobe removed as there was risk to the chest wall bursting and the fungus entering my bloodstream and some other complications, like sepsis. Therefore, I decided to have the lobe removed.

Best decision ever. I am pretty 'healthy' otherwise, so the surgery wasn't terrible in terms of other complications. I was in the hospital about 2 weeks I think and was sent home for 1 week with a chest tube still in. I was able to stop taking prescription pain pills pretty quickly when I came home. Everyone's recovery is so different though....you really need to have a positive attitude and devoted family members taking care of you almost 24/7 for 3 weeks. It is pretty stressful, but in the end we are stronger for it and more prepared for what a transplant might be like!

So ya, right after the surgery there was a lot of pain, but they give you an epidural...I was already doing chest PT 2 days after the surgery and was up walking around!! It did hurt a LOT to cough, but you just have to grin and bear it...it gets way easier after the first week. The biggest pain I think was from the subcutaneous air I had in my torso - not the incision! I don't remember the incision hurting and today you can barely see it!

Obviously each case is individual as to why a doctor would suggest a lobectomy. It's a last resort solution in my opinion. You may have a different experience than me, since I only grow aspargilis and nothing else, I was lucky to get thru the surgery infection free. You really need to be committed to coughing and your treatments no matter how much it hurts. You have to have a positive attitude and do as much for yourself as you can.

I would definitely talk to 2-3 different hospitals/surgeons before making a decision and ask questions! It's so important to be your own advocate b/c the surgeons will not tell you everything unless you ask. The after care in the hospital was a little poor, so my husband and mother and to constantly be on the nurses and doctors to make sure that I was attended to properly, so keep that in mind whenever you make a choice.

I highly recommend reading "Sick Girl Speaks" by Tiffany Christensen. This book will help you and your family understand the importance of being advocates during this difficult time.

Good luck to you =)

 

[Ldude916]

I had an upper right lobectomy in Nov 2009 at Barnes in St Louis. I was back to work by January 16 2010. My right upper lobe had a baseball sized aspargilis fungus ball that caused constant hymoptysis. I also was VERY fatigued and had hair loss before the surgery. This fungus ball was pea size to baseball size within 1 year!

Before the surgery my FEV was 30% and today my FEV remains about 28-30%. That lobe was basically 'dead' as it was not able to pass any air to even be significant for my FEV. I am currently listed on the lung transplant list, and this surgery has NOT made me ineligible for transplant. The surgeon said it's a little more tricky due to extra scar tissue, but it's not impossible to transplant. (I'm currently listed at Loyola in Chicago).

I would have probably been considered ineligible for a transplant if I had not had the lobe removed as there was risk to the chest wall bursting and the fungus entering my bloodstream and some other complications, like sepsis. Therefore, I decided to have the lobe removed.

Best decision ever. I am pretty 'healthy' otherwise, so the surgery wasn't terrible in terms of other complications. I was in the hospital about 2 weeks I think and was sent home for 1 week with a chest tube still in. I was able to stop taking prescription pain pills pretty quickly when I came home. Everyone's recovery is so different though....you really need to have a positive attitude and devoted family members taking care of you almost 24/7 for 3 weeks. It is pretty stressful, but in the end we are stronger for it and more prepared for what a transplant might be like!

So ya, right after the surgery there was a lot of pain, but they give you an epidural...I was already doing chest PT 2 days after the surgery and was up walking around!! It did hurt a LOT to cough, but you just have to grin and bear it...it gets way easier after the first week. The biggest pain I think was from the subcutaneous air I had in my torso - not the incision! I don't remember the incision hurting and today you can barely see it!

Obviously each case is individual as to why a doctor would suggest a lobectomy. It's a last resort solution in my opinion. You may have a different experience than me, since I only grow aspargilis and nothing else, I was lucky to get thru the surgery infection free. You really need to be committed to coughing and your treatments no matter how much it hurts. You have to have a positive attitude and do as much for yourself as you can.

I would definitely talk to 2-3 different hospitals/surgeons before making a decision and ask questions! It's so important to be your own advocate b/c the surgeons will not tell you everything unless you ask. The after care in the hospital was a little poor, so my husband and mother and to constantly be on the nurses and doctors to make sure that I was attended to properly, so keep that in mind whenever you make a choice.

I highly recommend reading "Sick Girl Speaks" by Tiffany Christensen. This book will help you and your family understand the importance of being advocates during this difficult time.

Good luck to you =)

 

[Ldude916]

I had an upper right lobectomy in Nov 2009 at Barnes in St Louis. I was back to work by January 16 2010. My right upper lobe had a baseball sized aspargilis fungus ball that caused constant hymoptysis. I also was VERY fatigued and had hair loss before the surgery. This fungus ball was pea size to baseball size within 1 year!
<br />
<br />Before the surgery my FEV was 30% and today my FEV remains about 28-30%. That lobe was basically 'dead' as it was not able to pass any air to even be significant for my FEV. I am currently listed on the lung transplant list, and this surgery has NOT made me ineligible for transplant. The surgeon said it's a little more tricky due to extra scar tissue, but it's not impossible to transplant. (I'm currently listed at Loyola in Chicago).
<br />
<br />I would have probably been considered ineligible for a transplant if I had not had the lobe removed as there was risk to the chest wall bursting and the fungus entering my bloodstream and some other complications, like sepsis. Therefore, I decided to have the lobe removed.
<br />
<br />Best decision ever. I am pretty 'healthy' otherwise, so the surgery wasn't terrible in terms of other complications. I was in the hospital about 2 weeks I think and was sent home for 1 week with a chest tube still in. I was able to stop taking prescription pain pills pretty quickly when I came home. Everyone's recovery is so different though....you really need to have a positive attitude and devoted family members taking care of you almost 24/7 for 3 weeks. It is pretty stressful, but in the end we are stronger for it and more prepared for what a transplant might be like!
<br />
<br />So ya, right after the surgery there was a lot of pain, but they give you an epidural...I was already doing chest PT 2 days after the surgery and was up walking around!! It did hurt a LOT to cough, but you just have to grin and bear it...it gets way easier after the first week. The biggest pain I think was from the subcutaneous air I had in my torso - not the incision! I don't remember the incision hurting and today you can barely see it!
<br />
<br />Obviously each case is individual as to why a doctor would suggest a lobectomy. It's a last resort solution in my opinion. You may have a different experience than me, since I only grow aspargilis and nothing else, I was lucky to get thru the surgery infection free. You really need to be committed to coughing and your treatments no matter how much it hurts. You have to have a positive attitude and do as much for yourself as you can.
<br />
<br />I would definitely talk to 2-3 different hospitals/surgeons before making a decision and ask questions! It's so important to be your own advocate b/c the surgeons will not tell you everything unless you ask. The after care in the hospital was a little poor, so my husband and mother and to constantly be on the nurses and doctors to make sure that I was attended to properly, so keep that in mind whenever you make a choice.
<br />
<br />I highly recommend reading "Sick Girl Speaks" by Tiffany Christensen. This book will help you and your family understand the importance of being advocates during this difficult time.
<br />
<br />Good luck to you =)

 

[lizlas]

<P>Hi nmw0615</P>
<P>I didnt think the FEV would drop that much for a lobectomy...yrs ago when my dr. had mentioned one I think they said 15% decrease and then the rest of the lungs make up the difference and grow stronger to compensate....but I was in 20s then</P>
<P>but maybe the rest of the lungs have to be really healthy no bxis .(bronchiectasis)</P>
<P>how old are you? and what is your FEV 1 now...</P>
<P>thankx</P>

 

[lizlas]

<P>Hi nmw0615</P>
<P>I didnt think the FEV would drop that much for a lobectomy...yrs ago when my dr. had mentioned one I think they said 15% decrease and then the rest of the lungs make up the difference and grow stronger to compensate....but I was in 20s then</P>
<P>but maybe the rest of the lungs have to be really healthy no bxis .(bronchiectasis)</P>
<P>how old are you? and what is your FEV 1 now...</P>
<P>thankx</P>

 

[lizlas]

<P><BR>Hi nmw0615</P>
<P>I didnt think the FEV would drop that much for a lobectomy...yrs ago when my dr. had mentioned one I think they said 15% decrease and then the rest of the lungs make up the difference and grow stronger to compensate....but I was in 20s then</P>
<P>but maybe the rest of the lungs have to be really healthy no bxis .(bronchiectasis)</P>
<P>how old are you? and what is your FEV 1 now...</P>
<P>thankx</P>

 

[nmw0615]

<div>lizlas,</div><div><br></div><div>I think the reason the FEV drop was so drastic was because the rest of the lobe, and my lungs, were incredibly healthy. My doctors wanted to try and only remove the "dead" section, but because of the location, the entire lobe had to be removed.</div><div><br></div><div>I just turned 21 this summer and my FEV is somewhere between 70-75% right now.</div>

 

[nmw0615]

lizlas,<br>I think the reason the FEV drop was so drastic was because the rest of the lobe, and my lungs, were incredibly healthy. My doctors wanted to try and only remove the "dead" section, but because of the location, the entire lobe had to be removed.<br>I just turned 21 this summer and my FEV is somewhere between 70-75% right now.

 

[nmw0615]

lizlas,<br>I think the reason the FEV drop was so drastic was because the rest of the lobe, and my lungs, were incredibly healthy. My doctors wanted to try and only remove the "dead" section, but because of the location, the entire lobe had to be removed.<br>I just turned 21 this summer and my FEV is somewhere between 70-75% right now.

 

[caza]

Thank you for your replies - nmw quite a lot of lost lung function but at the end of the day the best decision.  Also ldude - for you too - now you can get on the transplant list with no further problems must have been awful the fungas ball.  Wonder how we get these things.  But you are obviously much younger than me so prob would recover that much better - keep up the good work.<br>

 

[caza]

Thank you for your replies - nmw quite a lot of lost lung function but at the end of the day the best decision. Also ldude - for you too - now you can get on the transplant list with no further problems must have been awful the fungas ball. Wonder how we get these things. But you are obviously much younger than me so prob would recover that much better - keep up the good work.<br>

 

[caza]

Thank you for your replies - nmw quite a lot of lost lung function but at the end of the day the best decision. Also ldude - for you too - now you can get on the transplant list with no further problems must have been awful the fungas ball. Wonder how we get these things. But you are obviously much younger than me so prob would recover that much better - keep up the good work.<br>

 

[Deb]

I had my left lower lobe removed in 1983 BEFORE they diagnosed my CF. In hindsight I was told that they probably could have saved the lung with intensive IV therapy.
Over the years every time I got pneumonia it was in the remaining left lobe. Then in 2010 the LL kept collapsing. I went to National Jewish and they told me the lung was full of infection and was more of a hindrance than a help. Plus they were concerned that eventually the infection would move over to my right lung.
In July of 2010 I had the rest of the left lung removed. One week in the hospital and 3 1/2 weeks total until I was back at work full time. My lung function did not change--meaning that the left lung was not functioning any way.
I am now exercising daily to build up my right lung and keep it as healthy as possible. I got short of breath pretty easily after the surgery, but now thanks to working out I am doing much better.

 

[Deb]

I had my left lower lobe removed in 1983 BEFORE they diagnosed my CF. In hindsight I was told that they probably could have saved the lung with intensive IV therapy.
Over the years every time I got pneumonia it was in the remaining left lobe. Then in 2010 the LL kept collapsing. I went to National Jewish and they told me the lung was full of infection and was more of a hindrance than a help. Plus they were concerned that eventually the infection would move over to my right lung.
In July of 2010 I had the rest of the left lung removed. One week in the hospital and 3 1/2 weeks total until I was back at work full time. My lung function did not change--meaning that the left lung was not functioning any way.
I am now exercising daily to build up my right lung and keep it as healthy as possible. I got short of breath pretty easily after the surgery, but now thanks to working out I am doing much better.