anyone had to have an upper right lobe removed???

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LouLou

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rainsmom</b></i>
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<br />.... but that right upper lobe has just basically quit on us. </end quote>
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<br />Could you tell us the diagnosis or prognosis of her upper right lobe's condition? We prefer to use medical terms around here :)
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<br />Erock - what's your FEV1 and FVC now? Also, do you know what your pre and post lobectomy FEV1's were?
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<br />The only person I've heard of since being on this site since 2006 who has had a lobectomy in recent times was Hairgirl. There have been others like Erock that had them 15+ years ago.
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<br />I'd get a second opinion for Rain to make sure another reputible cf center thinks it's the best idea. What center is recommending it?
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<br />I asked my doctor about a lobectomy for me. My worst damage is in my upper right lobe but by no means is it localized there. I have bleeding from that lobe and large voids visible on my CT scan. My pnemonia's of '79, '81 & '99 were all in that lobe but it's never collapsed. I have an FEV1 of 74%. I asked him if V770 all but stops cf in it's tracks would he suggest a lobectomy of that upper right lobe. He said no because lobectomies are a difficult recovery for cfers. They must be performed in patient and one must stay in the hospital (can't remember how many days) for a bit which makes him nervous. He doesn't like cfers to be in the hospital. Additionally, he and I quote him here said, "Lobectomies are in a lot of ways more difficult a recovery than transplant." I was blown away and asked why and he said because the patient still has 3/4 or more cf lungs that must be used and cleared agressively or pneumonia can set in quickly. At least with a transplant the new lungs don't have cf so laying around not using them for days doesn't lead to the type of problems that a cfer can have if they lay around for days not clearing their lungs. The pain is A LOT and the patient MUST suck it up and cough anyway. Anyway, after having that discussion with my doctor, John, I decided he knew what he was talking about :)
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<br />Hairgirl had hers out as a last ditch effort to save her life. She was b cepacia positive and very deteriorated and not a candidate for transplant. They had hoped by getting rid of the worst lobe she could squeeze out a little more quality time on planet earth. Not so...her decline was quick afterwards and she passed on.
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<br />Please keep us informed as I hope it goes great and I'd love to hear all about it.
 
R

rainsmom

Guest
ashleys lung function dropped from 99 to 79 in the summer had ivs for 3 weeks and brought back to 85. no more improvement. as far as the medical terms.. her doctor said it doesnt do her any good, it only breeds infection at this point. we see a doctor at arkansas childrens hospital and he is refering us to st louis childrens hospital. he has also mentioned getting a opinion from dallas childrens hospital. he feels that if we do no remove it it will lead to a quicker deteriation of the other lobes, which are in perfect shape at this time. he
 
R

rainsmom

Guest
ashleys lung function dropped from 99 to 79 in the summer had ivs for 3 weeks and brought back to 85. no more improvement. as far as the medical terms.. her doctor said it doesnt do her any good, it only breeds infection at this point. we see a doctor at arkansas childrens hospital and he is refering us to st louis childrens hospital. he has also mentioned getting a opinion from dallas childrens hospital. he feels that if we do no remove it it will lead to a quicker deteriation of the other lobes, which are in perfect shape at this time. he
 
R

rainsmom

Guest
ashleys lung function dropped from 99 to 79 in the summer had ivs for 3 weeks and brought back to 85. no more improvement. as far as the medical terms.. her doctor said it doesnt do her any good, it only breeds infection at this point. we see a doctor at arkansas childrens hospital and he is refering us to st louis childrens hospital. he has also mentioned getting a opinion from dallas childrens hospital. he feels that if we do no remove it it will lead to a quicker deteriation of the other lobes, which are in perfect shape at this time. he
 
T

theLostMiler

New member
On cysticlife.org there is a lady with a son named gage, who had part of his lung removed at one point, i think around 3-6 and he is now 11-13 (i cant remember exactly). He is doing awesome now...

If you have the time to go there, i think you might have to make an account but you can use the search function there and you should be able to see some of the moms responses.
 
T

theLostMiler

New member
On cysticlife.org there is a lady with a son named gage, who had part of his lung removed at one point, i think around 3-6 and he is now 11-13 (i cant remember exactly). He is doing awesome now...

If you have the time to go there, i think you might have to make an account but you can use the search function there and you should be able to see some of the moms responses.
 
T

theLostMiler

New member
On cysticlife.org there is a lady with a son named gage, who had part of his lung removed at one point, i think around 3-6 and he is now 11-13 (i cant remember exactly). He is doing awesome now...
<br />
<br />If you have the time to go there, i think you might have to make an account but you can use the search function there and you should be able to see some of the moms responses.
 
N

NYCLawGirl

New member
my upper left lobe was completely dead pre-tx, but the docs didn't consider taking it out despite the fact that it was generally agreed that without that lobe f-ing everything up transplant wouldn't be immediately necessary. probably a bit different, though, b/c my lungs without that lobe were functioning in the low 30s-high 20s, so waaaay below your daughter's lung function.

i do think a second opinion is always a good idea when considering something this big. with transplant, you always need "approval" from multiple docs before you get listed (at the very least, your CF doc and your tx doc will be consulted, and normally more). so if you haven't done so already, it might be worth asking your CF doc if there is another CF center where you could go fr a consult. most docs, i would hope, would be happy to refer you and even to hear another doc's perspective.
 
N

NYCLawGirl

New member
my upper left lobe was completely dead pre-tx, but the docs didn't consider taking it out despite the fact that it was generally agreed that without that lobe f-ing everything up transplant wouldn't be immediately necessary. probably a bit different, though, b/c my lungs without that lobe were functioning in the low 30s-high 20s, so waaaay below your daughter's lung function.

i do think a second opinion is always a good idea when considering something this big. with transplant, you always need "approval" from multiple docs before you get listed (at the very least, your CF doc and your tx doc will be consulted, and normally more). so if you haven't done so already, it might be worth asking your CF doc if there is another CF center where you could go fr a consult. most docs, i would hope, would be happy to refer you and even to hear another doc's perspective.
 
N

NYCLawGirl

New member
my upper left lobe was completely dead pre-tx, but the docs didn't consider taking it out despite the fact that it was generally agreed that without that lobe f-ing everything up transplant wouldn't be immediately necessary. probably a bit different, though, b/c my lungs without that lobe were functioning in the low 30s-high 20s, so waaaay below your daughter's lung function.
<br />
<br />i do think a second opinion is always a good idea when considering something this big. with transplant, you always need "approval" from multiple docs before you get listed (at the very least, your CF doc and your tx doc will be consulted, and normally more). so if you haven't done so already, it might be worth asking your CF doc if there is another CF center where you could go fr a consult. most docs, i would hope, would be happy to refer you and even to hear another doc's perspective.
 
L

Ldude916

New member
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 now being evaluated to get 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 being evaluated 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 (or child's) 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.

Good luck to you!
 
L

Ldude916

New member
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 now being evaluated to get 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 being evaluated 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 (or child's) 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.

Good luck to you!
 
L

Ldude916

New member
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 now being evaluated to get 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 being evaluated 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 (or child's) 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 />Good luck to you!
 
M

Mikeinfla

Guest
I had a blebectomy a few years back for a non healing pneumothorax. I have 70 staples holding my lung together in that spot and it was all done through 3 holes! Hardly any scar on the outside at all. They used video assisted thorascopy and if that is a option you have for this, I would go with that. They didn't even use sutures to seal the operation holes only bioglue except for the chest tube one.
 
M

Mikeinfla

Guest
I had a blebectomy a few years back for a non healing pneumothorax. I have 70 staples holding my lung together in that spot and it was all done through 3 holes! Hardly any scar on the outside at all. They used video assisted thorascopy and if that is a option you have for this, I would go with that. They didn't even use sutures to seal the operation holes only bioglue except for the chest tube one.
 
M

Mikeinfla

Guest
I had a blebectomy a few years back for a non healing pneumothorax. I have 70 staples holding my lung together in that spot and it was all done through 3 holes! Hardly any scar on the outside at all. They used video assisted thorascopy and if that is a option you have for this, I would go with that. They didn't even use sutures to seal the operation holes only bioglue except for the chest tube one.
 
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