D
Deb
Guest
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.
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It is a lot to consider & going to be a hard decision to make.. Like everyone else said if I were you I would get several opinions..
Both my sister & myself were late dx , she had two lobectomys before dx, I think they were trying to stop her bleeding.. I cultured Myco bacteriem abscesses & have a caviety in my lung & had a few bleeds. The drs at Denver National Jewish in Colorado said they would prob do a lobectomy in the future but my dr in N.Y. said she feels the drs in Co. want to cut to fast.. So I know I will be having this dilemma in the future..
As was stated you should keep a future lung tx in mind..
Thoughts & prayers to you guys <img src="i/expressions/heart.gif" border="0"> joni
Both my sister & myself were late dx , she had two lobectomys before dx, I think they were trying to stop her bleeding.. I cultured Myco bacteriem abscesses & have a caviety in my lung & had a few bleeds. The drs at Denver National Jewish in Colorado said they would prob do a lobectomy in the future but my dr in N.Y. said she feels the drs in Co. want to cut to fast.. So I know I will be having this dilemma in the future..
As was stated you should keep a future lung tx in mind..
Thoughts & prayers to you guys <img src="i/expressions/heart.gif" border="0"> joni
It is a lot to consider & going to be a hard decision to make.. Like everyone else said if I were you I would get several opinions..
Both my sister & myself were late dx , she had two lobectomys before dx, I think they were trying to stop her bleeding.. I cultured Myco bacteriem abscesses & have a caviety in my lung & had a few bleeds. The drs at Denver National Jewish in Colorado said they would prob do a lobectomy in the future but my dr in N.Y. said she feels the drs in Co. want to cut to fast.. So I know I will be having this dilemma in the future..
As was stated you should keep a future lung tx in mind..
Thoughts & prayers to you guys <img src="i/expressions/heart.gif" border="0"> joni
Both my sister & myself were late dx , she had two lobectomys before dx, I think they were trying to stop her bleeding.. I cultured Myco bacteriem abscesses & have a caviety in my lung & had a few bleeds. The drs at Denver National Jewish in Colorado said they would prob do a lobectomy in the future but my dr in N.Y. said she feels the drs in Co. want to cut to fast.. So I know I will be having this dilemma in the future..
As was stated you should keep a future lung tx in mind..
Thoughts & prayers to you guys <img src="i/expressions/heart.gif" border="0"> joni
It is a lot to consider & going to be a hard decision to make.. Like everyone else said if I were you I would get several opinions..
<br />
<br /> Both my sister & myself were late dx , she had two lobectomys before dx, I think they were trying to stop her bleeding.. I cultured Myco bacteriem abscesses & have a caviety in my lung & had a few bleeds. The drs at Denver National Jewish in Colorado said they would prob do a lobectomy in the future but my dr in N.Y. said she feels the drs in Co. want to cut to fast.. So I know I will be having this dilemma in the future..
<br />
<br />As was stated you should keep a future lung tx in mind..
<br />
<br /> Thoughts & prayers to you guys <img src="i/expressions/heart.gif" border="0"> joni
<br />
<br /> Both my sister & myself were late dx , she had two lobectomys before dx, I think they were trying to stop her bleeding.. I cultured Myco bacteriem abscesses & have a caviety in my lung & had a few bleeds. The drs at Denver National Jewish in Colorado said they would prob do a lobectomy in the future but my dr in N.Y. said she feels the drs in Co. want to cut to fast.. So I know I will be having this dilemma in the future..
<br />
<br />As was stated you should keep a future lung tx in mind..
<br />
<br /> Thoughts & prayers to you guys <img src="i/expressions/heart.gif" border="0"> joni
R
rainsmom
Guest
it is my understanding that it can make a transplant more difficult but it can and is being done. I should know what date we are to go to houston in the next two days. They are trying to make sure we can see the CF doctor and the lung surgeons at the same visit.
R
rainsmom
Guest
it is my understanding that it can make a transplant more difficult but it can and is being done. I should know what date we are to go to houston in the next two days. They are trying to make sure we can see the CF doctor and the lung surgeons at the same visit.
R
rainsmom
Guest
it is my understanding that it can make a transplant more difficult but it can and is being done. I should know what date we are to go to houston in the next two days. They are trying to make sure we can see the CF doctor and the lung surgeons at the same visit.
I am 30 years old, and I received an upper right lobectomy in Nov 2009 at Barnes in St. Louis due to a massive fungus ball (baseball size!) that developed in the lobe. I decided to move forward with the lobectomy for a few reasons; the infection could no longer be fought with anitbiotics, as I did not have enough blood supply to that lobe to carry medication, infection was causing me to cough blood daily, my hair was falling out and I had no energy and low immune system from constantly fighting the infection, the risk of the fungus bursting through the chest wall and infiltrating my blood stream was high, and they most likely could not transplant me with a large fungus ball b/c if they tried to transplant and that ball burst into my blood, I'd be a goner.
I am now on the transplant list for Loyola in Chicago, so you are correct that lobectomies do not make you ineligible for transplant - it's just more difficult due to the extra scarring in the chest cavity upon removal of the lung, some issues where the staple line on your sternum is, etc.
From reading your case, I agree that multiple opinions are needed - but my gut tells me to stick to a course of rigorous chest PT at least 2 times a day (by hand!! not the vest!! the vest does NOT get to that area well enough at all!!) and treating with antibiotics to fight exacerbations. I am skeptical that the surgery would stop her coughing. It sounds like your CF doc was trying to 'outsmart' CF by removing the lobe so it didn't spread to other lobes....I just don't think that is a safe gamble to take because this is a very intense surgery. Eventually CF will make a home in the other lobes, and exercise, chest PT and medications are our best defense now. Also, by losing that lung, she will most likely loose FEV capacity - which i think the goal is to keep as much capacity as possible.
Your daughter sounds very active, which is such great lung therapy to keep them clear - and I think adding the chest PT by hand will help. At this point, it seems to me the risks of a lobectomy are too great for your daughter's case. On a cystic patient, they cannot usually do the surgery liproscopically because her lung will be attached to her chest wall due to the CF. She will most likely have about an 8 inch scar from her back shoulder blade to under her armpit.
If I was in your place, I would elect NOT to do the surgery. It's a very serious surgery that could introduce it's own side effects, and going through it myself, if I had the option of using meds, chest PT and exercise to stay STABLE, I would choose that. Unfortunately the reality is CF is a degenerative disease and it is so hard to accept that lung function goes down and just 'stays' there. It is so hard to not have answers about what to do, why it's happening, and why FEV's cease to revert to what our 'base FEV' was.
I would suggest also talking to a psychologist/social worker - does your CF center offer one? It may help you to vent your frustrations to someone about not having all the answers and give you some additional tools. I think it's great you're on the forums getting many different opinions. Keep being your own advocate and research things on your own that you can bring back to your CF doc that might help your daughter - I find if you can't have control over the disease, it helps a bit to have control over getting informed.
I've been in your place before - feeling helpless, not understanding why my FEV is going down even though I'm doing everything the doctors tell me - it's hard to accept that there are not any straight answers. Arm yourself with information like you're doing and I have no doubts you'll make the right decision.
Good luck!
I am now on the transplant list for Loyola in Chicago, so you are correct that lobectomies do not make you ineligible for transplant - it's just more difficult due to the extra scarring in the chest cavity upon removal of the lung, some issues where the staple line on your sternum is, etc.
From reading your case, I agree that multiple opinions are needed - but my gut tells me to stick to a course of rigorous chest PT at least 2 times a day (by hand!! not the vest!! the vest does NOT get to that area well enough at all!!) and treating with antibiotics to fight exacerbations. I am skeptical that the surgery would stop her coughing. It sounds like your CF doc was trying to 'outsmart' CF by removing the lobe so it didn't spread to other lobes....I just don't think that is a safe gamble to take because this is a very intense surgery. Eventually CF will make a home in the other lobes, and exercise, chest PT and medications are our best defense now. Also, by losing that lung, she will most likely loose FEV capacity - which i think the goal is to keep as much capacity as possible.
Your daughter sounds very active, which is such great lung therapy to keep them clear - and I think adding the chest PT by hand will help. At this point, it seems to me the risks of a lobectomy are too great for your daughter's case. On a cystic patient, they cannot usually do the surgery liproscopically because her lung will be attached to her chest wall due to the CF. She will most likely have about an 8 inch scar from her back shoulder blade to under her armpit.
If I was in your place, I would elect NOT to do the surgery. It's a very serious surgery that could introduce it's own side effects, and going through it myself, if I had the option of using meds, chest PT and exercise to stay STABLE, I would choose that. Unfortunately the reality is CF is a degenerative disease and it is so hard to accept that lung function goes down and just 'stays' there. It is so hard to not have answers about what to do, why it's happening, and why FEV's cease to revert to what our 'base FEV' was.
I would suggest also talking to a psychologist/social worker - does your CF center offer one? It may help you to vent your frustrations to someone about not having all the answers and give you some additional tools. I think it's great you're on the forums getting many different opinions. Keep being your own advocate and research things on your own that you can bring back to your CF doc that might help your daughter - I find if you can't have control over the disease, it helps a bit to have control over getting informed.
I've been in your place before - feeling helpless, not understanding why my FEV is going down even though I'm doing everything the doctors tell me - it's hard to accept that there are not any straight answers. Arm yourself with information like you're doing and I have no doubts you'll make the right decision.
Good luck!
I am 30 years old, and I received an upper right lobectomy in Nov 2009 at Barnes in St. Louis due to a massive fungus ball (baseball size!) that developed in the lobe. I decided to move forward with the lobectomy for a few reasons; the infection could no longer be fought with anitbiotics, as I did not have enough blood supply to that lobe to carry medication, infection was causing me to cough blood daily, my hair was falling out and I had no energy and low immune system from constantly fighting the infection, the risk of the fungus bursting through the chest wall and infiltrating my blood stream was high, and they most likely could not transplant me with a large fungus ball b/c if they tried to transplant and that ball burst into my blood, I'd be a goner.
I am now on the transplant list for Loyola in Chicago, so you are correct that lobectomies do not make you ineligible for transplant - it's just more difficult due to the extra scarring in the chest cavity upon removal of the lung, some issues where the staple line on your sternum is, etc.
From reading your case, I agree that multiple opinions are needed - but my gut tells me to stick to a course of rigorous chest PT at least 2 times a day (by hand!! not the vest!! the vest does NOT get to that area well enough at all!!) and treating with antibiotics to fight exacerbations. I am skeptical that the surgery would stop her coughing. It sounds like your CF doc was trying to 'outsmart' CF by removing the lobe so it didn't spread to other lobes....I just don't think that is a safe gamble to take because this is a very intense surgery. Eventually CF will make a home in the other lobes, and exercise, chest PT and medications are our best defense now. Also, by losing that lung, she will most likely loose FEV capacity - which i think the goal is to keep as much capacity as possible.
Your daughter sounds very active, which is such great lung therapy to keep them clear - and I think adding the chest PT by hand will help. At this point, it seems to me the risks of a lobectomy are too great for your daughter's case. On a cystic patient, they cannot usually do the surgery liproscopically because her lung will be attached to her chest wall due to the CF. She will most likely have about an 8 inch scar from her back shoulder blade to under her armpit.
If I was in your place, I would elect NOT to do the surgery. It's a very serious surgery that could introduce it's own side effects, and going through it myself, if I had the option of using meds, chest PT and exercise to stay STABLE, I would choose that. Unfortunately the reality is CF is a degenerative disease and it is so hard to accept that lung function goes down and just 'stays' there. It is so hard to not have answers about what to do, why it's happening, and why FEV's cease to revert to what our 'base FEV' was.
I would suggest also talking to a psychologist/social worker - does your CF center offer one? It may help you to vent your frustrations to someone about not having all the answers and give you some additional tools. I think it's great you're on the forums getting many different opinions. Keep being your own advocate and research things on your own that you can bring back to your CF doc that might help your daughter - I find if you can't have control over the disease, it helps a bit to have control over getting informed.
I've been in your place before - feeling helpless, not understanding why my FEV is going down even though I'm doing everything the doctors tell me - it's hard to accept that there are not any straight answers. Arm yourself with information like you're doing and I have no doubts you'll make the right decision.
Good luck!
I am now on the transplant list for Loyola in Chicago, so you are correct that lobectomies do not make you ineligible for transplant - it's just more difficult due to the extra scarring in the chest cavity upon removal of the lung, some issues where the staple line on your sternum is, etc.
From reading your case, I agree that multiple opinions are needed - but my gut tells me to stick to a course of rigorous chest PT at least 2 times a day (by hand!! not the vest!! the vest does NOT get to that area well enough at all!!) and treating with antibiotics to fight exacerbations. I am skeptical that the surgery would stop her coughing. It sounds like your CF doc was trying to 'outsmart' CF by removing the lobe so it didn't spread to other lobes....I just don't think that is a safe gamble to take because this is a very intense surgery. Eventually CF will make a home in the other lobes, and exercise, chest PT and medications are our best defense now. Also, by losing that lung, she will most likely loose FEV capacity - which i think the goal is to keep as much capacity as possible.
Your daughter sounds very active, which is such great lung therapy to keep them clear - and I think adding the chest PT by hand will help. At this point, it seems to me the risks of a lobectomy are too great for your daughter's case. On a cystic patient, they cannot usually do the surgery liproscopically because her lung will be attached to her chest wall due to the CF. She will most likely have about an 8 inch scar from her back shoulder blade to under her armpit.
If I was in your place, I would elect NOT to do the surgery. It's a very serious surgery that could introduce it's own side effects, and going through it myself, if I had the option of using meds, chest PT and exercise to stay STABLE, I would choose that. Unfortunately the reality is CF is a degenerative disease and it is so hard to accept that lung function goes down and just 'stays' there. It is so hard to not have answers about what to do, why it's happening, and why FEV's cease to revert to what our 'base FEV' was.
I would suggest also talking to a psychologist/social worker - does your CF center offer one? It may help you to vent your frustrations to someone about not having all the answers and give you some additional tools. I think it's great you're on the forums getting many different opinions. Keep being your own advocate and research things on your own that you can bring back to your CF doc that might help your daughter - I find if you can't have control over the disease, it helps a bit to have control over getting informed.
I've been in your place before - feeling helpless, not understanding why my FEV is going down even though I'm doing everything the doctors tell me - it's hard to accept that there are not any straight answers. Arm yourself with information like you're doing and I have no doubts you'll make the right decision.
Good luck!
I am 30 years old, and I received an upper right lobectomy in Nov 2009 at Barnes in St. Louis due to a massive fungus ball (baseball size!) that developed in the lobe. I decided to move forward with the lobectomy for a few reasons; the infection could no longer be fought with anitbiotics, as I did not have enough blood supply to that lobe to carry medication, infection was causing me to cough blood daily, my hair was falling out and I had no energy and low immune system from constantly fighting the infection, the risk of the fungus bursting through the chest wall and infiltrating my blood stream was high, and they most likely could not transplant me with a large fungus ball b/c if they tried to transplant and that ball burst into my blood, I'd be a goner.
<br />
<br />I am now on the transplant list for Loyola in Chicago, so you are correct that lobectomies do not make you ineligible for transplant - it's just more difficult due to the extra scarring in the chest cavity upon removal of the lung, some issues where the staple line on your sternum is, etc.
<br />
<br />From reading your case, I agree that multiple opinions are needed - but my gut tells me to stick to a course of rigorous chest PT at least 2 times a day (by hand!! not the vest!! the vest does NOT get to that area well enough at all!!) and treating with antibiotics to fight exacerbations. I am skeptical that the surgery would stop her coughing. It sounds like your CF doc was trying to 'outsmart' CF by removing the lobe so it didn't spread to other lobes....I just don't think that is a safe gamble to take because this is a very intense surgery. Eventually CF will make a home in the other lobes, and exercise, chest PT and medications are our best defense now. Also, by losing that lung, she will most likely loose FEV capacity - which i think the goal is to keep as much capacity as possible.
<br />
<br />Your daughter sounds very active, which is such great lung therapy to keep them clear - and I think adding the chest PT by hand will help. At this point, it seems to me the risks of a lobectomy are too great for your daughter's case. On a cystic patient, they cannot usually do the surgery liproscopically because her lung will be attached to her chest wall due to the CF. She will most likely have about an 8 inch scar from her back shoulder blade to under her armpit.
<br />
<br />If I was in your place, I would elect NOT to do the surgery. It's a very serious surgery that could introduce it's own side effects, and going through it myself, if I had the option of using meds, chest PT and exercise to stay STABLE, I would choose that. Unfortunately the reality is CF is a degenerative disease and it is so hard to accept that lung function goes down and just 'stays' there. It is so hard to not have answers about what to do, why it's happening, and why FEV's cease to revert to what our 'base FEV' was.
<br />
<br />I would suggest also talking to a psychologist/social worker - does your CF center offer one? It may help you to vent your frustrations to someone about not having all the answers and give you some additional tools. I think it's great you're on the forums getting many different opinions. Keep being your own advocate and research things on your own that you can bring back to your CF doc that might help your daughter - I find if you can't have control over the disease, it helps a bit to have control over getting informed.
<br />
<br />I've been in your place before - feeling helpless, not understanding why my FEV is going down even though I'm doing everything the doctors tell me - it's hard to accept that there are not any straight answers. Arm yourself with information like you're doing and I have no doubts you'll make the right decision.
<br />
<br />Good luck!
<br />
<br />I am now on the transplant list for Loyola in Chicago, so you are correct that lobectomies do not make you ineligible for transplant - it's just more difficult due to the extra scarring in the chest cavity upon removal of the lung, some issues where the staple line on your sternum is, etc.
<br />
<br />From reading your case, I agree that multiple opinions are needed - but my gut tells me to stick to a course of rigorous chest PT at least 2 times a day (by hand!! not the vest!! the vest does NOT get to that area well enough at all!!) and treating with antibiotics to fight exacerbations. I am skeptical that the surgery would stop her coughing. It sounds like your CF doc was trying to 'outsmart' CF by removing the lobe so it didn't spread to other lobes....I just don't think that is a safe gamble to take because this is a very intense surgery. Eventually CF will make a home in the other lobes, and exercise, chest PT and medications are our best defense now. Also, by losing that lung, she will most likely loose FEV capacity - which i think the goal is to keep as much capacity as possible.
<br />
<br />Your daughter sounds very active, which is such great lung therapy to keep them clear - and I think adding the chest PT by hand will help. At this point, it seems to me the risks of a lobectomy are too great for your daughter's case. On a cystic patient, they cannot usually do the surgery liproscopically because her lung will be attached to her chest wall due to the CF. She will most likely have about an 8 inch scar from her back shoulder blade to under her armpit.
<br />
<br />If I was in your place, I would elect NOT to do the surgery. It's a very serious surgery that could introduce it's own side effects, and going through it myself, if I had the option of using meds, chest PT and exercise to stay STABLE, I would choose that. Unfortunately the reality is CF is a degenerative disease and it is so hard to accept that lung function goes down and just 'stays' there. It is so hard to not have answers about what to do, why it's happening, and why FEV's cease to revert to what our 'base FEV' was.
<br />
<br />I would suggest also talking to a psychologist/social worker - does your CF center offer one? It may help you to vent your frustrations to someone about not having all the answers and give you some additional tools. I think it's great you're on the forums getting many different opinions. Keep being your own advocate and research things on your own that you can bring back to your CF doc that might help your daughter - I find if you can't have control over the disease, it helps a bit to have control over getting informed.
<br />
<br />I've been in your place before - feeling helpless, not understanding why my FEV is going down even though I'm doing everything the doctors tell me - it's hard to accept that there are not any straight answers. Arm yourself with information like you're doing and I have no doubts you'll make the right decision.
<br />
<br />Good luck!