R
rainsmom
Guest
if anyone has had this procedure done PLEASE contact me:}
R
rainsmom
Guest
if anyone has had this procedure done PLEASE contact me:}
R
rainsmom
Guest
if anyone has had this procedure done PLEASE contact me:}
livingstrong
New member
I had my right upper lobe removed 6 years to the day now, and it was the greatest life changer of my life. I realized what it was to not cough anymore, and within a few years later with diet and exercise gained 25lbs and never felt better. Had I known then what I know now I would have done it when I was 16 or so. I had it done at Mayo Clinic by Dr. Deschau and they were great there. Any questions feel free to ask.
livingstrong
New member
I had my right upper lobe removed 6 years to the day now, and it was the greatest life changer of my life. I realized what it was to not cough anymore, and within a few years later with diet and exercise gained 25lbs and never felt better. Had I known then what I know now I would have done it when I was 16 or so. I had it done at Mayo Clinic by Dr. Deschau and they were great there. Any questions feel free to ask.
livingstrong
New member
I had my right upper lobe removed 6 years to the day now, and it was the greatest life changer of my life. I realized what it was to not cough anymore, and within a few years later with diet and exercise gained 25lbs and never felt better. Had I known then what I know now I would have done it when I was 16 or so. I had it done at Mayo Clinic by Dr. Deschau and they were great there. Any questions feel free to ask.
NYCLawGirl
New member
this might not be super helpful, but lobectomy/lung reapportionment surgeries are super uncommon in CF, b/c most of the time the damage isn't isolated to one part of the lung and since it is a full-lung disease docs often don't want to mess with removal only to have more problems arise later. (note: i am NOT saying they're unheard of, obviously, or that people shouldn't consider them - just that they're not common.) all that is to say: you might have better luck with this question on a COPD board/forum? it's a super common procedure for the treatment of emphysema, etc, and a lot of the risks/benefits will be similar. i just think you'll find more people there able to offer some info, even if it's not CF specific.
hope that helps and lots of luck!
hope that helps and lots of luck!
NYCLawGirl
New member
this might not be super helpful, but lobectomy/lung reapportionment surgeries are super uncommon in CF, b/c most of the time the damage isn't isolated to one part of the lung and since it is a full-lung disease docs often don't want to mess with removal only to have more problems arise later. (note: i am NOT saying they're unheard of, obviously, or that people shouldn't consider them - just that they're not common.) all that is to say: you might have better luck with this question on a COPD board/forum? it's a super common procedure for the treatment of emphysema, etc, and a lot of the risks/benefits will be similar. i just think you'll find more people there able to offer some info, even if it's not CF specific.
hope that helps and lots of luck!
hope that helps and lots of luck!
NYCLawGirl
New member
this might not be super helpful, but lobectomy/lung reapportionment surgeries are super uncommon in CF, b/c most of the time the damage isn't isolated to one part of the lung and since it is a full-lung disease docs often don't want to mess with removal only to have more problems arise later. (note: i am NOT saying they're unheard of, obviously, or that people shouldn't consider them - just that they're not common.) all that is to say: you might have better luck with this question on a COPD board/forum? it's a super common procedure for the treatment of emphysema, etc, and a lot of the risks/benefits will be similar. i just think you'll find more people there able to offer some info, even if it's not CF specific.
<br />
<br />hope that helps and lots of luck!
<br />
<br />hope that helps and lots of luck!
Good idea, Piper.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.bronchiectasis.info/forum/forum_posts.asp?TID=4246&KW=surgery
">http://www.bronchiectasis.info...p?TID=4246&KW=surgery
</a>
A thread from the bronchiectasis r us forum about members who have had lung surgery. If you search surgery on the forum, you will likely find more threads too.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.bronchiectasis.info/forum/forum_posts.asp?TID=4246&KW=surgery
">http://www.bronchiectasis.info...p?TID=4246&KW=surgery
</a>
A thread from the bronchiectasis r us forum about members who have had lung surgery. If you search surgery on the forum, you will likely find more threads too.
Good idea, Piper.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.bronchiectasis.info/forum/forum_posts.asp?TID=4246&KW=surgery
">http://www.bronchiectasis.info...p?TID=4246&KW=surgery
</a>
A thread from the bronchiectasis r us forum about members who have had lung surgery. If you search surgery on the forum, you will likely find more threads too.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.bronchiectasis.info/forum/forum_posts.asp?TID=4246&KW=surgery
">http://www.bronchiectasis.info...p?TID=4246&KW=surgery
</a>
A thread from the bronchiectasis r us forum about members who have had lung surgery. If you search surgery on the forum, you will likely find more threads too.
Good idea, Piper.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.bronchiectasis.info/forum/forum_posts.asp?TID=4246&KW=surgery
">http://www.bronchiectasis.info...p?TID=4246&KW=surgery
</a><br />
<br />A thread from the bronchiectasis r us forum about members who have had lung surgery. If you search surgery on the forum, you will likely find more threads too.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.bronchiectasis.info/forum/forum_posts.asp?TID=4246&KW=surgery
">http://www.bronchiectasis.info...p?TID=4246&KW=surgery
</a><br />
<br />A thread from the bronchiectasis r us forum about members who have had lung surgery. If you search surgery on the forum, you will likely find more threads too.
R
rainsmom
Guest
thanks for the idea of where to look, i have generally found articles on cancer. It does seem to be very uncommon in cf , but Ashley Rain falls into the catagory of localized area. According to her cf doctor and the radiologist if you were not informed you wouldn't know from her xrays that she has cf in the rest of her lungs. (as of this past september). the concern is that if we dont remove it, it could speed up the process of the disease in the good part of her lungs. Her bugs are still not resistant, so that is good. She has only had two hospitalizations but that right upper lobe has just basically quit on us. Oral antibiotics improves the cough and can be completely stopped with ivs but doesnt last long. We do not want a port or to stay on ivs extended periods of time. She is very active, plays point guard on her jr high bball team. anyway... all that to say thanks for the info lol
R
rainsmom
Guest
thanks for the idea of where to look, i have generally found articles on cancer. It does seem to be very uncommon in cf , but Ashley Rain falls into the catagory of localized area. According to her cf doctor and the radiologist if you were not informed you wouldn't know from her xrays that she has cf in the rest of her lungs. (as of this past september). the concern is that if we dont remove it, it could speed up the process of the disease in the good part of her lungs. Her bugs are still not resistant, so that is good. She has only had two hospitalizations but that right upper lobe has just basically quit on us. Oral antibiotics improves the cough and can be completely stopped with ivs but doesnt last long. We do not want a port or to stay on ivs extended periods of time. She is very active, plays point guard on her jr high bball team. anyway... all that to say thanks for the info lol
R
rainsmom
Guest
thanks for the idea of where to look, i have generally found articles on cancer. It does seem to be very uncommon in cf , but Ashley Rain falls into the catagory of localized area. According to her cf doctor and the radiologist if you were not informed you wouldn't know from her xrays that she has cf in the rest of her lungs. (as of this past september). the concern is that if we dont remove it, it could speed up the process of the disease in the good part of her lungs. Her bugs are still not resistant, so that is good. She has only had two hospitalizations but that right upper lobe has just basically quit on us. Oral antibiotics improves the cough and can be completely stopped with ivs but doesnt last long. We do not want a port or to stay on ivs extended periods of time. She is very active, plays point guard on her jr high bball team. anyway... all that to say thanks for the info lol
I had an upper right lobectomy 22 years ago, when I was 11. It wasn't a pleasant experience besides the cool get well gifts I got. Which is how my dad coaxed me into getting the surgery. Bribery works on kids. I hear the whole procedure and recovery is less intense nowadays.
Basically I was having lots of exacerbations occuring in the same lobe. They obviously must have thought it was pretty serious to take out the lobe.
After recovery, I didn't go in the hospital for about 3 years and generally less often after that as compared to before the surgery. And now I'm 33 so I guess it worked well. You can email me if you have any questions. erocka77 (at) gmail.com
Basically I was having lots of exacerbations occuring in the same lobe. They obviously must have thought it was pretty serious to take out the lobe.
After recovery, I didn't go in the hospital for about 3 years and generally less often after that as compared to before the surgery. And now I'm 33 so I guess it worked well. You can email me if you have any questions. erocka77 (at) gmail.com
I had an upper right lobectomy 22 years ago, when I was 11. It wasn't a pleasant experience besides the cool get well gifts I got. Which is how my dad coaxed me into getting the surgery. Bribery works on kids. I hear the whole procedure and recovery is less intense nowadays.
Basically I was having lots of exacerbations occuring in the same lobe. They obviously must have thought it was pretty serious to take out the lobe.
After recovery, I didn't go in the hospital for about 3 years and generally less often after that as compared to before the surgery. And now I'm 33 so I guess it worked well. You can email me if you have any questions. erocka77 (at) gmail.com
Basically I was having lots of exacerbations occuring in the same lobe. They obviously must have thought it was pretty serious to take out the lobe.
After recovery, I didn't go in the hospital for about 3 years and generally less often after that as compared to before the surgery. And now I'm 33 so I guess it worked well. You can email me if you have any questions. erocka77 (at) gmail.com
I had an upper right lobectomy 22 years ago, when I was 11. It wasn't a pleasant experience besides the cool get well gifts I got. Which is how my dad coaxed me into getting the surgery. Bribery works on kids. I hear the whole procedure and recovery is less intense nowadays.
<br />Basically I was having lots of exacerbations occuring in the same lobe. They obviously must have thought it was pretty serious to take out the lobe.
<br />After recovery, I didn't go in the hospital for about 3 years and generally less often after that as compared to before the surgery. And now I'm 33 so I guess it worked well. You can email me if you have any questions. erocka77 (at) gmail.com
<br />Basically I was having lots of exacerbations occuring in the same lobe. They obviously must have thought it was pretty serious to take out the lobe.
<br />After recovery, I didn't go in the hospital for about 3 years and generally less often after that as compared to before the surgery. And now I'm 33 so I guess it worked well. You can email me if you have any questions. erocka77 (at) gmail.com
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rainsmom</b></i>
.... but that right upper lobe has just basically quit on us. </end quote></div>
Could you tell us the diagnosis or prognosis of her upper right lobe's condition? We prefer to use medical terms around here
Erock - what's your FEV1 and FVC now? Also, do you know what your pre and post lobectomy FEV1's were?
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.
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?
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
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.
Please keep us informed as I hope it goes great and I'd love to hear all about it.
.... but that right upper lobe has just basically quit on us. </end quote></div>
Could you tell us the diagnosis or prognosis of her upper right lobe's condition? We prefer to use medical terms around here
Erock - what's your FEV1 and FVC now? Also, do you know what your pre and post lobectomy FEV1's were?
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.
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?
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
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.
Please keep us informed as I hope it goes great and I'd love to hear all about it.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rainsmom</b></i>
.... but that right upper lobe has just basically quit on us. </end quote>
Could you tell us the diagnosis or prognosis of her upper right lobe's condition? We prefer to use medical terms around here
Erock - what's your FEV1 and FVC now? Also, do you know what your pre and post lobectomy FEV1's were?
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.
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?
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
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.
Please keep us informed as I hope it goes great and I'd love to hear all about it.
.... but that right upper lobe has just basically quit on us. </end quote>
Could you tell us the diagnosis or prognosis of her upper right lobe's condition? We prefer to use medical terms around here
Erock - what's your FEV1 and FVC now? Also, do you know what your pre and post lobectomy FEV1's were?
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.
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?
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
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.
Please keep us informed as I hope it goes great and I'd love to hear all about it.