Lung Surgery

HairGirl

New member
So tomorrow I have a virtual lung scan, I've had one day about a year or so ago, we don't have too many options left anymore for me and one of them is to take out my upper right lobe, the reason we've come to this is because I've now had 16 embolizations (been intubated 3 times, this last one being the worst) and with each embolization the risk is getting higher and higher for blood clots, stroke, and paralization.

I know some of you have had portions of your lung removed and actually found out my neighbor has too, so I was wondering what your experience was and what I should expect. I do want to do the surgery because I hope it will help me! I know it won't solve the problem of hemoptysis but hopefully it will help it not be so severe. Thanks!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

LisaV

New member
I only know people with emphysema who have had an upper lobe removed ., Since the lobe was lousy, they actually could breath better afterwards.
 

my65roses4me

New member
<span style=" font-size: x-small;">I had the same surgery for the
same reason you will be having it. I had about 26 embolizations,
each one would help for a little while then my hemoptysis would
start up again with a vengeance. Back in 2001 I had my upper left
lobe removed because of a bad hemorage that wouldn't stop without
it. I had 3 blood transfusions before the surgery but only coughed
them back up. My only option and a life saving one was the
lobectomy. The surgery itself is no walk in the park, I wont lie to
you. But if it wasn't for that surgery I would be in heaven by now.
I dont regret getting the surgery and would do it again to save my
life. The surgery itself and the fact that I am missing a part of
my lung has not affected my health, in fact my lung functions were
better after the surgery because that part of my lung was so sick.
I would say not to be afraid but that would be silly because any
surgery comes with risks. But the way I looked at it was, I was
going to lose my life from the hemoptysis so I didn't see any other
alternative. I wish you luck. If you need to talk please email me
any time. When is your surgery going to be?<br>
You will be in my thoughts!<br>
Khristina 31 yr old cfer<br>
my65roses@hotmail.com<br>
 

catboogie

New member
oh no! that doesn't sound good. i don't know anything about this but if it helps i guess it is a good thing? i hope you get a lot of good feedback and good luck at the appointment.

laura, 27
 

Diane

New member
I'm sorry you have to go to this extreme, But from what i have heard about it.... it is an effective way to control or stop the hemoptysis for good . I wish you the best, and have been wondering how you were doing after all you went thru recently. Please post an update and let us know how you are and if you will be having surgery.
 
T

tammykrumrey

Guest
My nephew (Dalton) had his upper right lobe removed thanks to CF when he was only about 7 years old. Being so young, I am not sure as to how much it helped him feel. It is kind of strange, because I just had this conversation with my girls CF doc, who is also my nephew's doc. Kayla is showing lung damage in her right upper lobe, and he commented not to worry, he was not going to be taking out anyones lobe, like Dalton. He said that he has never sent a young child to have that procedure done, unless there was bleeding that just could not be controlled. If my memory serves me correctly, the (other) doctor chose to do the procedure on him because it was scarred up and felt that it would slow down the disease progression in the remaining lungs. Our doctor says that the only reason, in his opinion is because of bleeding that cannot be stopped and that there is no evidence that it would change the progression of the disease.

I do remember that he seemed to bounce back pretty quick after the surgery! But then again, he was only 7...

Good luck. I'll keep you in my thoughts.
 

Lungboy911

New member
Hi Hairgirl,
I never had this surgery but did have the double lung tx. All I can recommend is what I did before my tx. Be POSSITIVE....... My attitude was if this is my time, it's my time, but if not I'm going to be possitive and take advantage of what the surgery can do for me.

You will also be in my prayers,
 

EnergyGal

New member
I second what Hockeypuck (Scott) stated. Exercise if you are allowed and go for it with all your gusto. Sounds like you have the never give up attitude and that is wonderful. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Jem

New member
Well, maybe my experiences might help you with what to expect Hairgirl. I have had two surgeries for the same reason you will be undergoing yours, hemoptysis!

When I was 19 I had my left upper lobe removed after undergoing many episodes of hemoptysis. As far as the surgery, well, as Khristina says, "it's no walk in the park." The first two weeks after surgery I fell very weak and I did experience a lot of pain. But with each passing day I got stronger and the pain lessened. Within a month I was back to my full time school schedule. For the next 19 years I did really well and did not have much bleeding. I had only one major one several years later when I was 6 weeks pregnant, but that was a unique incident and other than that any other bleeds were very minor. I went on to have two more children after the first one with no bleeding issues.

At 38 I again experienced major episodes of bleeding and was in and out of the hospital every 3 months for 2 years undergoing embolizations and IV"S but nothing worked. There was no choice but to remove the rest of my left lung. That surgery was more difficult because they were going into an area that had already been operated on and there was a lot of scar tissue built up. Thankfully the surgery went well. After 5 days I was home from the hospital. For a total of 3 weeks I experienced what I felt was intense pain which was treated with morphine pills. As soon as I got home from the hospital I started to take my pain medication as prescribed but after I week I then spaced the pills further apart (instead of every 4 hours I would go 4 1/4 hours, then 4 ½ then 5 etc... ) because I did not want to become dependant on them. Within 3 weeks of being home I was off my pain med. Upon returning home I also wanted to start exercising. So I started off by walking one minute on my treadmill. What an achievement! Then the next day I walked 2 minutes. The next day I walked 3 minutes and well you get the picture. Within a month I was walking 30 minutes a day then before you know it I was walking 60 minutes a day. Within 5 weeks of surgery I was off with my family on our annual vacation to Lake George NY.

Having both surgeries really improved the quality of my life. I do not miss my left lung at all. I have not had a major bleed since the last surgery 7 years ago. I do on occasion have a streak or a tiny splat of blood, less than a 1/4 teaspoon, maybe 2 or 3 times a year which my doctor then puts me on an oral course of antibiotics to treat.

My FEV is 45 and I will be turning 48 next week. I am very compliant with my exercise and medications. If there is anything else I can answer for you please just ask.

I will be thinking of you and praying that all goes well for you.<img src="i/expressions/heart.gif" border="0">
 

HairGirl

New member
Thanks everyone! it's so comforting to know that others have gone through this and are doing well, I don't doubt that I will do well, I only use half my lungs anyways!!!! I just know that it is painful, so I was looking for the cf perspective on it, thanks again for all the replys.

I had my virtual lung scan today but won't find out about it for awhile, we (dr. and I) had talked about this a couple years back because my hemoptysis was getting bad, but then for the past two years it's been really good, I haven't had an embolization or anything!!!! Then (like always) I'm doing soooooo good, exercising, feeling good, and BOOM! out of blue I have the worst hospitalization to date!!! it's crazy!!!! so surgery came up again and more serious we won't do it for at least a month, I need to get back my strength and health from this last hospitalization.

Thanks again! I'll let you know what my Doc says (in my blog of course).
 

Jem

New member
Hairgirl, I know what you mean about feeling good and exercising and boom! Out of the blue - hemoptysis! No rhyme or reason! It is so frustrating. But you have every reason to be optimistic and believe this surgery will to the trick. It's good to read that you feel this way.

Gain you strength back and get ready to feel great after you have that nasty lobe removed. I look forward to hearing how things are progressing for you.

Sending hugs and prayers.
 

anonymous

New member
Hairgirl i wish you all the best and know you will come through this just fine. Hearing others stories must be comforting for you but obviously you are a little frightened, hell i would be too!!

I have an interesting story about lobectomy's actually. I work with a girl who for some reason other than CF had to have one of her lobes removed when she was quite young. But the strange thing is, that the rest of her lung actually grew and filled up the space where her lobe had been removed and she now has near perfect lung function again!!! 98% i believe!!

I didn't know this was possible......apparently even the doctors were very surprised......so there ya go!! The body is a truly amazing thing and sometimes it's ability to heal itself even surprises the experts!

I agree with the others that a positive attitude goes a long long way and i can see you have that and that you are a very strong girl...good on ya and keep it up!! You'll breeze through this, i have no doubt.

KrazyKat (NZ)
 

HairGirl

New member
Thanks for that inspiring story KrazyKat, I will be repeating that to myself over and over I'm sure. And it is really comforting to know others have gone through this. Gotta love this site<img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
 

LouLou

New member
Hairgirl, What's the latest with your upper right lobe? Do you have surgery scheduled to have it removed?
 

LouLou

New member
Hairgirl, What's the latest with your upper right lobe? Do you have surgery scheduled to have it removed?
 

LouLou

New member
Hairgirl, What's the latest with your upper right lobe? Do you have surgery scheduled to have it removed?
 
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