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Scared and confuzed!

 
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peanut Reply with quote
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Joined: 24 Apr 2006
Posts: 9

PostPosted: Thu Apr 27, 2006 7:44 pm    Post subject: Scared and confuzed!
 
Hey!...
im kinda scared of getting another sp since they told me the last time i had 1 percent chance of getting it again and i did...i mean yes its been almost 3 years since i got one...but the doctor told me if it would ever to happen again that i would need a lung transplant....i am scared of that...but sometimes i think of putting my name on a donor list now and try to get new lungs for myself..since i cant do anything without being breathless..you think that would be a good idea? or just keep on letting it go since im healty right now and well?
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Rossoe Reply with quote
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Joined: 05 Feb 2006
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Location: Devon, UK

PostPosted: Thu Apr 27, 2006 8:31 pm    Post subject:
 
How old are you - if you don't mind me asking ?

Lung transplant is very rare, and would not be the usual procedure for SP's in fact i have heard of no one having one ! You should not be keen to go for such extreme surgery, lung transplants are very tricky with alot of tissue rejection problems and life expectancy is probably cut right down. I was told I had only small % risk of recurrance and I also managed to get the same old problems cropping up - but transplants have never been mentioned from any surgeon i've spoken too.

I'm assuming from your other post that you have had a small piece cut off the top of your lung ? has the doctor not mentioned pleurectomy ? have a read through the "Medical Procedures" section to give you an idea of the different types of surgery available. and bear in mind that research is racing ahead in the development of drugs to repair damaged lungs, so my advice would be to avoid surgery where possible as long as you can get by without it interfering with your life too much.

Try changing your diet and lifestyle before even considering further surgery. I'll be adding a Nutrition and Vitamin guide soon.


Last edited by Rossoe on Tue Jun 20, 2006 10:22 pm; edited 1 time in total
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peanut Reply with quote
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Joined: 24 Apr 2006
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PostPosted: Thu Apr 27, 2006 8:39 pm    Post subject:
 
...i am 20 years old...

and yes i only have one lung and a half...so i have a diffuculty breathing when im doing SOMe stuff...and my last surgery the doctor has told me that if it would ever happen again that i would need a lung transplant...cause there is nothing else they can do?...sorry if my english spelling is bad,,,im french.. Very Happy
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Rossoe Reply with quote
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PostPosted: Thu Apr 27, 2006 9:02 pm    Post subject:
 
Tell me more in regard to the surgery - Why did they cut half the lung away ? I assume there was a lot of damaged tissue, but usually it's a relatively small Wedge resection that they take away. was it the top or bottom half they took away ?

Bear in mind a lot of people survive quite healthily with just 1 lung !

For now things which you can do to reduce lung problems are - cut down stress, increase sleep, eat super healthy inc loads of fruit and include a good quality multivitamin into your diet, don't lift anything heavy, and keep active. Dont let your lungs weigh heavy on your mind, it can be more damaging than the condition itself.

My goal is to bring attention to this condition and get the deserved research and funding so that we can bring an end to all this worry and frustration. Blebinfo will work tirelessly until that goal is reached Wink
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peanut Reply with quote
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Joined: 24 Apr 2006
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PostPosted: Thu Apr 27, 2006 9:31 pm    Post subject:
 
Hey..

hmm...well the first surgery i got it was on my right lung...they only put the chest tube for a period of time then took it out...after a weeks time that it was out i got another sp on my left side...they also only put the chest tube....after that still on my left side they put a metal shield over my lung so if it would happen to collape again it would only collasp not more then 15%...and the doctor told me that the percent of collapsing again would only be 1%..when he told me that i was super excited and thought it wouldnt happen again...but the day of my one year..of course...guess what lol...happened again...and at that point they did i huge surgery and i aint quit sure what they really did but all i know i had 3 chest tubes...and they had taken out half of my lung...probably where all the damage was...my fist sp the bleb was about a twoonie big...then so on...i got huge scars...where i had the huge surgery...i was in intensive care for about a month...they couldnt figure out why it was collapsing...they thought of cancer,chemicals in the hair products..cause my mom has a salon in the house...but none of them matched up..but for sure i will try the suggestion you have given me they might work with my breathing..
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peanut Reply with quote
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PostPosted: Thu Apr 27, 2006 9:32 pm    Post subject:
 
oh and yeah it was the top of my left lung...
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Scout Reply with quote
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Joined: 25 Apr 2006
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Location: Juneau, AK

PostPosted: Thu Apr 27, 2006 10:36 pm    Post subject:
 
I had part of my lung resected as well - Had a small 2-5% portion removed? I had some really good pictures of the whole surgery, both my first and second ones, I'll have to see if I can get them again.

Anyways, on my second surgery they performed a pleurectomy as well. Not so fun Razz
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peanut Reply with quote
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PostPosted: Thu Apr 27, 2006 11:37 pm    Post subject:
 
yeah try to get them pics...ill like to see them...
Very Happy
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Ceebee Reply with quote
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Joined: 05 Feb 2006
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Location: Norway,Oslo

PostPosted: Fri Apr 28, 2006 6:21 am    Post subject: hellooo
 
Hello peanut.

I had Vats surgery and they removed a small portion of my top lung, but never in the size of a half a lung.
It seems quite extreme to do so.

But i agree with Rossoe on this point, try to change your diet and work out a bit.
I have never heard of a lung transplant, espesially if they cant figure out why your lung keeps collapsing.

Do you have any other diseases? like allergies or something?

I have had 2 ops ( 2 vats on the same side) and 3 chest tubes over 3 times collapses.

But it was never a question about a steel plate or even nail in my case.

hope you get better man, its hard when this happens in your age.
_________________
Contact me for ANY questions.
4 Sps. 2 Vats.
facebook: Christian Birkely
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jsw Reply with quote
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Joined: 17 Mar 2006
Posts: 13
Location: Seattle, WA

PostPosted: Sat Apr 29, 2006 4:55 am    Post subject: heavy lifting
 
Rossoe,

Why is heavy lifting bad for lung health? I'm guessing halted breathing during a lift causes too much pressure on the lungs, but what if breathing is continuous?

jeff
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Scout Reply with quote
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Joined: 25 Apr 2006
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PostPosted: Sat Apr 29, 2006 7:36 am    Post subject:
 
You put pressure on your lung - plain and simple - There have been heavy lifters that have collapsed their lungs by putting too much stress on them.
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Rossoe Reply with quote
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PostPosted: Sat Apr 29, 2006 7:13 pm    Post subject:
 
When most people lift they often perform the Valsalva maneuver which is effectively attempted exhalation against a closed mouth and nose. this results in a drastic increase in pressure in the thoracic cavity. - which may lead to rupture of blebs, this together with the obvious strain you put on your body during heavy lifting seems to aggravate lungs that have inherent weakness after SP's or surgery.
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Sam Reply with quote
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Joined: 12 Feb 2006
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Location: Brussels/London

PostPosted: Mon May 01, 2006 5:12 pm    Post subject:
 
Wow, I've never heard of anyone needing a transplant - that is heavy duty repair work for an SP. Where do you live Peanut? You said that you are French speaking - do you live in France?

I've noticed that I can barely lift my suitace (this is true before I had SP's as I'm a girl and pack too much...) withouth hurting my lungs, when I lug my bags around I find that my lungs suffer. I was back in the UK a few weeks ago and dragging my case around the underground - up and down steps was really bad. I think this has got worse since I had surgery to fix my lungs. I now make special efforts at the airport to get a trolley for my bags etc. I avoid lifting anything too heacy now.

Good luck Peanut - am fascinated to hear of an SP patient having a transplant. Keep us all posted.

Sam
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Anonymous Reply with quote
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PostPosted: Wed Sep 15, 2021 1:07 pm    Post subject:
 
I was told I had only small % risk of recurrance and I also managed to get the same old problems cropping up - but transplants have never been mentioned from any surgeon i've spoken too.
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