Well everyone in six weeks time i will have to make up my mind if I want lung reduction or not I cannot begin to tell you how scared and distressed i am about this, please all you people out there give me some positive advice about this operation, it's not the actual operation that I am scared about but the post operative condition for want of another word, I will be in I know I will be quite ill for a while but I can't seem to be able to cope with this at the moment and no matter how much I tell myself it's going to be ok it still scares the life out of me, just talking to the consultant today i thought that all the room must have heard my heart beating and I ended up in tears and so did my daughter, any advice would be much appreciated
Lung reduction: Well everyone in six... - Lung Conditions C...
Lung reduction
Oh bless you 
xx I am sure someone will be along to help you and give advice from personal experience.
You are all such lovely people x
Hi Meike,
That you are being put forward for Lung Volume Reduction Surgery suggests to me that you are in a similar state to myself 18 months ago. I was lucky enough to be a suitable candidate for Zephyr Valves to be fitted. I imagine that like me the damage to the lungs is such that the internal support structure allows the lungs to hang so low as to be permanently sitting on the diaphragm. This means that for every breath, the diaphragm has to lift the weight of the lungs as well as compress them to affect air change. This is very tiring, and leads to irregularities in breathing.
A short time ago, I was having a conversation with a friend who works throughout the UK and Europe. He is a consultant theatre technician who operates specialist diagnostic equipment that helps surgeons to decide who is or is not suitable for pulmonary valves. We were talking about alternatives to fitting valves. His opinion is that his first choice out of what is currently available would be valves, because they are reversible (can be taken out if something goes wrong) or straight to Reduction Surgery, because all other strategies end up there eventually. The advances made in operating techniques over the last couple of years mean that the operation is now so much less traumatic so healing times are days instead of weeks. Keyhole type surgery is used instead of open chest. Pain management is much better than before. There is much less bruising for the body to deal with.
After the operation, you will find breathing so much easier, because your diaphragm is not having to lift the weight of your lungs for every breath. Also, because sections of the lung that were not working before, because they were permanently compressed, are now coming back into work, so each breath has better gas exchange (air to blood). As a result, your oxygen stays higher, longer. You will still have to work on your fitness, but you will be starting from a higher level. You will be less dependent on drugs to help with your breathing. I went from using my nebuliser 5 times a day to not at all in just a few weeks. You will find you are less reliant on oxygen. Your confidence will build. You will find yourself doing things or going places that you wouldn't have pre-op.
Mentally, it is hard to prepare yourself for an operation unless you have experienced it previously yourself. When I had my valve op done, physically I was so low that it was seen by some as my last chance. My personal horizons were so close that I didn't really care, I just did as I was told. I am now so grateful that those doing the telling got it right on my behalf!! Later, I had to have cataract surgery on both eyes because of damage cause by steroids. I was apprehensive going into the first op. After all, nobody willingly has someone poke them in the eye, do they? Well it turned out to be a painless experience, with amazing benefits. So much so that when I went for the second eye to be done, I was really looking forward to it. When you look back after the op is done, and you are healed up, and progressing with you physiotherapy, you will wonder what it was you were worrying about.
Meike, I hope this helps. If you want a voice contact to talk about things, I am on Skype, and will talk to you if you want. In that case ,send me a Private Message, and I will send you the details. Of course any questions that are not too private, ask here and I will answer them if I can.
breathe easy
johnwr
Hi johnwr, how do I send you a private massage, I replied to you but I think it went into my own box lol I am not used to this new site I don't have Skype but I would love to ask you some more questions. Your. Reply was better than anything the doctors have said to me so far. You explain it very well
Hi Meike
That's one hell of a decision you have got to make there. It comes down to picking the lesser evil. Can you live with your condition as it is? Yes? No op then. Will an operation give you a vastly improved life, albeit with a lengthy post-op recovery? Yes? Go for it. The best idea is to get a piece of paper and make a list of advantages and disadvantages. It won't decide for you but it will give you a better focus on the problem. Don't rush into a decision. I wish you all the luck in the world and the strength to make the right move.
Bobby xx
Hi Meike again.
John posted his reply while I was writing mine. I defer to John's superior knowledge on this subject so please listen to what he says.
Bobby xx
Hi Bobby,
I wouldn't call my knowledge superior to anyone else's, just my experiences. Everyone who goes through a testing time sees it differently. It seems that currently I am the only one on this site who is this far down the path. But thanks for the compliment, it is appreciated.
johnwr
Hi I haven't been through this but a good friend of mine has very recently. She had to have half a lung removed due to damage from pneumonia. She was terrified but went ahead. The operation went well. She was recovering for about 6 weeks and didn't really feel herself until about 8 weeks. She had painkillers and she wasn't in much pain which did decrease anyway in time. She ended up with a large scar on her back and shoulder. She tells everyone now that it was a shark bite!
She is a single parent and she did need help to manage for a while which she got from me and other friends. She was quite emotional for a while and needed moral support as well as practical support. But, she says now, she is so pleased she had it done and it has made a big difference to her life.
I can't tell you whether or not to have it done meike but she is glad she did,
Good luck with it.
Bev xx
Thank you for your concern its nice to know people care
hi Meike, oh poor you.
I'm very sorry I'm totally ignorant of your condition and unable to help you as I wish I could.
I wish you all the very best and look forward to hearing your decision. peeg xxxxx
Hi, I am on the list for a lung transplant as I am too far gone for lung reduction. My belief is we are not going to get any better and probably worse so any chances of an improvement have got to be worth a try. I hear from people with good and bad experiences surely the chance of a better and hopefully longer life have got to outweigh the risks. Good luck with your decision. Love Susie
Hi Meike
You may be interested in my experience.
I had two lobes removed when I was twelve years old. I had a very active and healthy life until five years ago when my disease returned (Bronchiectasis). I am now seventy years old and would certainly have lung surgery again if it was offered to me.
Hope this helps.
Tamara
Hi tamara, it's so good to hear from someone who has gone through this type of surgery, and you sound so positive you give me the courage I need To see this through and believe me it's courage I need at the moment, thank you for taking the time to get back to me
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