hi
how do you get on lung transplant list or does doctors decide if you go on it or not
transplant: hi how do you get on lung... - Lung Conditions C...
transplant
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billy11153
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Specialist and drs decide hun, it depends on how old you are,If your lungs can are strong enough,and how ill you are...Talk with your g.p and see what level copd you are.I am in gold stage (latter) this is why I am having it done as there is nothing else they can do for me..Hope this helps. Kindest Regards Laura x
amberbond in reply to
Hi, I have COPD my stats are usually 92% if I am well though can drop to 86%! if I get too energetic too quickly, so have to pace myself. I have had a heart scan which indicates there are no problems and have been put on waiting list, I am 59 the cut off point I believe is 60! So hopefully, even though petrified, I may qualify for a transplant. I have been very active all my life and find it very frustrating when I become so breathless, at times I feel like this is the end! It is so scary, my family on my mom's side have nearly all had some form or other suffered with/died with lung/breathing problems. From your photo, you look a lot younger than me, wish you all the best and good luckxx
in reply to amberbond
I wish mine only dropped to 86%.....if I am not careful I can drop to 65% if I move too quickly!.....and that is on 4lpm of oxygen 24/7.
amberbond in reply to
Oh I am so sorry to hear this, you must feel absolutely awful!! I can't stand it at 86%. Usually after rest I recover slowly to reach 92% again. However due to this happening to me I have got ambulatory oxygen (it only lasts about an hour or so) to go shopping, however I find it very embarrassing going in supermarkets with wearing the tubing. One little boy said to his mom "Why is that lady got a tube up her nose?" I felt awful and wanted to cry. It may seem daft, so very reluctant to go out now. My poor husband is a star and does the main shopping, do not know what I would do without him, he is great and also is a mega star with some of the heavier housework, vacumming cleaning higher up etc. I do persevere however to do most things where I can. I have got oxygen concentrator to use at night but only 0.5 along with my NIV nebuliser attached. I find my most difficult time is having a shower, well its the after effects, sometimes I feel like I will never get my breath, quite frightening, so I find I have to psych myself up, take a couple of whiffs of ventolin and get in there!
Then obviously it takes me ages (being a woman) to blow dry my hair etc. Sometimes i feel like I have just done a days work!
in reply to amberbond
Believe it or not but you can wear your tubes in the shower if it helps.....I know I do and the shower is fitted with a seat. The tubes are easy to wipe dry when you come out.....give it a try!
amberbond in reply to
Thanks for the tip.
in reply to amberbond
I know what its like having a shower,bliming hard work!! I had shampoo on my head and couldnt breathe,had shower door open to rinse my hair and floor was soaking..I felt as if i was going to meet my maker! Think I slept for 2hrs after,its no joke..I know exactly where your coming from,I take things as slow as i can and hum in my head when showering now...For some strange reason it works...Take care xx
Mike71 in reply to
Why not have a bath instead of a shower? I find it a lot easier.
in reply to amberbond
HI Amber,I am 56 and lung disease is on my fathers side,He died of Emphysema when I was young...I am in very severe gold stage,and am going for assessment on the 14th at Brompton..I sincerely hope you qualify for a transplant,.Its so scary when you can't breathe sweetheart,and feel as if your drowning.Al the best and good luck,keep me informed..Fingers crossed.Laura xxx
amberbond in reply to
Thankyou porche296, its a waiting game at present. Its nice to know that other people realise how difficult and scary it is, thanks for your support.
Hi Billy, your doctor will refer you to a specialist and he will refer you to the transplant clinic if you meet the criteria.
My consultant say's he refers people on for transplant if their lung funtion ( 'TLCO' gas transfer is around 30% or below).
The transplant team then do lots of tests and decide if your suitable or not
Good luck Billy
Tony
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