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DH has been told he needs the top third of his lung removed, has anybody got experience of this?

(17 Posts)
cocolepew Sat 02-Nov-13 17:18:19

He has just been diagnosed with emphysema. The top third of one lung has died and he has pockets of emphysema in both lungs and one has cysts and fibroids/tumours in it.
I'm worried sick sad.

schnockles Sat 02-Nov-13 18:13:16

No experience I'm afraid but bumping for you thanks

cocolepew Sat 02-Nov-13 18:18:57

Thank you smile

cocolepew Sat 02-Nov-13 19:25:29


PacificDogwood Sat 02-Nov-13 19:28:42

If he is getting a big area of emphysema (a bulla) removed then the rest of his lung should be able to expand better and his breathing should improve. Which is the whole point of doing it.

Must be v scary for you both. Is he in reasonable health apart from his emphysema? Does not/has stopped smoking?
Do you know a time frame yet?
Usually there are a few meeting with the surgeon and anaesthetist after various tests so you and him should have a fairly good idea what he is in for before anything is actually done.
V best of luck.

Sidge Sat 02-Nov-13 19:37:43

Aww coco sorry to hear this.

Pacific has given you good advice. If it's any help, I had a patient in for suture removal on Thursday who has severe COPD and had a large (50%) bullectomy 2 weeks ago. He is only 45 and had massively compromised respiratory function. He trotted in to my treatment room (previously he used a wheelchair) and said he felt like a new man. He could hold a conversation easily and was pink and off oxygen.

Everything crossed for you lovey wine

cocolepew Sat 02-Nov-13 19:52:24

Oh thank you so much, that has made me feel better!
Ge is going for an MRI in 6 months to see how it is progressing but I Ithink that's more to do with the fibroid. I wasn't with him when he saw the consultant and he can't remember much (we thought it was asthma so weren't prepared).

He hasn't smoked for about 15 years he stopped when we had DD1. He was about 30 but had smoked since he was 14. His dad smoked around him all his childhood and DH used to be a coal man, so lots of dust.

cocolepew Sat 02-Nov-13 19:57:33

Sorry posted too soon. He was told he had a small bulla 6 years ago, it came to light after an xray after an accident. He had a terrible chest infection 10 years ago and I think he had an asthma attack then. He was seeing an astma nurse at a clinic who told him there was nothing wrong with his lungs and took his inhalers off him.

He went to his dr because he had a pain in his lungs. He has NF1 which is probably where the fibroid comes into it.

He is healthy enough apart from not breathing very well!

He has a brown inhaler and the one that you use twice a day.

lljkk Sat 02-Nov-13 19:59:15

Good luck. flowers

cocolepew Sat 02-Nov-13 19:59:45

I'm worried about his life expectancy to be honest. I'm scared he will be life limited due to this, he's only 45.
I really need to stop Googling blush.

PacificDogwood Sat 02-Nov-13 20:03:39

Yes, any solid tumour is more likely related to his NF1 and not emphysema. I have no idea how that would be treated surgically.

Has he been tested for alpha antitrypsin deficiency? That can predispose to emphysema in the younger person.

Asthma/COPD/emphysema all can have v similar symptoms, but are quite different in aetiology and often difficult to tease apart.

The fact that he does not smoke now is the single most important thing to preserve his breathing.
Is he to have surgery before or after the repeat MRI in 6 months' time?

And btw, it's well known that people remember less than a quarter of what is being said to them after a significant diagnosis has been relayed. That's why several meetings are so important and it helps if he can have another person with him to be another set of eyes/ears wink. And write everything down: write a list of questions in the run up to appointments so you don't forget to ask something crucial when flustered during the consultation. And write down the bullet points of what is being said.

PacificDogwood Sat 02-Nov-13 20:04:47

Yes, stop googling <stern>

You are not interested in statistics, you are interested in what is going to happen to your DH. And nobody can tell you that. Try not to get too far ahead of yourself if you can help it. thanks

cocolepew Sat 02-Nov-13 20:11:52

Thanks Pacific.I don't know what his blood test were for, he had a lot done at his lung function test.

The dr said to think about the surgery but DH thinks he said it would need to be done within 3 years.

You're right about the satistics <stops googling immediately>.

I wonder if we would be able to get an appointment to see the consultant again for a chat or would his gp be able to tell us more. Or maybe we should want until his mri <head explodes>.

Thank you lljkk smile

PacificDogwood Sat 02-Nov-13 20:15:15

Why don't you let things sink in a bit and if you feel you and/or him need more information before his next appointment ring his consultant's secretary and arrange to speak to him? This could be an earlier clinic appointment, an informal meeting in his office/on the ward or even by telephone/email.
You don't ask, you don't get wink.

I wish my boys would listen to me like you do... blush

notapizzaeater Sat 02-Nov-13 20:17:51

Not got experience of this but my mum had half of her lung removed (continual pleurisy rotted it) - this was over 25 years ago and she's a perfectly healthy 62 year old, hiking 10 mile plus 2/3 times a week. Only downside is she is prone to chest infections if she has a cold.

cocolepew Sat 02-Nov-13 20:28:59

I just asked him again (I swear its like getting blood from a stone). He's on the waiting list for the mri and then he's seeing the consultant in 6 months so we will probably wait and see.

Thanks everyone flowers

Khara Sat 02-Nov-13 20:32:43

Not the same thing but my dad had half a lung removed due to TB in the 1950s when he was 25. He lived until he was 80 with very few health issues at all.

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