My OH had a virus followed by a bad dose of pneumonia last year which left her with damaged lungs and breathing problems. She’s still frustrated at her complete lack of energy and weakness. She has ordinance for visits to a heart specialist and a lung specialist. We’re hoping to get an appointment to see a heart specialist soon but lung specialists seem to be very thin on the ground and the nearest is too far away. We’re thinking a ventilator of some kind might give her a bit of help. There seems to be numerous types available at a big range of prices. So I’m hoping someone on SF has a bit of experience that might put us in the right direction.
I don’t think you mean a ventilator, you might be thinking of a CPAP machine.
The first thing is to get a diagnosis of the problem by an experienced clinician and then to figure out what, if any treatment will help and not random suggestions by friendly and well meaning - but not medically qualified, SFers.
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We’re just trying to find out what if anything is available The CPAP machine doesn’t sound too useful as sleep is not a problem
If her lungs are congested and irritated after the pneumonia she might need to use a steroid inhaler, such as (for example) Fostair which I take for my (very mild) asthma.
But I agree with Billy 100%, she needs medical diagnosis and advice SAP rather than attempting anything DIY.
If the nearest specialist is some distance away can you get help with transportation?
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Just going shopping is very exhausting for her so seeing a specialist after at least an hour’s journey is very daunting for her especially if there is no positive result. This is why I’m trying to find out what if anything can be done. No question of DIY which would not be possible anyway.
My sympathies…
ETA: My local GP surgery here in Surrey has an “asthma nurse” who looks after people with breathing difficulties - obviously she is not a lung specialist, but someone like that might be able to help with palliative treatment if there is a similar service near you?
Just to make life easier until you can get to see a specialist?
I know a few people that have gone through this with lung issues after 9/11 and others after covid. There is nothing you can try without going to a specialist to see what the issue is. A CPAP might help or she might need to have a oxygen tank. It will take mutiple tests most likely. The best i guess would be if you could get your local primary to order some tests that can be sent on before the actual appointment. I am not sure where you have been but an hour to a good specialist doesn’t seem that long but I understand how not getting answers right away would be daunting.
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You really need to talk to your medicin traitant. Has she had recent blood tests? And has the MT listened to her lungs recently? An MT might also be able to secure an earlier appointment if you push a bit.
A long day to see a pneumalogue but sounds as if there are few alternatives as without a better diagnosis you are wandering in the dark.
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Absolutely.
Since a kid I’ve had asthma, I blame London smog. Apart from spring and autumn chest infections it retreated from my mid twenties until my mid sixties then it came back with a bang. I won’t bore you with my lung history, but I’ve two pulmonologists both excellent, and I’ve been round the houses on lung matters, including recent surgery.
Ventilators are for intensive care units, you are intubated, put in induced coma and the machine breathes for you, or rather pushes air in and out of your lungs. They aren’t a do it yourself option. Using oxygen at home is an option but I’m sure that would only be on the recommendation/facilitation of a specialist.
I can’t overemphasise how important it is you get her to a pulmonologist ASAP. Every day wasted could be doing further damage to her lungs.
By way of a scary story, I was recently informed by an old school friend of mine that he is now on oxygen 24/7. That means he has to carry around an oxygen machine like this whenever he leaves home, forever.
Don’t faf about Geoffrey, get her to a specialist.
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What about looking on Doctolib ot Maiia? There are other apps too that have been mentioned on here to find a apecialist.
What does your MT say ?
Which can be caused by asthma, COPD, emphysema, lung damage etc. Probably asthma is the easiest to alleviate with bronchial dilators or whatever. Quick puff and you’re done. But as we age the old lungs, which have been sucking in a blowing out pollution for many decades just clap out, more in some than others, and stronger remedies are required to slow the deterioration. As ever, better to catch it quick 
True. But my point was that a local medical practitioner or nurse might be able to off er some short term help or advice.
I was not suggesting that asthma medication was the answer.
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Oh I know Chris, I was just commenting on asthma being relatively easy to address vs the others. Interesting that asthma is becoming so widespread now there are specialists in primary care. There are many theories why that is.
In France I see MTs just as the referral services. Other than for minor or run of the mill matters, their job is to spot the dangerious stuff and get you off to a specialist ASAP.
Isn’t that the same in the UK? For me, the key thing is I am in control of who I see. Also, I keep my own scans/blood tests etc. and copies of the compte rendu from each specialist.
The huge advantage of the French system is time and I think our MT has a much better overview of our state of health than anything I ever used to find in the UK. Maybe we’re just lucky in our group practice, but recently OH had a half hour consultation with our MT (I was with him to interpret). During that half hour we covered: kidney cancer, high blood pressure, heart blood vessel calcification, hyperthyroidism, cataract op - each one dealt with thoroughly.
Could of course also be a lingering infection that an MT can tackle effectively.
I really don’t think so Jane. The MT has referred her to a cardiologist and a pulmonologist which means he thinks it’s serious. The pneumonia was last year and she still has breathing problems.
You can throw as many antibiotics as you like at some lung problems and only be addressing the symptoms, infection, and not the root cause. My Dad died due to septicemia caused by a lung infection due to COPD. On Saturday he was chesty but well, on Friday he was dead in ICU, after them having spent six days battling to save him.
This is not an area to faf around in.
I won’t comment further on this topic because I think I’ve made my point, which is “Geoffrey don’t mess around, get her to a pulmonologist now”.
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Neither of us know as we are not doctors with her medical tests in front of us! I agree that she needs to be seen asap, but I wouldn’t rule out anything. I have had TB, double pneumonia twice, too many bouts of bronchitis to mention, and have quite a number of nodules scattered through my lungs. All of which has left me prone to lung infections which can linger and wipe me out.
I can understand that, and those symptoms Jane. I sympathise.
But the bottom line for me is simple. Geoffrey is faffing about with a wife that had “a bad dose of pneumonia last year”, has “damaged lungs and breathing problems” and has been referred to a cardiologist and pulmonologist. And he’s looking at bleeding “ventilators” 
We are not doctors, and from the start I thought the only advice we should have been offering was get your finger out and get her to a pulmonologist now. That’s exactly what I would have said face to face. I only mentioned my own experience to try and gain a bit of credibility so he might pay attention and thus cajole him into doing what I would have done immediately after getting the referral.
I was just being too nice as usual 
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Don’t feel you need to answer JaneJ, but hiw on eaeth did you get TB ? I thought it was really hard to get theae days. Or was it hospital-acquired? Scary if so.
Hello Geoffrey, it must be frustrating for you to ask for advice on here and then find you are getting some quite negative comments, but I think everyone is really concerned for your wife and for you. It is not that unusual for the person who is ill to resist getting treatment (which is what I’m hearing about “too far away” and “if there is no positive result”). Your wife may not want to know. You say she is frustrated, yet nothing is happening. Often it’s the woman that makes things happen when it comes to health matters. In this instance you become the one who has to step up and get the diagnosis and it goes way beyond what you are asking for here.
Although your wife may not like it, once you have a diagnosis, your wife and you know what you are dealing with. Knowledge is power. Unfortunately you both are being too negative and passive “what if anything can be done”. At the moment you don’t know! Hence the frustration on your behalf from people here, several of whom have had/have major illnesses and are managing.
You need your MT on board and fast - to help get appointments ASAP (I had to wait months for a cardiologue and a gastro and in both cases the conditions I had were very serious).
“At least an hour’s journey” is nothing in order to see a specialist. We live in Lot et Garonne and our centres of excellence are Agen, Bordeaux and Toulouse - all are over an hour away and some considerably more.
Is being a passenger in a car really too exhausting for her? If so, can you break the journey? Arrange for a wheelchair to be available when she gets there?
When I was diagnosed with colon cancer I would have got on a plane to London if necessary to see the best (I didn’t need to, it’s here in France). She needs to see the best. And soon.
I hope I too have not come across as negative, and that you can hear the concern behind the tough words.
Bon courage to you both.
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