Trying to support dad with COPD

[Bondy2]

Sorry for a mammoth post just looking for advice to support my dad. Diagnosed 10 years with moderate copd. Upto now stayed relatively stable using just a quick acting inhaler. However last year gp put him on a longer lasting inhaler and again seemed to stabilise an issue he was having at the tme. However a couple of months ago got a really bad cold/cough and needed steroids but nor anti bs as no infection. We went to Spain for a couple of weeks and he seemed fine. A couple of days back in uk and starts with raging cough, breathlessness and a wheeze :-(! Went back to gp got steroids anti bs and anti mucus tabs. Seemed to improve but now off steroids and anti bs and wheeze hasn't totally gone. I was after some advice as he won't ask gp and won't even go to gps without constant nagging from mum. Is thus normal progression of copd or something more sinister? I'm constantly reading but can't find an answer to my question. Hope someone can advise and also how we should deal with it. He isn't under hospital only gp. Thanks

[2greys]

He now needs to get referred to a specialist by his GP, after making sure any infection has gone. He needs to see a consultant to assess his condition to receive correct treatment, it is the consultant who tells his GP what class of drugs to prescribe to him. He really does need to do this.

[Bondy2 in reply to 2greys]

Hi 2greys thank you for your response. He was diagnosed by a specialist 10 years ago but then left in the hands of his gp. I'm a type 1 diabetic and have to visit hospital twice a year for blood tests and foot checks to make sure nothing getting worse but dad never been back. I've begged him tonight to go back to gp and explain that his wheeze has nit entirely gone so I'll see if he does and if not nag some more. Thanks again.

[mrsmummy]

Infections can easily take 2 or more courses of antibiotics, especially if the sputum wasn't tested to find the right one for the job. Even then it often takes a 2 week course. Do encourage him to return to the GP because if the infection is still present he will not feel at his best. It shouldn’t be ignored.

[Bondy2 in reply to mrsmummy]

Hi Mrsmummy thank you for your response. Gp actually said that his chest sounded clear but gave him anti bs as a precaution having already had steroids with no improvement. I know he's had to have 2 lots of anti bs in the past to shift a chest infection when docs heard it on his chest. It's the wheeze that's worrying me - and him truth be told - but mum nags and he digs his heels in and doesn't visit doc quick enough before it gets a good hold. Is the wheeze a general progression or with 2 lots of steroids anti bs and anti mucus drugs should it go? Thanks

[mrsmummy in reply to Bondy2]

I would be pressing for a referral to a specialist respiratory consultant. So many things can cause different symptoms. His wheeze needs to be investigated. Why not ring the BLF helpline for further advice? They work office hours and can be reached on 03000 030 555.

[Bondy2 in reply to mrsmummy]

Thanks mrsmummy yes I saw there was a helpline. I'll give them a call tomorrow. Thanks again.

[hopetorun]

Treatment moves on and in 10 years i think there has been significant changes. Your fathets lung condition may not have changed much. But does need to be checked by a specialist

Flying is never good for me i always have an infection afterwards. This takes about 6 weeks to settle. Hope you get some answers.

[Bondy2 in reply to hopetorun]

Thanks for your ersponse hopetorun. Wow We fly regularly maybe 4 or 5 times a year and 1 of them is longhall. What is it that makes flying so bad? This is the first time he's ever been affected I've said regardless he should be assessed to see what other medication is available. He has it in his head that he's going to be addicted to the steroids inhaler!?* I've tried to explain that it's not like that and even if it was and helped then so be it!! Another thing that neither my mum nor dad will get is that their main form of heating is a coal fire and when I go in can literraly taste it but neither of them can even smell it!! They have no other heat in the house unless they plug in a little electric radiator so their main room is boiling and the rest if the house is freezing!! They say how do you think we went on when we were kids??? I say but we're now in the 21st century!!! I'll keep on but not sure I'll get very far :-(! Thanks again x

[hopetorun in reply to Bondy2]

Hi the reason that flying can affect people with lung condition is that the alititude in the cabin is about 7000 ft which quite different to a few hundred feet above sea level. So the changes in air pressure can make it difficult to breath.

[PollyP]

As above , do request a review of your Dad's clinical condition by a consultant, do be firm about it! Such a review may also give access to local Respiratory Team too!

There are many up to date medications which may help your Dad...he deserves to have the opportunity to have the best care.

If you use Facebook there is a fabulous page called COPD UK for sufferers and carers alike. It a closed group too- it is an amazing help.

Pp

[Bondy2 in reply to PollyP]

Hi Polyp thank you for your response. I've had another chat today about it and he insists he's not much different to what he's always been! So I've said this maybe so but it is different, you haven't been assessed since diagnosis and so you need to go. He has to sort his flu jab now so fingers xd he'll do both at the same time. I'll also have a look at the fb page. Thank you x

[PollyP in reply to Bondy2]

Hi Bondy,

Oh how frustrating for you! So tough to have to stand by and watch your Dad be poorly.

Every year there seem to be new drugs and new methods to help us.

Take care of yourself and I wish you well x

We are here if you need us

Pp.

[Phil40]

Hi, I am the carer for my 80 year old Mum who is living with COPD after being diagnosed at least 4 years ago. I don’t know how old your parents are but I have observed a lot of similarities in the behaviour and reactions of patients of around my Mums generation. Your Dad sounds somewhat similar too!

Because COPD is a diagnosis that can encompass so many different and subjective symptoms there is no ABCD type progression. Whilst there are obviously commonalities every case is different and this is why it is so important to have the appropriate care in place. It is a progressive degenerative condition with a different time frame for everyone. But don’t panic about that because isn’t that life anyway?

There is not one stand alone test to give a definitive answer to what is happening or where a patient is in the scheme of things but there are a lot of different measures used that give a good picture of condition and the best treatment options for a patient.

What I have learnt in the last 2 years caring for Mum is this:

She lives in an alternative reality called Denial. It is a very nice place because all is good; her health is ok; she just gets slightly breathless in the mornings; my brother is a wonderful son who is just a bit busy so obviously cannot visit but does really care etc etc.

If you don’t admit something it doesn’t exist apparently.

Unfortunately not accepting she has a condition that is getting worse and worse has led to her not asking for nor using the help available until her reserves and resources physically have been pushed to the absolute limit and she is now seriously ill.

I had to insist that I attended every appointment with her when it became apparent that when I finally persuaded her to go to the doctor she was not actually being honest with them about her health. And the doctors I have met will not look for work by questioning her version of things.

So I did A LOT of reading about care pathways; respiratory teams; NICE guidelines for COPD and started asking the health professionals to do their jobs properly. Because what is supposed to happen and be available is not a secret but no one will tell you either.

GPs are not experts at COPD. If your fathers condition is progressing, which it will, he does need to see the relevant respiratory specialist. Go to the GP with him and tell the GP to refer him there. It’s in the NICE guidelines. Do not get fobbed off, keep on at them until they want you to go away. Do not let them treat your dad or you badly; be very assertive about getting help.

I worked in GP surgeries and the health care system and it is the squeaky hinge that gets the oil!!! Get him to be referred to Pulminary Rehabilitation courses so he can learn about his condition and manage the symptoms properly.

I basically had to tell my Mum that if she did not start looking after herself she was going to significantly shorten her life.

I wish you luck and I have had the most frustrating couple of years ever. I never thought I would actually catch my Mum lying to me about what she has told the doctor at an appointment but I did so now I go every time.

Your Dad has his reasons for wat is does or doesn’t do and maybe it’s like my Mum; if you don’t admit it, it don’t exist. I had to tell Mum that even if she didn’t care I was quite keen to have her around as long as possible and that wasn’t going to happen the way things were.

Good luck and learn all you can from reliable sensible places such as here so you will know what is going on as best as you can.

Hope that all makes sense, sorry it’s so long. Phil

[Bondy2 in reply to Phil40]

Hi Phil yes all makes sense thank you. My dad is 75 and whilst he is much better at looking after his health than my mum he has got a "it'll be alright attitude!! He's very much of the old school that you carry on regardless. He had smoked from being about 14 and also worked in a foundary most of his life and with asbestos in his earlier woking life. No matter what we said it made no difference with the smoking until I became pregnant 12 years ago and that gave him the push to stop thankfully. I will keep pushing and hopefully make him see sense! Thanks again x

[Phil40]

Hi, also if you can get him to go get a referral to Pulminary Rehabilitation course; there are supposed to be available everywhere I believe. The GP can refer l wish I had known about them years ago. It was the specialist nurse there who really helped me to join the dots about what Mum should be doing and receiving healthcare wise; and what was obviously missing. It was such a mess that I couldn’t make sense of anything; for instance Mum had an oxygen concentrator at home which was not regulated nor monitored by anyone!!! I am not joking; and she did not have a clue about how much she should use it etc etc!!

The Rehab course teaches breathing techniques; ways to exercise and also education around COPD; what it means and what will happen. By the time I got Mum there she couldn’t really attend as she is so breathless; maybe if she had gone a couple of years earlier....?? May have helped. Hope things stable again. Definitely puts one off smoking caring for someone with COPD!

Phil

[Phil40]

I see your Dad worked with asbestos as well! My uncle died of asbestosis after years of working with it and inhaling it.

Took them seven hours to cremate him.....

[Phil40]

Sorry about that one

[Bondy2]

Hiya Phil thanks for all this. Yes I'm really confused about everything too. My friend is a pulmonary nurse and she says referal to the breathing classes are usually given if you get hospitalised. All his care had been under his gp and other than diagnosis never been to hospital thankfully. I didn't understand the use steroids alone. I thought they were to take together but this now makes sense! Now this is what I'm not understanding to my dad the breathlessness was new and scarey but the doctor just kind of shrugged it off as a blip so they obviously weren't overly concerned by it all even though he was! As I said they've prescribed him fostair which he has now been on a week and a half and he says that he us greatly improved but not quite back to what he was previously probably 95%. Is this normal or does he need to go back. He's only on this 1 inhaler with his blue 1 if he needs it. Usually only has a puff or 2 of blue if going out walking or in cold which he's only started doing that last couple of years or so so must have felt the need to start doing that! He has a spyrometer test next week and I've spoken to a blf nurse of what to ask so we'll see what comes of that. Thanks again Bondy

[Phil40]

Hi, is 95% the oxygen saturation level? When my Mum was admitted Wednesday she was 80% and lower! I am beginning to suspect she could just about survive on the moon.

Generally she is running at 88 to 92% on a good day!

Ah the happy memories of 95....

Long may it stay there. Any idea on his FEV 1 scores etc?

And the altitude flying in your average jet is a lot more than 7000 feet; more like 24000 or something but I have heard that they pressurise the planes and supply oxygen and meals and all sorts these days so everyone gets there alive without freezing or asphyxiating. Except the budget airlines maybe.

I bet it’s the horrible air conditioning in planes, especially long haul. They make me feel absolutely awful and I am apparently ok regarding lung function. Dries me totally out and gives me a headache I hate it.

So I would suspect that if you take advice on it an oxygen sat of 95% may be very safe to travel above 7000ft.

I know the heights, by the way, because I skydive and the highest we can go in our plane without oxygen is about 12500ft at which point we jump out and this gives about a minute of free fall.

We don’t get meals or anything either.

7000ft is called a Hop and Pop really; hop out and pop the chute. Oops I went off Subject there.

Happy Days.