Family link to Copd: I have been trying... - British Lung Foun...

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Family link to Copd

Spoticus profile image

I have been trying to find info on family link to Copd as my requests to be referred to a Consultant has been answered with various excuses. To be fair, I am on Anora Ellipta & managing Well on it which is the reason my Gp gives me . She said they have to try & treat me 1st & if not Successful then she will refer me . Although since March of last year I didn’t see a Gp at all , spoke to at least 5 different doctors & finally started to feel better in February this Year thanks to the Respiratory Nurse who I asked to see . I went armed with information I had seen posted on this Site & she prescribed the Anora & referred me to a Pulmonary Course , although a huge Waiting list . My Question is , My Mother & Sister had Copd & now Me & my Younger Brother have it . He has had Asthma since birth & was told a few years ago that he also had emphysema, I have seen it mentioned on here about a family link & perhaps different treatment?? But cannot seem to bring up any information on Searches . Hoping one of you can help.. Angela xx

63 Replies

There is a genetic condition called A1A antitrypsin deficiency which makes those affected more likely to develop copd or other respiratory conditions. Your GP can easily request the blood tests and some hospitals are centres for the study of A1A. Your GP needs to get off her backside and get you to a good consultant.

Spoticus profile image
Spoticus in reply to Littlepom

Thanks Littlepom, seeing the Nurse Wednesday so will have a word with her x

It looks like scientists may have found a genetic link from this article, although we are all still waiting for a cure. Whether there is a familial link is not given though,

bumc.bu.edu/compbiomed/2012...

2greys profile image
2greys in reply to 2greys

I have found some more.

bcu.ac.uk/health-sciences/r...

intechopen.com/books/copd-a...

onlinelibrary.wiley.com/doi...

Spoticus profile image
Spoticus in reply to 2greys

Thanks 2greys x

Sorry to be so blunt but your gp cannot refuse to refer you. Make an immediate strongly worded written complaint to your nhs trust. His refusal is totally unacceptable.

CDPO16 profile image
CDPO16 in reply to Lol1944

I was only referred to a specialist when I failed to respond to several GP prescribed treatments for my COPD. I don't think that this is unusual practice.

Spoticus profile image
Spoticus in reply to CDPO16

I did wonder if that was the case , thanks .

CDPO16 profile image
CDPO16 in reply to Spoticus

The good thing is that you are doing well with Anora irrespective of whether there is a family link or not.

Spoticus profile image
Spoticus in reply to CDPO16

Yes the Anora is working well , long May it continue.

hypercat54 profile image
hypercat54 in reply to Lol1944

Sorry that isn't quite correct. You are within your rights to have a second opinion but this doesn't have to be a consultant, it could just be another doctor.

Spoticus profile image
Spoticus in reply to hypercat54

Think that would apply to me then as 2 doctors said the same on the telephone.

Hi they generally don't check for the genetic link unless you develop copd at a young age ie under 40 ish. This is because it usually shows around that age even in someone who has never smoked. I could be wrong but as far as I'm aware the only risk in having this link is that it usually progresses faster and becomes more severe. I have not heard of any different treatment available though.

I was diagnosed mild around 12 years ago and I am probably moderate now. My doctors told me they don't refer to a consultant unless either they could no longer handle my care, or if I presented any unusual symptoms not typical of copd. I don't.

You are entitled to a second opinion but this can be another doctor. You cannot force them to refer you to a consultant and it's up to you if you want to put pressure on them enough to do that. When I asked my doctors this they just said I would not be seen by the consultant themselves but just by a member of the team and would be 'humiliated'.

My doctors refuse to deal with any routine treatment for my asthma and copd as 'We don't have time and the respiratory nurse knows more than we do anyway'. So unless I have anything out of the ordinary I only see the nurse.

I hope this clarifies it a bit for you.

Littlepom profile image
Littlepom in reply to hypercat54

One sentence to you. change your useless GPs

hypercat54 profile image
hypercat54 in reply to Littlepom

Yes I am trying but so many people have left there that the only one which is busable for me is full and they have closed their lists. The only other ones I would need transport or a cab. :( x

Littlepom profile image
Littlepom in reply to hypercat54

It's just awful that they are failing in their duty of care towards you and inventing'rules' which do not exist which they think that you will swallow and let them off the hook.

hypercat54 profile image
hypercat54 in reply to Littlepom

Yes they are pretty awful. x

CDPO16 profile image
CDPO16 in reply to Littlepom

2 nurses at my GP practice are former respiratory nurses. They review all the COPD and asthma patients and are up to date with all treatments and research. One of my GPs once said that they were more knowledgeable in their field of expertise than she was and she said the practice was lucky to have them. They do however liaise with a GP whenever necessary to ensure the best possible care for their patients.It was on the recommendation of one of these nurses that I was referred to a consultant 6 years ago when various inhalers had failed to control my COPD.

Littlepom profile image
Littlepom in reply to CDPO16

It is true that many respiratory nurses are gaining more experience in copd than many GPs. Unfortunately this is not true for my condition, bronchiectasis. Ours cannot even say it, let alone get a grip on its complexities. Unfortunately most general respiratory consultants know very little about it too. If only GPs wd do what yours did for you and referred you to a consultant for your copd when the nurse realised that they weren't coping.

CDPO16 profile image
CDPO16 in reply to Littlepom

I do realise that I am fortunate to have a decent GP practice and also that there is a great lack of knowledge and understanding for bronchiectasis sufferers. Hope you are doing ok now you are back at home after a traumatic time.

Littlepom profile image
Littlepom in reply to CDPO16

Aw thanks. I am still exhausted and falling asleep at thr drop of a hat and there is a journey to go emotionally and mentally ans then decisions to make but with the support of my friends I am getting there

CDPO16 profile image
CDPO16 in reply to Littlepom

Wishing you well Littlepom xx

Spoticus profile image
Spoticus in reply to Littlepom

Sounds like you have had a rough time of it , take care xx

garshe profile image
garshe in reply to CDPO16

My Respiratory team are fantastic. I trust them more than my GP. They are part of my Consultants team and very knowledgeable. I phone them direct and they always reply .Also come to my house regularly just to check up on me etc. I can phone them for a chat anytime. Just having this support is a bonus and they have saved me many times from hospitalization and having an exacerbation. They will e.mail my GP if I need any medication etc. xxSheila 🙏👍🙌💕

CDPO16 profile image
CDPO16 in reply to garshe

You are fortunate to be under the care of a consultant Sheila, not all of us are. I was discharged in 2018 back to the care of my GP after the consultant eliminated all avenues of possible treatment other than ongoing inhalers.

garshe profile image
garshe in reply to CDPO16

I know. My Respiratory team was taken off normal duties and put on Covid ward last year for a few months. Really missed only an answer phone when I telephoned and never a call back So happy when they resumed to their Respiratory duties as just knowing they are there to speak to. There are five of them , and oxygen nurse Katrina. She arranges appointments every 6 weeks for me to have oxygen checks at the hospital. I was on 16hrs oxygen a day last December as Nathan arranged it when my oxygen dropped to 77

Now I am off it altogether after checks at hospital. March I was borderline after test ,blood taken from vein on wrist. All results immediately 2hour appointment

Went back June and didn't need blood test as my oxygen was 95/96. Katrina was. thrilled . Dont need oxygen now, I swear it was because Nathan came out last December and sorted the problem I had. I thought everyone with Respiratory conditions had this support. xxSheila 🙌🙌💕🙏

CDPO16 profile image
CDPO16 in reply to garshe

You have excellent support Sheila but I think the majority of those with lung disease do not have the same level of specialist care.

garshe profile image
garshe in reply to CDPO16

What a shame as just knowing they are there to chat to makes you feel so much better. Take care. Sending love. xx💕😘

CDPO16 profile image
CDPO16 in reply to garshe

Yes it will. You have done well over recent months Sheila which must be reassuring too. Carole xx

garshe profile image
garshe in reply to CDPO16

I have to admit after watching "The Secret " it changed my way of thinking . I am Positive it has helped with improving my mobility etc. xxSheila 💕🙌

deni-123red_ profile image
deni-123red_ in reply to garshe

What is ‘The Secret’ please? I’ve got an upcoming guided bronchoscopy and need all the help I can get! Thanks

Denise

Maricopa profile image
Maricopa in reply to garshe

Wow! May I ask what caused you to desat so low into the 70’s?

garshe profile image
garshe in reply to Maricopa

The Lockdown, leading to lack of excercise , Terrible Panic attacks ,couldnt breathe. Put on oxygen ,used it to excercise around my house and my garden. All back to normal now thank goodness. Scary at the time but Positive thinking sorted myself out .learned to control the Panic attacks ,dont have them anymore.xx💕💕 Sheila.

Hobbledehoy profile image
Hobbledehoy in reply to garshe

Cor, I thought my medics were good.! Glad for you. What part of the country are you?

garshe profile image
garshe in reply to Hobbledehoy

South Wales, Neath. xxSheila 💕

Spoticus profile image
Spoticus in reply to CDPO16

I’m just hoping my Nurse stays put as she only works on a Wednesday, this Covid has played havoc with my Surgery ..

Spoticus profile image
Spoticus in reply to Littlepom

Wish I could but there is not many taking on New patients here , Swamped with New Builds ..

Spoticus profile image
Spoticus in reply to hypercat54

Thanks, I did wonder as I have seen posts on here that People have been referred really quickly but I am doing well on this inhaler but had also read something a while ago about the Family link & wondered if treatment was different. Luckily the Nurse has been really good x

hypercat54 profile image
hypercat54 in reply to Spoticus

You are welcome. It's those who are more severe or whose symptoms are atypical or who have a different diagnosis than common old copd who tend to get referred, at least in the UK. I guess I am grateful my illness is controlled and I don't need more care. x

I'm in a similar position to you - I started off as mild/moderate about 12 years ago. I've managed through exercise and singing (in a choir) to now test normal. The GPs seem to start from the point of view that it's going to get worse over time and there isn't much they can do, but they will prescribe something to make life 'easier'. I accept that I will get worse over time as that is the nature of the disease, however I'm trying to put that day off for as long as possible. Re the comment about the specialist - have you ever had a conversation with your respiratory nurse about her other patients? I can walk 10 miles with the Ramblers, she informed me that she has patients who can't walk around the surgery, and I think that they are more the sort of people they refer. Early on, I did get told off by a GP for not going to the nurse first when I thought I had an infection.

I hope you have a rescue pack at home so you can take them immediately you think you think you have an infection or an exacerbation? I do which consists of ab's and steriods. If not ask for one.

Copd does get worse over time but my doctor told me that old age would get me first so that's ok.

garshe profile image
garshe in reply to hypercat54

I agree. We all deteriorate as we get older irrelevant whether we have COPD or not. My team explained our lungs start to deteriorate from age 27...don't ask me why 27 lol. 🤪 xxSheila 💕

Spoticus profile image
Spoticus in reply to hypercat54

I haven’t been offered a rescue pack , another thing to ask the Nurse about especially as it took 3 courses of antibiotics and Steroids to stop my Cough in January.

Thanks, I haven't been offered a rescue pack so I'll bring this up the next times I see the nurse. Previously, I didn't have a problem getting to see the nurse/doctor on the same day but since Covid arrived, getting any sort of appointment is a nightmare.

Yes do! I’ve had rescue meds for years. I’ve been on a 3x a week azithromycin regimen along with 5mg of prednisone daily for years. I always have antibiotics at home.

I was working in a physical job until last March when all the Coughing & Sinus problems kicked off , guess I’ve been lucky to be well for so long . Unfortunately I haven’t had as much exercise with The lockdowns & I’m not too keen on getting out there now with all the restrictions easing . Think I’ll have to turn the radio up & sing my head off for a while until I can join a Choir x

Spoticus profile image
Spoticus in reply to hypercat54

Hopefully that doesn’t apply to me then as I was around 54 when diagnosed. I found that the Nurse was better & much more Knowledgeable so I’ll stick with her at the moment .

hypercat54 profile image
hypercat54 in reply to Spoticus

I was the same age.

I see the specialist respiratory nurse too. Though on an annual general review my doctor once voluntarily sent me to respiratory consultant at the hospital, to be sure I was being given correct treatment - which was approved. I've still had pneumonia three times and manage myself with care, together with good GP support. I do think my COPD has progressed - not helped by protracted dratted hayfever/asthma. I am helped by Trimbow twice daily (with Salbutamol reliever when necessary). Pity a quarterly coastal holiday can't be prescribed!Best wishes 💌

My late grandmother, mother, me , my daughters all wheezy asthma sufferers. My granddaughter is chesty , but doesn’t seem to get short of breath. Admittedly my grandmother was never diagnosed as such, but you always knew where she was by the wheezy breathing . My mother remembers seeing her struggling to breathe .

But it could have been exacerbated by the ever present coal fire, and living with smokers .

Allergy sufferers too.

So difficult to know if there is a propensity to lung problems.

Spoticus profile image
Spoticus in reply to knitter

That’s True , I have found this past winter that the wood Burner was not helping although as you say we were all around Coal fires ..

The whole nub of this is those two letters gp general practitioner.

Well certainly if you've never smoked you should be getting the A1 deficiency test ASAP, a simple price of blood is needed i believe. If its positive then at least you could warn your descendants

Spoticus profile image
Spoticus in reply to peege

That’s the problem I did Smoke & as soon as you mention it you’re doomed!! ..

No one in my family suffered from COPD .My father never smoked and although My Mum and all her brothers and sisters smoked also her Mum and Dad , not one had COPD .There is no link of it being Hereditary in my case .Sheila. x

Spoticus profile image
Spoticus in reply to garshe

Most people smoked in the 70s & some still do , they didn’t all get Copd either. Bad luck I guess..

garshe profile image
garshe in reply to Spoticus

Yes I know many in their 70's even 80's and smoked heavily but do not have COPD. I always look on the Positive side and say there are many who are worse off than me COPD is progressive not terminal and others who cannot get out of bed for whatever reason. I look at what I Can do not what I cant, and am Grateful every day of my life xxSheila 🙌👍💕😘

Spoticus profile image
Spoticus in reply to garshe

Best attitude to have I think, count your blessings x

I suppose it must be difficult to see a family link if there r external factors that may have caused it smoking,pollution,workplace irritants etc. to take into consideration too.a bit easier in some cases.my great grandma died of asthma and my dad of if,mainly caused by asbestos.me,my son + his toddler all have asthma and allergies.i have bronchiectasis+ multiple other airway problems.

Spoticus profile image
Spoticus in reply to Patk1

Yes allergies do seem to play a big part . My younger brother was born with Asthma & they did multiple allergy tests on him . No fitted Carpets for Mum everything was wiped down with a damp cloth including the Floor & the rug was beaten outside . Bless him.

I was tested for the genetic gene because I asked for it . Mine was negative ,

I have a family link as well - my father and his brother both had COPD, both of them smoked & my uncle worked in a foundry in the days before health and safety. I was diagnosed about 12 years ago with mild/moderate COPD. I did smoke up until 1988, so after 20 years my diagnosis was a real shock! I have managed to improve my breathing through exercise and singing and now test as normal. My brother says that while he was working he used to be at the bottom end or failed lung tests so there is likely to be an increased tendency towards lung problems in our family. Neither of his children have smoked and don't have any problems. My aim is to stay well enough for long enough that someone hopefully comes up with a treatment.

Yes that’s my plan , might be the only good thing to come out of this pandemic. Better medication x

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