Dad been diagonise with copd but now docs saying not sure can anyone help

Hi don't if any of you can help just so confused my dad is 85 an up until about 7 weeks ago apart from alzeihmers was as fit as a fiddle used to go the gym about 5 times a week and always on the go. He had a chest infection last Jan an even when it went all summer he's been saying felt like somet stuck bottom of lungs an coughed most mornings but then went ok just said he was tired but jus put that down to his age took him docs a couple of times in summer sounded chest an said no infection an so thought all ok then about 7 weeks ago had this awful cough so took him docs an they said xray they rang him up 2 days later said wanted see him but no appts for 2 weeks we ended up aving get an emergency appt an doc said we think you might have copd have you smoked or worked in dust we said he gave up smoking 50 yrs ago an only smoked about 10 a week didn't even take them work with him bur he had worked in dust on alot of factory's they made appt r lung function test an gave him steroids an antibiotics he was a bit better but then tablets finished an it came back worse than ever we had gone to wales for a break an he just started coughing and was like he couldn't get his breath an was sweating never seen him like it before even when had chest infection we were going come home from hol but went a bit better and wanted stay as soon as we came back tried get him in doctors by tge time they got him in he was awful bit didbt give him antibiotics or steroids jus inhalers and kept saying lung function test will show more. Then 2 weeks ago went over an mum was just about ring an ambulance he was slumped over couldn't get breathe was sweating an couldn't sit up paramedics came said about his oxygen gave him oxygen an think they drained some off lungs they thought it had caused him have an heart attack got him to a n e who confirmed he was very poorly an if giving the oxygen an antibiotics didn't work would have to look at going into intensive care on a ventilator luckily he perked up and tgey said type 2 resperiritory failure and copd so admitted to resperiritory ward. We had a meeting with consultant who said lung function test cancelled because of chest infection and ct scan would be as an out patient because if having chest infection. The next day I went to visit tgry took him for a ct scan an tge resperiritory nurse came wanted know what scan he'd gone for because wasn't booked in sge even showed me his notes an it said ct scan to be done as out patient 4 to 6 weeks an around the same for lung function test then she said he's goung home tomorrow just got to stop his nebuliser for 24 hours asked if tgey thought he would have to have 1 at home but they said tgey didn't think that bad ct results showed a bit of asbestos an some dust went to pick him up next day an he was discharges with a nebuliser saying to use 4 times daily am nurses would come out to home. Since coming home he's alot better but we are so confused nurse an a resperiritory doc have looked at ct scan said they don't think he had copd and don't think type 2 resperiritory failure said his oxygen levels didn't add up so confused why consultant told us that an it's also on discharge letter now they saying not sure if chest infection either I said well there was something going on an docs an paramedics said we nearly post him good job we just rang ambulance in time. We are so confused everything the consultant said it seems like tgey thinl the or do the opposite nurse came Friday went do his bp an he was covered in a rash we didn't know so we had to get him docs an they ssid think drug allergy but on nothing different since being in hospital he has lung function test 14th December they just keep saying see what that shows but they think he's been over medicated. Can anyone please help we are so confused I know we got to wait got lung function test but things just aren't adding up his rash is no better and got take him back tomorrow feel like everyone saying something different and in the meantime all though dad's loads better than he was he's coughing alot more again and feels like chest infection bit they say not sure don't think he has and my worry is he finished antibiotics day of coming out of hospital even thought consultant said he would have a longer course 2 weeks so he would come home with a week but again they did tge opposite.

Please if anyone can share anything useful we are all so confused

17 Replies

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  • Oh dear, how your poor Dad is suffering and the way that you are being messed about is disgraceful.It must be very distressing for you. I have tried very carefully to follow your post but I am also confused because of the conflicting advice that you have been given and the chopping and changing of treatments. Your Dad needs a proper diagnosis by an expert consultant. What you seem to be getting is a variety of opinions from GPs and various hospital doctors. Given that they do not seem to be able to give a definite diagnosis of COPD or Fibrosis, I am surprised that nobody has mentioned bronchiectasis or ( it seems) , given his age, investigated his heart. I mention bronchiectasis because you say that he told you that he felt as though the bottom of his lungs were full up, he has had repeated infections which only clear up partly with normal, short term, lower dose antibiotics and you mention that they had to drain his lungs. Nobody seems to have come up with a sensible diagnosis following his ct scan.

    I would suggest that you look on the internet for a good chest consultant in your area who also specialises in bronchiectasis.

    Go with your Dad to the GP, tell them that you wish to be referred to this consultant as a matter of urgency and sit there until they give you the letter. Don't be fobbed off.

    You and your Dad have been patient enough whilst various medics have failed to come up with anything and it is no good continuing to react to the episodes which your Dad has, when you know that you will only go around the circle again.

    If it turns out not to be bronchiectasis the specialist will also have expertise in other lung conditions. Your Dad will also be under the care of that consultant's chest clinic and you should get continuity.

    I do hope that this helps. Good luck.

  • Thank you so much for your reply they just keep saying he's got to wait for the lung function test and can't do it because he's had a chest infection even thought tgey say now not sure of he had. Sorry they said in a n e heart ok and they did an eco on ward but every time I asked nobody seemed to know results but somebody ssid it was ok. They did say will see a specialist after lung function test but I thought after a ct scan being in resperiritory ward that if they confirmed copd that was enough I thought the lung function test would show how bad if he has got copd do you know

  • Hi bunker1

    I'm afraid that I can't make a diagnosis any more than you or the GP can because I don't have the expertise or specialised equipment. I'm afraid that spirometry tests alone will not give a diagnosis and you will have waited all of that time.Then it appears that you will be sent to a consultant, not of your own choosing. This is a very hit and miss affair and means a lot more waiting during which your Dad could have another horrible episode. This is why I suggested that you take matters into your own hands, choose the consultant you want to see and insist on a referral. Meantime, don't cancel the spirometry tests because it can take some time to get the appt with the consultant. If you see the consultant before the spirometry tests they will get them done and should be able to access the ct scan. If you see the consultant after the tests they will be able to access the results. I know when you are worried and worn down by it all it is difficult to take matters into your own hands but I am fraid that with the system being as it is, we patients have to chivvy the medics into doing what we want in our best interests instead of waiting for them to get things done in a willy nilly fashion.

  • Thanks so much just got in from hospital went docs this morn and dad still covered in rash she said going send you hospital had bloods and saw several nurses and doctors who were lovely then a dermatologist came and said uticaria and skin cancer on back which he has had before but took him see skin specialist this year showed him and he barely looked and said he's fine I just think it's the luck of the draw if you get a good Dr or not but thanks for reply

  • Hi bunker. I'm pleased that you found someone to help with your Dad's skin problem. I hope that you get some support for his breathing.

  • Hi thanks so much for your advice tried to find a good chest specialist who can diagonise bronchiectasis but in mean time appt came through to see chest specislist after lung function test an bearing in mind the nurses said should be soon after his lung function test which is December the 14th his appt was February I was fuming so I rang number on letter an managed get him an appt but I couldn't go with mum n dad an tge Dr said he doesn't want to confirm diagnosis until.lung function test but said wanted a blood test done but didn't say why mum asked when he would see them he said wouldn't be till January so still non the wiser. I asked the resperiritory nurse about bronchiectasis but she said ct scan didn't show that. Then resperiritory nurse rang yesterday an asked if dad as been doctors to collect his peak flow meter so they haven't got to come out mum said yes but with his alzeihmers he can't remember how to use it so today mum rang nurse as dad could hardly breathe again this morning an said he wanted go back in hospital the nurse came in the afternoon an said they have signed him off so this was the last time mum asked who is going monitor his peak flow then because she doesn't know she said his practice nurse. Mum got upset an said but he can't remember what to do then mum said why does he feel so bad if chest is clear she sounded chest an said it's clear but we think it's his airways that are blocking not his lungs so needs to do the breathing excersize but mum said he can't remember them either mum said what about nebuliser cos he felt better when he was going in that but they said not to use it she said it's his to keep bug only when he's really bad. She also said the blood test the chest Dr did as come back not conclusive so he will have to have another because the Dr isn't sure about his heart mum said well nobody as mentioned that to us I said that's the 1 thing in hospital they said was okey after the eco . Sorry for such a long message do you still think it's worth going private and trying see a chest specialist we are just so confused

    Hope you ok

    Jackie

  • oh dear Jackie. It really is confusing. One minute it seems that there is an appt for respiratory tests in Dec and a follow up in Jan. The next it appears that they have told you that they have signed your Dad off.They give him a nebuliser and tell him not to use it unless he is bad, when it sounds as though he is bad. They say that the ct scan doesn't show bronchiectasis (well the nurse said, not the consultant) Yet they don't seem to have given him a proper diagnosis.They don't appear to have told you what the blood test was for except a vague referrence to his heart. Then they show how insensitive they are by telling your mother that he has to use his peak flow meter (and tell whom the results one may ask) and do exercises when they know that he has alzheimers and they have failed to instruct your Mum in how to help him do this. This sounds a typical case of ' we don't know what it is, we are too lazy to find out properly and just want to get rid of him before it becomes obvious how useless we are'

    Meanwhile your poor Dad is suffering and you have no answers.

    I am disgusted and I am casting around, trying to think of something to suggest as a way forward.

    The only thing I can suggest is that if he feels really ill you go and sit in A&E until they admit him which is a horrible thing to have to do. At least then you would have a chance of seeing a hospital consultant and trying again to get answers and help for your Dad.

    As for a private consultant, it may be worth looking on the internet for a good chest consultant who has a private and NHS practice. Go to see them privately initially and hopefully they will move you to their NHS practice. I am really sorry. It must be so distressing, worrying and exhausting for you and your family.

  • Thanks so much I know you can't wave a magic wand but just helps telling someone who like yourself understands as I think my partner thinks I'm going mad and he's worried that all this is going make me stressed an set off off my stills disease but I just feel so useless ans I'm also worried that my mum is getting so upset an she is disabled and is not very well herself you see they have always managed before because dad as been the fit one just his alzeihmers and mum as arthritis and osteoporosis so can't get round very well but she manages their finances an makes sure dad b goes for appointments an stuff sp they have been a good team an all the hospital seemed interested in is can they dress themselves am cook because tgey still can that's it I just feel like they go on about care in tge community but they let dad out of hospital am said don't worry the resperiritory nurses will becoming out so he might be sent home but it's only because we don't want him catching any bugs so we want to treat him at home which is okey but 3 weeks tomorrow an already they have signed him off sorry feel a rant coming on

    How are you feeling can I ask do you see a chest specialist are you on a nebuliser. Have you been long have you been diagonise

    Thanks jackie

  • Hi Jackie,

    I was diagnosed at 3 years old and I am 65 now. I have lived all over the world and brought up two children. I have had lots of different treatments over the years. Inhalors, oral and nebulised antibiotics, daily physio to empty the gunk from my lungs which I do myself. Currently I am nebulising ceftazidime and some saline because the ceft makes me tight. I have been with the same team at the QE in Bham sonce 1982. It just goes on. I think that you should try not to panic about your Dad because it isn't good for your own health. Just keep plugging away at those docs until you get a proper diagnosis and a routine of treatment and management for your Dad which your Mum can supervise. If the hospital have signed him off you will need to go back to his GP and demand a referral to a decent respiratory consultant because the people whom he has seen so far obviously haven't done their job because they have not diagnosed the cause of his breatlessness. Your Dad should be under the care of a hospital team who provide his ongoing care and tell your GP which drugs to give him.

  • Thanks so much

  • Hi Bunker,it does sound an awful situation,& I do feel for you all,your poor Dad is being put through the mill.It doesn't seem fair,does it?

    You have been given some excellent advice,so all I can do, is wish you all the best,do let us know,how your dad gets on,take care,

    hugs Wen xxx

  • Thanks so much for your reply take care

  • Thanks so much for the reply ended up doctors today then sent us hospital they say now urticaria he's still covered in rash bless and the doctor says skin cancer on his back only about 3 months ago we went see a skin specialist an he's had skin cancer before and mum showed him dad's back an he glanced thst quick you wouldn't believe an he said he's fine I just don't what's going on but thanks for your comments

  • Oh dear,how terrible,these Doctors at times,can be very blasé.

    Do hope things turn around for you all soon,it must be such a worry xxx

  • Thanks for all your help

    Hope you ok

    Jackie

  • How sad, your poor dad. I wish some of these health workers would try to be clear about things. I am always left feeling confused as they all say different things. I hope someone on here can help you, they make a lot more sense than some health workers.

  • Thanks for your reply ww are going for lung function test on Monday so hopefully will know more after hope you ok an getting ready for xmas x

    Thanks jackie

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