Hello - my first visit and post - sorry it's a long one!
My step-dad (SD), 70, has had COPD for a number of years. He has other health issues such as diabetes and arthritis. In Dec 2019 he had what we thought was a bad chest infection - he ended up in hospital in early Jan 2020 but discharged the same day as no sign of infection. He was subsequently referred to the respiratory clinic and for a chest Xray and scan. The results of these confirmed the COPD and there were some minor tweaks to his medication.
Throughout the height of the pandemic he was asked to shield and he remained in fair health and up until Jan 2022 was able to enjoy his garden, walking and going away in the motor home.
However, this year his health has deteriorated and the picture seems to get more confusing with each appointment.
He has had two scans under instruction from the respiratory clinic, the first in April the second in July - they show no deterioration in his lungs despite him now being almost completely breathless and unable to walk to the kitchen or dry himself after a shower. The consultant has postponed his planned appointment from Oct 2022 to Aug 2023 on the basis of the scan.
He had tried to get a face to face GP appointment for months, and was successful when the respiratory consultant suggested the issues may be heart related - he was referred to cardiology.
Three weeks ago we called an ambulance and he was admitted to hospital, we were told he had COVID and blood clots in his lungs. During an 8 day stay we were told he had angina, and then that he had heart failure on the left side. He gained 8kg in fluid in 5 days. He was discharged with insulin for his diabetes, which had went crazy and an appointment for a heart scan (the one with the radioactive dye) and on blood thinners.
Today they said there is no sign of angina, made no mention of the heart failure, and have said they think it must be the lungs.
I'm not sure what advice I'm looking for, but it feels almost impossible to get any kind of clarity on the situation. In the interim, his mobility is decreasing, he is exhausted and is sleeping much more, has bouts of nausea and generally feels awful. We know he is ill, but seem to be stuck in a system and we don't know what questions to ask and who to ask. If anyone has any tips, they would be much appreciated.
Thank you
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ConfusedLK
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With the caveat that I’m not remotely medically qualified.
Firstly, I’m sorry to hear you’re having such an awful time trying to get your step dad properly diagnosed and cared for. Unfortunately, from repeated, first hand experience, joined up, holistic care and decent communication are not generally part and parcel of the NHS. Even pre-covid. Although not quite as friendly as us lung bunch, I also happen to belong to the British Heart Foundation (BHF) here, and would suggest cross-posting there if you haven’t already: from what you’ve said, the issues could be respiratory, or they could well be heart related, or possibly both. Without getting too heavily into the cardiac side here, angina can be difficult to diagnose, generally, but there are variants that many patients spend years struggling to get a diagnosis for. The two in particular I’m thinking of form what’s called NOCAD, or non-obstructive coronary artery disease: it means where there is no arterial plaques or narrowing, but the blood vessels tend to go into spasm, causing angina symptoms. Because there’s no blockage, the usual tests fail to pick it up, but it requires medication and treatment, regardless, to prevent future heart attacks and other cardiovascular events. I’m not suggesting that’s what this is, simply that these situations are quite frequently not as cut and dried as many medics would like to make out. The fact that he’s got fluid retention and an enlarged heart also needs properly explaining, to you and him if nothing else.
From the respiratory side of things, has he had a chest ct, and do you know what exactly his diagnosis is? COPD is an umbrella term that encompasses a number of conditions, for example emphysema and chronic bronchitis, and they all need slightly different treatment approaches. What inhalers is he taking, and if they’re pump style (metered dose inhalers) is he using a spacer when he takes them? Managing COPD can change over time, with inhalers that used to work well no longer doing the trick, but I would hope that if he’s been under respiratory they have at least tried altering the approach. Have they undertaken spirometry testing to see what his lung function is like? I apologise for all the questions, but these are all bits of the puzzle that would potentially help in trying to work out what your best next steps would be.
My other thought is whether or not they’ve explored gastro issues? As you mention nausea, reflux and/or a hiatus hernia sprung to mind. Acid travelling up the oesophagus and into the lungs can cause breathlessness and coughing that won’t respond to inhalers, as well as breathing difficulties more generally. There’s a general misconception that this kind of thing always causes heartburn, but in reality it can be ‘silent’, meaning you have no pain or obvious symptoms at all. I know this because I’ve experienced it myself, including issues with cough/breathing. Does he currently take a proton pump inhibitor like omeprazole or lansoprazole? There are others, but they’re the most common two. Again, even if he is, that wouldn’t necessarily rule out acid being the issue.
Last but not least, and just thinking out loud, is it possible he’s previously had covid and the worsened breathlessness could be long-covid or an associated effect from the virus? We are seeing people post here that have struggled with breathlessness long after having the virus, even if they weren’t hospitalised.
Regardless of the answers to any of the above, if this was me, I would start by making a double appt to speak to the GP, either with your SD, or on his behalf. As long as he gives consent, you can do that. Before that appt occurs, though, and assuming he’s not already got access online, I would also contact the practice and ask for copies of all his respiratory and cardiac test results - not the summaries, the actual outcome reports themselves. You have a legal right to access them. GPs are jacks of all trades, and many here can attest to the fact that they don’t always know what they don’t know. Or won’t admit to it. Sadly, the same is true of some consultants, too - my daughter has a life limiting lung disease, and was given terrible care and left in a dire state by a specialist consultant who quite literally wrote the textbook on paediatric respiratory care. He simply refused to accept he could be wrong about what was going on. It hasn’t been a one off experience for either of us, though, and I’ve also had scans verbally reported back to me as clear where they weren’t: by seeing the radiologist’s report, you’ll at least know exactly what they’ve found on imaging, which may help guide you towards the way forward. There are lung conditions that are quite difficult to diagnose, and some that general respiratory consultants only have as much clue about as GPs, do. It may be that there is a respiratory issue that requires a more specialist service than the one he’s been seen by, but unless you luck out and get a double appt with a very good gp, this is likely to be a situation where you’re going to have to play detective and do some of the leg work. It shouldn’t be like that, but where issues aren’t straight forward or obvious, often it is.
Thanks for taking the time to reply, it’s much appreciated. I think we’ll go back through the timeline and mark up all the changes to medication and decisions. Interestingly reflux was mentioned a couple of years ago and he was told not to eat after dinner, but no medication.
We wondered about Covid, and the paramedics suggested long covid, but the hospital dismissed this pretty quickly. We’ll put this on the list to explore!
You’ve given us some helpful pointers and it’s much appreciated. Best wishes to you and yours.
I hope you get the answers you need, but will just say, as they’ve already mentioned reflux themselves (I am rolling my eyes here at both that and the advice he’s been given, not going to lie), and as nausea is an issue, prescribing him a decent dose of PPI would be a really easy step that might make him feel better generally, and would help rule acid related issues in or out. If acid is a factor, you would expect to fairly quickly see an improvement, and I think it’s worth outright asking the GP, making sure to mention that it’s been suggested by medics previously but nothing has been done: if acid is a major factor in what’s going on, then prescribing a PPI is a cheap and easy fix for the NHS. It’s not cheap over the counter, but if the GP were to refuse, it might be worth bearing in mind you can buy esomeprazole, which is a close relation of omeprazole, from pharmacies, branded as Nexium or Guardium, and Boots also do own brand. However, it can take a few weeks to get full benefit from PPI therapy, so it would somewhat depend on your financial situation as to whether that’s feasible, and it really shouldn’t come to that under the circumstances: the medics need to step up here and stop just saying not our problem and passing him back!
Good luck, and if you feel inclined, let us know how you’re getting on.
Thank you, Charlie _ G your answers to ConfusedLK gave thought for reflection, I've had covid myself in July about 8 weeks ago now, but I am getting extreme tiredness still cough some sneezing, breathing worse. They say it can take 12 weeks to go. When the paramedics came out, they said the symptoms could be around for a while. The details about cough possibly being heart not lungs are very true. So, we all need to think carefully when a symptom can be more than one possible cause. I had tests for acid reflux years ago but since Covid my mouth is always sour and bouts of indigestion. So, I guess we all have to be vigilant both for ourselves, family and partners
I am so sorry he is going through this. The part where you said he filled up with fluid reminded me of my mum. Her body filled with so much fluid within 3 days. We took her, by ambulance to hospital. It was diagnosed as congestive heart failure.
I had a similar experience which might be relevant.
I had sudden onset loss of breath - couldn’t seem to get air in or out - horrible.
Ambulance came ecg, nebulised. Off to hospital, more nebulisers, chest X-ray. Discharged with a blue inhaler and a course of prednisone.
Shortly after I got got home I got a call asking me to go back for another ecg as they had spotted some irregularities.
Upon return a heart consultant came to see me and explained that I had the ecg of a person who had had a heart attack, but that my triponium? levels indicated I hadn’t.
He explained that heart problems can cause breathlessness and that I may have angina. Either way he didn’t feel it was safe for me to go home because of the irregularities in the ecg and “suggested” I be admitted for tests.
I was put on 24 hour heart monitoring. The next morning I had a heart scan (the ultrasound type to check for heart failure ) which was fine. When I asked about going home the consultant told me it would depend on the results of the angiogram. If I needed stents I could possibly go home the next day. If I needed a triple bypass, which he thought likely, then it could be three weeks.
The next day I had the angiogram and everything was fine. I was discharged straight after with Asprin as a cautionary measure, but I was referrred to the respiratory clinic. The heart consultant said that my struggling for breath must have put a tremendous strain on the heart.
Maybe the thinking was the same with your step dad.
What to do next?
Has he still got a named respiratory consultant?
If he has, there are two ways forward.
The quickest is to ring the respiratory clinic. Explain the situation. They will either offer a telephone appointment or triage immediately (on the phone) and offer a face to face.
The other alternative would be to ring the respiratory consultants secretary and ask for an appointment, again explaining you are concerned about the deterioration in your step dad’s condition.
If he is no longer under the care of a respiratory consultant try ringing cardiology secretaries and ask if the cardiologist would do referral to the respiratory department.
Of course there is always your GP - ask for a home visit.
111 also is a good place as they can open up GP appointments or can arrange for your step dad to be seen in ambulatory care or A&E.
I’m sorry I can’t be of much more help to you. It is terrible to watch someone going downhill but not being sure what, if anything, you can do, yet at the same time knowing you need to do something.
Getting him to the respiratory clinic at your local hospital would be a good place to start. They could do pulmonary function tests to get a better understanding of what is going on and treat him accordingly or even alter his medications without further tests.
As cardiology have already indicated that they think the problem is respiratory maybe they have already passed your dad’s case back, but a phone call from you will help to stress the urgency.
Give them a ring and if you are offered a face to face ask if they ever get cancellations. I have got speedy appointments in the past by being able to take a cancellation at short notice.
Thank you so much for taking the time to reply. You’ve given me some really helpful pointers. He is still under the respiratory team, but they moved his Oct appointment to next July based on the last scans. We’ll get in touch with the consultant as you suggest as we’re not sure if cardiology are writing. It’s such a minefield and so helpful to have some guidance. Best wishes to you and yours
You have had excellent replies from other members. Not much I can add but I did think fluid retention when you mentioned weight gain. I think you will now have some apposite questions for the doctors.
i hope the very authoritative answers from Charlie and Troilus will help you. I would suggest going through Charlie's answer with a notebook to hand and writing down all the various points raised- cardio, respiratory and gastro+ anything else, so that you are well armed in talking to the professionals. 70 is too young for them to be giving up on him. xxx
I hope so. It's so awful when you're alone with a seemingly intractable problem and don't know where to turn. One of our other well loved members reminds us that you have to be persistent to the point of bloody mindedness if the medics keep trying to palm you off.
So sorry to hear all the difficulties you and your Step-Dad are going through.
The description sounds very similar to what happened to my previous husband Bob who died in 2003 (so long before covid). I found certain foods were exacerbating his conditions, so did a diary covering food, symptom and activities. A holiday in Rhodes in 1989 helped me track down the problems to bleached white flour and products, and cows milk and products. I studied dietetics to understand what was going on, as at that time two camps of opinion were polarised into doctors saying it's nonsense about developing food intolerances and fanatics who rubbished the doctors and said everyone's got food intolerances.
I found that though cows milk and bleached wheat flour didn't cause the multiple problems Bob had, (end stage COPD, angina, peripheral vascular disease), when he consumed them they added ascites (swelling around the heart and liver because the hepatic portal vein between the gut and the liver had 'shut down' for a while) and extreme breathlessness. These intolerances did not start until he was in his early 60s.
Your SD's case may well not be the same. But lung and heart conditions can be complicated things to diagnose and treat effectively. Just praying that you will be able to find the end of the string that leads to the solution to an improved outlook for your SD.
I am sorry to hear of your problems and frustrations. Again I must stress that I am not medically qualified but your message rang several bells with me. My dad had diagnosed angina for many years with no treatment apart from beta blockers. However, there came a point where he felt something was going wrong and he became just slower and slower and more and more breathless. The GP more or less dismissed him saying that as well as Angina he had developed very mild COPD, he may at that point have had a scan to confirm this I am not sure. The deterioration continued until in 2014 when I was out of the country on holiday I had a text from my mum saying he had collapsed on the driveway while washing the car. Long story short he then had a battery of scans many of which didn't seem to show much but one, and I think it may have been an MRI, showed overwhelming damage to his heart. He was told that he must have suffered more than one heart attack and essentially half of his heart was dead. They were astounded that he had been managing more or less as normal but of course it was his very slow steady normal. In addition he also had COPD but that was classed as mild. My dad then actually paid for more detailed scans and advice at a leading hospital as he could not get these on the NHS. All that money saved for a rainy day finally came in handy! Anyway despite trying to get him on a number of trials the fact that he was suffering from both heart failure and COPD meant no one would accept him. He was angry and bitter at how he felt the NHS had let him down. Earlier investigation would have perhaps prevented the heart attacks and given him a few more years. This sounds a depressing story and I am just telling it to say it helps sometimes to insist on a second opinion, which you are quite entitled to . If you are then still hitting a brick wall and if you have the means perhaps think about a private consultation at a hospital known for it's expertise in respiratory and cardiac issues. Of course my dad was ill before covid existed so if your SD has had that then that could be muddying the water. I hope you get somewhere and at least get to a point where your SD feels he has been given a reason for his deterioration that makes sense.
Thanks for taking the time to reply and share your family’s story; I’m sorry to read about your Dad’s experience. We’d spoken about looking at private options and will certainly explore further. We’ve had such helpful and generous advice here, and are really grateful. Best wishes to you and yours.
Hi ConfusedLK and welcome to the site. I cant add anything to the really good advise you have been given but wanted to wish you and your SD well and hope that you get some firm diagnosis. Its an uphill struggle nowadays but persevere and dont take no for an answer x
Good day to you if you live in england have you tryed Citizens advise bureau try the birmingham office they will sort it from there they have medical people they can advise good luck
Hi and welcome 🤗 . I hope you’re feeling better since being given some good advice , I can’t add anything of any importance but i I hope it helps to know you have plenty of support here . My husband has suffered from Copd ( emphysema) for many years which is now causing issues with his heart due to the added strain but as your stepfather was reasonably well and the deterioration was quite sudden and the respiratory scans showed no damage to the lungs I would assume the main problem is the heart . Good luck going forward, I hope you get some clarity soon 😊
Thanks for your reply. It seems very odd that he had an ultrasound when in hospital and the cardiologist suggested heart failure, then this had never been mentioned again. We were shocked when his outpatient cardiology appointment resulted in ‘no problems with the heart’! We’ve had such helpful advice here and feel a bit more focussed. Best wishes to you and yours
So sorry to hear what you all have been through .Might there be an element of Post Covid Syndrome as well at the moment for him. I have Long Covid and the constant fatigue, nausea sleeping more etc are symptoms. I really hope you can get some clarity soon.
So sorry your SD is having such a hard time. I can't add anything experience wise except to echo the advice of a second opinion. It's always good to have fresh eyes look over the conditions.
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