Caring for mum with severe copd

[Oioisaveloy]

Been following for a while but this is my first post.

Mums a young 76 and had copd for around 15 years, it started deteriorating in 2022 starting with infection after infection and then ending up in hospital for 5 days late July with respiratory failure type 2, with infection they thought, she was put on Bipap for a couple of days and came out well. Then she caught a flu like virus December 22 and ended up back in hospital, low sats and again respiratory failure, very high carbon dioxide level, no intensive care but outreach nurses involved. She was again let out about 5 days later and made a good recovery. She remained reasonably well until last October when her sats kept dropping very low in the 60s before rising back up, when they wouldn’t come back from the 70s we took her to hospital again. They said her lungs were on fire and needed to calm them, no respiratory failure this time but steroid and nebuliser treatments and antibiotics incase, on discharge 3 days later changed her inhaler from trelegy to trimbow and tried her on uniphyllin. For two weeks this worked wonders, she had a much easier time breathing, but then the uniphyllin created unbearable side effects so was stopped. She struggled along to December then caught covid off my dad and ended up in hospital again, her crp was around 500 and she had bacterial pneumonia as a Covid after effect. Again 3 days in hospital and she was home. Since then she has really struggled, extremely breathless doing anything sats drop into 70s but settle around 84-90, hospital say that’s safe for her, I’ve battled with her but she can’t give up smoking completely and still smokes 3 a day (gone from over 20 a couple of years ago so proud of her for that) she can’t have home oxygen because of this. She’s been referred for home bipap and morphine for severe breathlessness. And just had one more night in hospital last monday due to low sats, now on water tablets as they thought it was water on her lung. I’m worried sick about her all the time, wondering if she’ll ever feel any better, can they get her back to how she felt six months ago, is there any light at the end of the tunnel. Sorry to ramble.

[Alberta56]

I'm sorry you are having this trouble. I can't offer any help except to say that lung troubles often take a long time to clear up. I felt at one time that I would never be well again. Perhaps other members will be along soon who can tell you their own stories. Welcome to the forum and best wishes to you and your mother.

[Troilus]

Hi Oioisaveloy.

So sorry your mum is not doing very well at the moment. I’m not an authority on copd, but there are plenty of people on here who are and hopefully it won’t be too long before they answer your questions.

There are a couple of reasons why I posted. One is to do with smoking. My daughter in law tried and failed on more than one occasion to stop. She then bought Recigar? from Amazon and she said this totally removed her need to smoke and that when she did she didn’t enjoy it so stopped altogether. (Of course you would need to check this with your GP if your mum wanted to give it a try.) Just popping back having finished writing - see if your mum would be willing to stop for a few weeks - maybe your GP will be a bit more helpful if he thinks your mum is doing all she can.

The other thing you mentioned was that your mum was getting along nicely with uniphyllin. Did they replace this with anything? I am aware of this drug as an asthma medication so it must be something to do with inflammation or bronchodilator and there are plenty of other medications that would help with that. Also, in October your mum was given oral steroids and responded well. Was she offered any in December? If so how did she respond? Inflammation is often settled with prednisone but sometimes where inflammation is severe, more that the standard course is needed or as in my case more frequent courses. ( I had 4 courses before mine settled and I now take high dose inhaled steroid) There are some people who take low dose prednisone long term.

One thing I have learned is that the older you get the more you have to push for the correct treatment. It is all too easy for medics to say well she is …. and she has had ….. for years. Push your GP. Ask questions. Do your research and make suggestions if none are offered. Ask for steroid treatment, if it is refused ask if they could at least try it. People can deteriorate but if that is the case here at least you will know you did your best to make life better for your mum.

Sorry, I didn’t mean this to be such a long post, but I hope there is something useful in here.

[Oioisaveloy in reply to Troilus]

Hi Troilus, thank you so very much for your suggestions, I will definitely have a look on Amazon re the stop smoking thing.

My mum has had lots of steroids since October, she is currently on a tapering dose, got about 10 more days worth. After the uniphyllin they didn’t offer an alternative, I asked could she perhaps only take one a day and they said that wasn’t a therapeutic dose. I’ve seen some people do well on montekulast but they haven’t offered that. She’s currently on Trimbow, Carbosisteine, two salbutamol nebulisers a day and a rescue inhaler when needed. Now she’s taking furusemide too because after her over night hospital stay last Monday they think there could be water on her lungs because her ankles were swollen, that’s mainly because she’s slept in a chair because the stairs are too much at night to go upstairs to bed, she had an echo cardiogram in November and they said she only had a very very slight enlargement of the right side of her heart, I just would love for her to get back to how she felt a few months back, I’m so anxious every night coming home to my family and each morning have a knot in my stomach worrying if she had a reasonable night. She would just love to feel a little better.

[KC2222]

I agree with Alberta56, My consultant told me it could take 6 months or more to recover from pneumonia, so just take a day at a time,keep your mum away from bugs and virus's where possible, dont overexert and hopefully she will recover to a better state over time.It will be a slow process and this weather does not help any of us, look forward to Spring x

[Malcolm132631]

Mad to still smoke there is very little more to say.

[warwickstag]

There really is a lot that can be done, but she really needs to help herself first. I talk from bitter experience of the battle to quit smoking, and as is often the case, managed to give up when it was too late and the long term damage was already done. I was on 30 per day for decades, and finally stopped with the help of my GP, nicotine patches (for 6 weeks) and a realisation that I was headed for an early grave. Yes it took a tremendous amount of will power, but in my experience you have to want to give up, in order to succeed. Until your mother wants it bad enough then things can only get worse. Having stopped in 2002, I was put on long term oxygen in 2008 at a rate of 2 litres/minute, which has been increased progressively to my current 8 lts/min. Having been identified as a CO2 retainer I was put on Nasal vent (Nippy) by a very helpful consultant at Glenfield hospital, and using this at night improved my vitality considerably and I managed to remain mobile with the help of portable O2 cylinders until 2018, by which time I could no longer carry these so have been housebound since. It does have its' plus side as I contract very few viruses and avoided Covid. During this whole time my sats have peaked around 91 and are normally in the 84-88 range. My life expectancy at 51 was 5-10 years, and I'm still enjoying life at 72.Once your mum stops smoking, there is a lot of help available to improve her health, but only she can decide if her 3 ciggies a day are worth denying herself a prolonged and improved quality of life. I do hope she makes the wise choice.

[Oioisaveloy in reply to warwickstag]

Thank you Warwickstag and the others for your kind advice, I have managed to get hold of the Recigar smoking cessation tablets that Troilus recommended, it turned out that these are the tablets I’ve been trying to get her through the GP and respiratory nurses for a few weeks now after I read about them on the news, they were officially released for NHS use on the 22nd of January, the doctors and nurses knew nothing about them and were going to try and find out, but as they have been licenced in Europe for many years I have managed to buy some and she’s going to give them a go.

Thank you for all the other advice you have given telling me your story, it gives me some real hope. She’s just been feeling so rough and breathless lately its made me so worried, here’s hoping they don’t take too long for the Bipap referral.

Thank you everyone x

[Ern007]

HI, lung problems can take a while to clear up and your mum is 75 - She struggled in "December" - Winter is not good news for COPD sufferers . Covid is another bad factor, both my wife and I caught it, I am in my seventies and no way could I fight it off as soon as my wife (Anne) did.

Lets hope she feels better soon and that spring and summer will help her, sorry can't be more of a help;

[Dovecote6]

Hi l was on a nebuliser for years with antibiotics and it definitely helps the lungs.I used it twice a day every dayHope it helps your mum