So I saw the doctor today and he said it’s not an infection, it’s COPD progressing. He said that it’s end stage severe.
His lungs are not functioning correctly and now needs 24 hour oxygen at 4.... what does all this mean?!?
He also has heart failure
Are you under a specialist ?
I'm very sorry to hear that. Is your dad getting any help or advice to manage his condition? You could phone the BLF helpline and ask your questions. I've never phoned them but many people here have, and found help and support or practical advice.
Tell your dad to keep fighting that’s all he can do xx
Sallyhoad
Hi, I've had COPD for many years, it's now severe. There are treatments & trials for this out there but you do have to look & read about it a lot to find theses sites. Be careful what you read on the nett it can give info on severe cases & frighten you rigid.
It will probably take years before you are severe, take as much exercise as you can, walk as much as you are able, take things slowly & do not try to do things at the same speed as before.
The lungs may need the the oxygen regularly but if you stay in a relaxed mode and at "rest" the body needs less oxygen to function which means you may not need as much, make sure however that every time you exert your self take time to recover & during the period of exertion take the oxygen with you.
Can't help with heart details.
Gloomy but you can make it work.
IKeith
Good advice.
So they are sending my dad home on continuous oxygen 24/7
They said there is nothing else they can do and the oxygen will keep him comfortable?
I’m sure your dad will be happier at home. Thinking of you and your dad.
I don’t understand it all.
Are we talking weeks? Months? Years?
I don’t know. Didn’t anyone talk to your dad or to you about things? There are a lot of people who are on oxygen and have been for many years and who go out and about . Being on oxygen isn’t in itself a life limiting thing. Your dad seems to have several issues to take into account. He might need oxygen for a while or for the longer term. There must be someone at the hospital who can answer your questions, you and your dad need explanations and support. I know it can be awkward to ask questions, you don’t want to impose on their time, you don’t want to ask a potentially silly question, you maybe aren’t sure you even want the answers, but you are entitled to ask. Good luck to you both 🤞
He has been on oxygen for over 18 months but not 24/7
I asked at the hospital at they said that the lungs are a main organ and they are not working as they should?
The hospice and palliative care are now involved
You could ask someone at palliative care. It used to be something associated with end of life care, but now it's more like help and support for well-being and enabling a fuller life. Ask them your questions and tell them what you need, what your dad needs, or ask them, what can your dad have to make his life easier. Whether that's emotional support, practical advice, or mobility aids.
How do you know when it’s come to the end?
He has had it 15 years.
He was going for a lung transplant but they found the problem with his heart
When he tries to walk his sats drop to 78-80
I feel like I am on a rollercoaster and waiting for the drop of that makes sense
I guess that's why palliative care is no longer end of life care, just life care. People live longer with complex health conditions therefore need support in their life. I'm sorry your dad wasn't eligible for the lung transplant but at least the problem with his heart was discovered.
It's very hard worrying about and caring for a parent who's ill. It is an emotional rollercoaster. Take care of yourself too.
Thank you very much xx
Hello Sally.
I am sorry you find yourself in this situation. It's very difficult to handle this on your own. Do you have siblings for support and shared responsibility or other family members who you could share this burden with? Unfortunately, I find it falls upon just one or two people that must deal with the nitty gritty of being a carer, and others simply make very "helpful" observations and give " advice ". I am so hoping this is not the case with you. How will be he cared for at home? Will he have a carer? Right now perhaps this is more pressing than how long he has left?
Despite your very high (understandable) emotions please consider this: How much time left is much less important than quality of time left. I don't know enough about your dad's home situation to make any real practical suggestions. But please do try and be calm, which I realise is difficult when your world seems to have started spinning in the opposite direction.
Sending love and hugs,
Cas xx 🙋🐕
So I spoke to my dad. He was told that because he is now on oxygen 24/7 he has reached the end of his journey. I asked him how long and he said no one knows.
I was wondering if this is correct? I think my dad is overwhelmed. He can no longer walk anywhere. My Dad is 63. Anyone know??
I don't know if that is correct. Can you get a second opinion? Being on oxygen 24/7 is not a sign of the end of the road. There are people here on oxygen 24 7. Have you phoned the BLF helpline? They too can give you advice and answers. Don't let one doctor tell your dad it's the end. Best wishes to you both.
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