End of end stage copd and ephezrma - British Lung Foun...

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End of end stage copd and ephezrma

Mom has so many medical problems on top of copd. Was told that they can't change any meds due to side effects. She was told she was in the end of end stage copd. I've almost lost her so many times. They retesting thyroid. She had thyroid cancer a few years ago. Just wanting to chat with someone who understands.

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Hi I am so sorry your mum is termed 'end stage'. This must be very difficult for her and you.

The use of the words 'end stage' is gradually being used less because so many copders are living for a long time in this stage and still with quality of life. There are a number on here and I am sure others will come in soon to help. It is a bit late now so you will probably get more replies in the morning. x

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Hi mommat, welcome to our group.

I'm so sorry to hear your Mum is so unwell.

I'm afraid I can't be much help to you about her medical needs but I will chat to you if you need a friend to listen.

Take care 🌺

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My father lived much longer than the doctor said he would with COPD.

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Hi,

Likewise, my dad had multiple issues along with COPD. I know exactly what you mean and exactly what your anxieties are and what you're going through when you say you've nearly lost her so many times, I've gone through that so many times in recent years having taken phone calls from the paramedics who had attended him at the scene at times. It happened so often that the paramedics became familiar with him and knew him by name... It's scary because you're constantly wondering when that dreaded phone call will come, or if you'll even be with them in their final hours or minutes. I spent so long trying to prepare myself mentally for what was to come, but you never can.

Having yet again gone to hospital in an ambulance just hours before, and after many successful battles and close calls, he was just too weak this time. My dad had stage four when he passed away on Monday morning (11/01/2016)

I'm completely in bits right now, which is why I'm on here too. I'm taking real comfort and strength from reading some of the posts from the sufferers, relatives, and friends of this awful disease. Their brave words of support and their upbeat attitude to life is inspiring and so supportive for me right now.

I feel so sad for you and your mum and everyone else who's going through this right now. It's utterly heartbreaking and debilitating.

If I can help support you in any way, or if you want someone to chat to, then please don't hesitate.

Take care,

Paul.

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Hello Paul, I'm so so sorry you're going through this pain. He must have been a lovely man for you to have cared so much.

Thinking of you. Peege

PS can I suggest you put a new post up about your father. There are many in the same position who might benefit from sharing yours and their grief they may not see your reply in this thread. X

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Hi Peege,

Thank you for your lovely message of support It means so much to me at this time.

Yes, I'm reading back on some of things that I've written and without thinking at the time I'm now realising that it may not be appropriate for some people who are seeking other assurances and support. I'm hurting right now and not acting with total calrity at times.

I just want to say to everyone that my dad lived for many many years with COPD and that it's not all doom and gloom.

God bless you all. x

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Oh please don't think I'm criticising for your msg above - far from it. Only that you could do with a bit more support.

Bless you. P

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Hi Peege,

Not at all.. I never thought that for a second that you were. But I don't want to make this thread about me. I feel like I've now hijacked the initial post. I've just become aware of it, and rightly as you suggest, it would maybe help better if it was a post of its own.

x

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Thank you for sharing your heartbreak with me. It means so much to have people who really can understand what its like. I've been the one in the family who takes care of those who are very sick and dying. Although its heartbreaking it has been a blessing to to be able to tend to their needs when others just aren't able to.

I want to be able to do that for mom. I'm afraid that I may not be able too with having my boys. They are my sweethearts but it does make it hard to be with momma.

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Hi,

I know exactly how you feel. It can be very difficult managing other aspects of your life whilst at the same time attending to a sick loved one. You certainly sound as though you've had your share of pain also, which is always so sad to hear.

I've read through lots of posts on here that have helped me so much. And I think that's because having dealt with my dads illness for so long, and even though he's now gone, it's become part of my life, and by speaking to others with the same health issues, it allows me to fill that void that was left after he passed.

I wish you and your mum many happy years ahead. And may God bless you both and your family.

Stay strong!

Paul.

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Thank you so much! :)

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Hello mommat1,,,,,I hope you have peace and calmness during these very trying days,,,, and you have time for some sleep and rest while keeping your care for your mom,,,,,ttfn from Karen.

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Hello Mommat1, such a difficult time for you. For some people in this difficult situation they opt to think of today and not look forward, sadly many of us expect our parents to always be with us. You must look after yourself so you have strength to cope with your very sick mum, change what you can but don't waste energy on what can't be changed. These situations are not easy to cope with and I am sure we all share your feelings and understand what you are going through, especially those who have been through the same. Take care,best wishes will be thinking of you xxx

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I cannot say much to be helpful. I do care and I also know it is hard to walk with a parent who is very ill. I have done my share of that. Please keep talking to us and others who understand your situation. Love is abundant really even though we may not realize it. Hugs!

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Hi mommat my husband died last year of copd he nealy died a few times before that just had to take each day as it came every day was a bonus told each other every day how much we loved each other we never held hands as much as the last few weeks I know how hard it is to be that brave and strong to look into her eyes and try to stay positive for her i found that you can only take one day at a time life changes so much to many things going through your mind at once I do understand what you are feeling take care of your self I'm here if you want to talk.

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I read your post and wanted to send you lots of love - how difficult it must be for you. Take good of yourself and much love to your Mum too xx

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Hi mommat, I can only sympathise it is so hard to watch a loved one suffer. It's wonderful that she has you who cares so much. Thinking of you and sending love to help you through it. Peege xx

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Blessings to you and your family...it's hard I know both my parents are gone on to the next part of the circle of life. It's so very difficult to watch the struggle at the end of life and everyone is unique to their own story. As hard as it is embrace your time and love all you can. I will keep you in my prayers mommat1. Hugs....

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Hi Mommat1, I am so sorry, you must be feeling very low, but you will go on. I too had a mother who had cancer, copd and many other ailments. Mum lived with us for 21 years and we all loved her dearly, but slowly watching her decline was really hard. I was her carer and my belief was we will live each day as if it was her last. We still went on holiday and I must say mum did live for those wonderful family holidays in the sun. At the end I remember asking our GP was this the end and he replied "only God knows that". He was so right mum lived another two years. I do not regret one day, or moment of the time I spent with mum. We talked and laughed about the good times in her life and I got to know the young women, she was before I was born. On the bad days I had a quiet cry and then picked myself up, there would be time to weep when mum was gone. I guess what I am trying to say is keep mum happy as possible and love her. Listen if she wants to talk and if she doesn't hold her hand. Let her know you love her and will always be there for her. It will mean everything to her. Good luck, take care and if you want to talk, well that is what we are here for. Maximonkey

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You guys are amazing. Thank you so much. If anyone needs to talk I'm always here. I pray for your strength and love. God bless you all. Your replies uplifted me so much.

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Please pop your story up on Thyroid Uk on here it is another Health unlocked community forum, (I belong to several community sites on HU.)

I do know that Doctors miss grey areas in both Thyroid and B12 deficency. There is also a Thyroid/COPD link. Your Mum needs to be optimally medicated with her thyroid medication, Doctors could not work out how much Thyroid medication both my Mum and I needed, if we had left it to the Doctors we would both be ill still. This I read about daily on the Thyroid Uk forum site, too many patients being missed or under medicated.

Also with Thyroid or B12 Deficiency you can also be low in range in other such as iron, ferritin (stored iron) folate, vitamin D and B12 too, again because your blood results show 'within range' we get over looked.

Vitamin D3 +K2 and vitamin A have helped my Mum's COPD, her breathing is way better.

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Hi Mommat, I truly feel for you. I lost my mom almost 7 years ago to COPD, although she was never given this diagnosis, so I know how you are feeling. God bless you and your mom xx

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