I haven't been on here for a long time, but I wanted to thank all those that gave me advice and help on questions I had regarding both emphysema and pulmonary fibrosis.
My beautiful mum was diagnosed with both in May 2016 and was on ambulatory oxygen at 3lpm from about July. Whilst she was absolutely fine mentally, she did struggle with the breathlessness. After having a few appointments cancelled and rescheduled for a few months later, she unfortunately didn't get the chance to have her medication adjusted or follow up x-rays/scans to reflect the worsening of her condition until it was too late.
She was admitted to hospital in November of last year with severe breathlessness and fluid retention and was diagnosed with pulmonary edema which was the cause of her worsening breathlessness. She was placed on new medication and all appeared to be working just fine and she was managing to walk really well on 0.5lpm of oxygen, however, it wasn't doing her kidneys any good. She was transferred into intensive care on the 19th January to be placed on dialysis as the fluid was building up again and whilst she was still fine in herself, she sadly passed away on the 21st January after contracting sepsis.
I am totally devastated, however, I know how much she found her lung conditions debilitating and I often wonder if she hadn't had all her respiratory appointments cancelled if things would have been different ..... this I guess I'll never know.
I wish you all well and want to thank you all for your support. We raised a few hundred pounds at her funeral which has been donated between 4 charities, so hopefully this will help with research into these horrible conditions.
Love to all
Julie x
Written by
JForbes26
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So sorry to hear about your dear mum. Don't torture yourself wondering what might have been. Remember her with love and treasure all your beautiful memories. X kath
How sad for and your family. Thank you for coming on here and telling us. Everyone here will be very kind and supportive. And I hope you are getting enough help from family and friends.
So very sorry to hear your sad news Julie, I am sure the money that was raised will be greatly appreciated by th charities. Your mum will always be with ,you will carry her in your heart,and you have all those wonderful memories. Please take care, and please don't stop posting. Love Bernadette 😊 xxx
The same as my mum, she had kidney failure leading to sepsis. It's so sad to lose your mum as they are irreplaceable, so take some time to grieve and just think, she's at peace now.
I am so very sorry to hear of the loss of your precious Mum. I hope you can take some comfort in that she is now at peace. May you find strength during this very difficult time. You must have some wonderful memories of the many times you spent together. Precious memories.
I'm so sorry to hear about your mum, Julie. I remember your posts about her and thinking how lucky she was to have such a supportive daughter. You must miss her a lot, and part of that will be going over things and wondering if they could have been different.
Try to remember the happy times you shared, and the fun you've had together. Thinking of you, Sue
My beloved Mother lost her battle with COPD just over two weeks ago so I know exactly what you're going through. I started a thread recently (if you scroll down the forum threads you'll see it) where I've asked for other people's experiences. I've read back over all your posts regarding your lovely mum and I'm really sad for you. It sounds as though you really tried very very hard to get the right care for her to no avail.
Me and my family are in a very similar position to you, and that's why I felt compelled to reach out and tell you you're not alone in feeling like something more could have been done. You clearly fought very hard on behalf of your Mum, as we did. Your instincts were probably right, but it's hard to challenge the medics. You will naturally wonder whether your mum could've benefitted had her appointments not been cancelled.
Please find a little comfort in knowing there are other people grieving with you. I'll certainly be thinking of you, and empathising with you over how much we both did for our brave mothers. Sending lots of strength and love at this incredibly difficult time...xx
So sorry for your loss Julie. Such a shame that she had appointments cancelled (its becoming more and more prevalent these days). However, I agree with the advice of others above, try to remember the good times with your mum and all the love you shared. All best wishes.
Sorry to hear of your sad loss Julie, and there will always be what ifs take solace in the fact that your mum is free of suffering now and use the good memories to keep your spirits up. My thoughts are with you and I am sure your mum will be watching over you in the future no matter where you are xxx
My heartfelt sympathy to you, Julie, and your family. Treasure the beautiful memories of your mother, before this horrid illness overtook her. Albert .
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My beautiful mum ♥♡
Hello - my 'Mum' has Idiopathic pulmonary fibrosis
Oxygen therapy 
My mum has copd and feel she gets no help from her doctor.
