Heartbreaking IPF

My dad broke his hip last August, stopped work and was finally diagnosed with COPD and has gone downhill ever since, with a more recent diagnosis of IPF. He has pretty much been house bound and on Oxygen 24/7. After battling water retention, his legs, arms, back and tummy were fit to burst, a constant cough and breathlessness just from having a drink they finally admitted him to hospital last Monday. He is in the coronary care unit (he has a history of heart attacks/angina), where the nurses are amazing and have tried relentlessly to help him. 13l of fluid have shifted, but they are fighting a losing battle and dad has had enough. The consultants are finally listening to him and have started palliative care, upping his morphine and trying to reduce his Oxygen. He was getting confused from a build up of carbon dioxide. Writing this down is like therapy for me and I thought I didn't have any tears left, but they keep on coming. This is such an awful, cruel, unknown about disease. We wouldn't let an animal suffer like this. We have fought all the way to get dad the care and attention he needs, but what about those that dont have a pushy family behind them, fighting their corner. The Drs and nurses are amazing, but the system is failing them and the patients. David Cameron and the rest have a lot to answer to.

Sorry, deep breath, rant over. I read this forum a lot and can identify with what so many of you are going through. Stay strong and keep on fighting x

12 Replies

  • Picandmix I'm really sorry to hear how your dad is suffering and it sounds like you have his back hr must be very proud of his family thinking of you all best wishes x

  • Dear Picandmix, what an awful time you are all going through. My thoughts and prayers are for you and your family to help you through this. Well done for managing to achieve so much for your Dad.

  • This is very sad for you -I'm so sorry. Hope you're managing to look after yourself too. Keep in touch with us , sending much love xpiggix

  • How sad to read your very moving post, Picandmix, and the struggles you have had to make sure your beloved dad has the best care possible.

    IPF is a horrible condition and not helping the situation, but it does seem to be his heart problems that are giving the biggest cause of concern with regard to his fluid retention and breathlessness, from what you say.

    Being constantly on the edge of survival must be intensely demanding on your dad's remaining strength and devastating for you and your family to have to reconcile to. Don't apologise for any rants, please.

    You have my deepest sympathy and I hope your dad's palliative care makes him more comfortable and peaceful.

    Very best to you all

    Tee xx

  • Thanks for your replies. Trying to sleep, but my mind just won't switch off, replaying every conversation and scenario. Guess it's how Dad feels, as he hasn't slept properly for months. So we thought dad was going to meet with the palliative nurses yesterday, to discuss his options. We kept asking, they promised they were coming, dad got more agitated, scared, annoyed with us, putting on a brave face to the consultants and nurses only to be told they had gone home and would hopefully come tomorrow! We are going around in circles, he hasn't seen the same consultant more than twice in the 10 days that he has been in hospital and even at this sad stage, we are still bloody trying to fight for him even though he has made his wishes clear to us and the nurses. We are all nearly at breaking point, dad especially so and this is not how his ending should be x

  • You are all having a pretty rough time, Picandmix...I am so sorry for you.

    Is your dad strong enough to be moved to a local hospice or similar where he would get more personal nursing and care? Or home? What would he like?

    Look after yourself too.

    Tee xx

  • Hi Picandmix. I'm so sorry your Dad has this awful disease. I lost my Husband to this two years ago so I know what you're going through. If there is anything I can help you with please let me know. I hope the hospital can help to relieve his symptoms a little.

  • Thank you x

  • There is so little known about COPD. We learn more about the disease on these forums, since in the past the medical emphasis has been on Asthma. Your father should never have got to the stage he is in. Someone along the way be it doctors or nurses have ignored his problems.

  • We finally saw the palliative nurse, dad wanted to go home but that isn't an option so he decided on the hospice. But there's no bed, so it looks like he will stay in the coronary care unit. Which to be honest is better than the other option of a normal ward, his coronary nurses are fantastic. Just spoken to the hospital and he is sleeping and more comfortable than he has been in a long time. Thank god. This whole process has made me realize how strong my dad is, I've listened to him speak so bravely about his wishes even though he is absolutely petrified. I love my dad so much and he has been through more than anyone should endure, I just hope that it all ends sooner rather than later, for his sake so he can finally have a rest and find some peace.

  • Dad passed away yesterday afternoon, heartbroken doesn't begin to describe how we are all feeling. Dad is finally through with it all and can rest in peace xx

  • I'm so sorry that you have lost your Dad. He's now at peace and not suffering. It's so hard when you lose someone you love. It does get a little better with time but there are always moments when little things make you think of them. In time you will think of these things with fondness rather than with tears. xx

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