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[Snooker79]

Hi all my first post, my mom has emphysema, with bulla stage 4. She has had it 8 years now, on oxygen permanently 3 litres. In the last 3 wks she has become bed bound, unable to weight bear. Before she was able to walk from bedroom to living room once a day and use the commode when needed. She has lost so much weight bearly eats now, has just developed a bed sore. She has been complaining of a whooshing noise in her head, lost count of how many doctors and nurses that have seen her, even a trip to hospital. No answers!! I’ve also seen a change in mentally , she keeps crying. She has to wear pads now which upsets her pain from her bedroom sore. I’m scared this is the next stage in her condition, and my mom is even more anxious thinking the same. Has anyone experience this please because no one will tell me.

[Hacienda]

Morning Hun, So Sorry to Hear this about your Mum. I am stage 4 Emphysema, have been since Diagnosis in 2013, Before then I had it and was always very poorly, so I would say to date about 8/10 Years. I stopped smoking 4 years ago, have been a lot better since , been on the Transplant List 3 Years. Exercise 3 days a week also Home exercise. I have also been to that Dark Place, which I think your Mum is at now. I have put weight on now at one time I went to 7 stone or less. Your Mum has to be cared for properly and the only person to Advise is her Consultant and You,her Caring Daughter. Please phone the Consultants Secretary and get an Immediate appointment and while waiting, phone your GP, Phone Respiratory , anyone who can help, She must have Professional help. Keep us updated my Dear & Take Care of Yourself. xxx

[Snooker79 in reply to Hacienda]

Hi Hacienda thanks for your support, I have tried to contact her consultant with no luck yet. Will try again this week, I’m her son. Just frustrated with the lack of answers and responses I get from doctors, one turned round and said if you can’t get up and walk you have to go to a nursing home, which really upset her. All they say is your stats are normal for your condition, can’t find anything wrong. Hopefully I’ll get through to her consultant soon get some advice, like I said I think this is the way she is going to be from now, just preying I’m wrong. I’m glad you are staying strong and fighting this dreadful condition x

[Hacienda in reply to Snooker79]

So Sorry, I misjudged your Gender. You are a very caring & Understanding Son. I can't always get my Consultant, but, as soon as I speak to The Secretary , I get a call from my Consultant. The Doctors are not so understanding of Lung Conditions and I have always said this. Respiratory ( phone number on this Forum) do understand, so maybe you should go in this Direction for now, until you get to your Mum's Consultant. if she continues to deteriorate, then Phone for an Ambulance. Good Luck Hun, my very Best wishes to you Both. xxxxx

[2greys]

Hi, I can only comment on one point "She has been complaining of a whooshing noise in her head", I have experienced this for over 30 years, before even being diagnosed, it happens usually when almost asleep. No answers here either, other than perhaps fluid moving in the inner ear although it sounds as if it is in the middle of my head. Other than making me jolt wide awake it has not caused me any problems.

[peege]

If you're in the uk you could try the help line, they are very knowledgable and can give guidance on how to go about getting help for your mum and what to expect from medics.

03000 030555 office hours

[shouty]

Sorry your Mum is going thro this. Do you have help from Community Nurses with the pressure sore or anything else like hygiene. My friend had loads of help daily and she was not as dependent as your Mum sounds at the moment

[casper99]

Hi Snooker. I just wondered if your Mam is on any antidepressant medication? Mental health has a huge effect on physical health.

She is probably feeling rock bottom and as a depression sufferer myself, it can be very hard to get out of that, 'I give up' mode. Antidepressant/Anti anxiety medication is vital.

It's awful, when a parent is sick and help doesn't seem forthcoming. The Doctor, has not helped with the threat of her getting put her in a home.

Find one at the practice,that has some compassion and is willing to get her all the help she needs.

Shouty's advice of getting her assessed for help at home is a good one.

The Social Services office is the place to go. They can help her with washing ect... But, more importantly, ease some of the stress from you.

She should have those prescribed protein drinks and you might be able to tempt her with easy to eat treats like cream buns or whatever you know she usually loves. Any food is better than none, to help kick start her appetite.

I hope you have support from other family members, you have a lot to deal with and are feeling overwhelmed with worry so, you must make sure you take care of your own mental health too.

By the way, what a wonderful son you are xx

[Snooker79 in reply to casper99]

Thank you casper99 for your kind words, your right anxiety and depression plays a huge part with long term illnesses. She was prescribed tablets to help her, but refused saying she takes enough medicine already, also saying they have long term effects and saying their nothing wrong with me. After years of me nagging at her she has started taking oramorph to relax her which is suppose to help with her breathing and anxiety. She has started on the shakes, but it’s been over 3 wks now in bed. I put this post on wondering if this deterioration she is experiencing is normal for my moms illness. Going to try again and get hold of her consultant. Fingers crossed x