Hi everyone. My mum is a stage 4 lung cancer patient. She has been on a great immunitherapy trial and up until now everything has been going well. Unfortunately we recently encountered some complications. She had to have a chest catheter put in to drain fluid from her chest which none of the doctors seemed able to control. This eventually led to an infection which led to severe sepsis. She ended up fighting for her life in intensive care for a week in a coma and on a ventilator.
Anyway, Mum beat the sepsis against all the odds and she has been slowly bought round back to reality. She is actaully doing really well and making progress every day. She's had a traciostomy and they are trying to gradually wean her from the ventilator. She's on track. However, there is just one big problem...
Mum is feeling constantly and torturously breathless. All the machines show her stats are great. Her lungs are filling up with air. Her O2 levels are better than mine. The ventilator doesn't show she's fighting for breath, But no matter what we do we can not shake this awful sensation. Doctors seem unable to suggest anything other than more pain meds and diazapam which make her sleepy. We have tried all the usual things such as controled breathing, changing positions, relaxation techniques. Nothing seems to work and Mum is exhausted and beyond frustrated. The breathlesness sometimes causes terrible panic which of course just makes it worse.
I can't stand watching her struggling like this and I'm desperate to find a way of helping her. It is so difficult. As one doctor put it, when you can't breath nothing else matters. So Mum just spends her days in ICU trying to breath. She can't read, watch TV, or even send a text message. She's in an awful state and I'm out of ideas. Can anyone help?
