follow up: following on from my last... - British Lung Foun...

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follow up

shrew
shrew

following on from my last post about my Husband being unwell after hip surgery in January, he was called monday to go to respiratory assesment wed for the morning. he had tests, no copd, no apnea. he had a blood gas at 7.45 (he had been up since 4.30) and too much carbon dioxide in his blood, muscle wastage. He was referred to Neurology through our GP but 18 wk wait for Preston. This Doctor is going to get him in quickly. His sats are still 92. At least they are doing something. He was fine until his anaesthetic in January when they couldnt wake up and he ended up on life support. He wakes with horrific headache each morning. They have given him a machine with a ball inside to use and want to give him another machine once assesed to get rid of carbon dioxide in the night? Its all a worry.

10 Replies
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It is a worry shrew but things are moving quickly for your husband now. I do wish you both well. Xxxx

shrew
shrew
in reply to sassy59

Thank you. It's been a long wait. The GP have done every blood test that they could think of. 3 weeks ago they had a meeting and thought it must be a blood clot in his chest, but blood test negative. He was fine until his operation.

sassy59
sassy59
in reply to shrew

I really do feel for you both and hope your husband improves. This must be so difficult and such a shock. Xxxxxx

I used to wake up with a terrible headache from a build up of carbon dioxide. The hospital gave me a cpac machine to use 6 hours a night. I look and sound like Darth Vada but no headaches. It takes a little bit of getting used to but it has made such a difference. Hope it will be the same for your other half.

Hi shrew, what a worry for you, could this be a reaction to the anesthetic, perhaps you could ask them to look at this. I do hope things improve quickly for you. Irene x

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Hi the fact he has too much carbon dioxide will be giving him his headaches as both times I have had respiratory failure my headaches where so bad beforehand then I was out cold ....the 1st time I was put on niv mask which saved my life as breathed for me ...they thought I may need to go home and use the mask everynight but I didn't need to luckily ...the 2nd time I had been in hospital for a week and my headaches were becoming so bad I couldn't eat, sleep ,talk next thing I'm waking up in intensive care on a ventilator again my carbon dioxide was through the roof at 24 anyway they made me better and am ok once again ....the mask may be just something they are considering as to be honest you really need to be careful with c02 as things can change so very quickly so if he does need a mask just ask them to show you the different ones as some are bigger than others and can put people off but trust me there are smaller ones that still do what is needed ...goodluck to your hubby and to you xx xx Mel 🙂

Thanks everyone . He had 2 pre ops where his sats were 98/99 , they are 92 now. The Doctor thinks he has nerve damage in the shoulder area. He is so tired, struggling to work even 2 days. Hopefully he will get the machine soon and his neurology apt. Thank you for your kind wishes

Hi he got a call today to go into Preston Royal neurology for a week of tests. The doctor did some strength tests and looked over his body and listened to his chest. They did a blood test from his wrist. He's had the weakness in his arms for a couple of years. I am so worried that he has something terrible like Motor neuron

So sorry for you both, it's a worry,but at least the doctor I s doing something.

All the best Shrew.

Hi

Our worst fears were confirmed, it is Motor neurone disease, diagnosed 17/7. GPs had missed the signs. I am devastated. He has took it well. Hoping its a slow and not a rapid progression

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