Out of the frying pan...........

[Steve-329]

Its my first post, although I have been on the site regularly. This Christmas has been quite traumatic having been in hospital for 3 weeks since Xmas Eve. Due to my stage 3/4 COPD (Emphysema) and 4 chest infections since August I had not been outside the house up to Xmas Eve. My exacerbation in August was in Benidorm and resulted in a five day stay in hospital. Since my return home I have been extremely careful and not going out but kept getting recurring infections. At last, on Xmas Eve, I felt well and confident enough to go out for an hour or two.. Unfortunately I had a severe pain in the abdomen which caused me to have a bad exacerbation and was admitted to hospital. Three weeks on and a million tests later they have discovered I have gallstones which caused the COPD to flare up due to the pain. They have also diagnosed me with Motor Neurone Disease, in the throat only which is extremely rare. I now cannot swallow properly and need a tube for feeding through the stomach. Talk about out of the frying pan......... I was also scheduled for Lung Reduction Surgery, by valve insertion on 10th Jan. This is now all cancelled as general anaesthetic is out of the question, and means the gallstones are staying too.

The Motor Neurone Disease has given me a life expectancy of 12 - 18 months. Not a good start to 2017. However I will stay super positive, I am still going on holiday in June. Mind you I have changed my Full Board to Self Catering now I have a PEG !!!

[Katinka46]

What a terrible time you have been having. I am amazed at your attitude. Most would just have bucked under it all.

Glad you have come to join us. It is a brilliant site.

All the best

K

[CDPO16]

Hi,

To say that you have had a traumatic time is putting it very mildly. All credit to you for having such a positive attitude in the face of it all.

I hope that you stay as well as can be and enjoy your holiday when June arrives.

Best wishes

[revagayle]

Your attitude is an inspiration to us all. My thoughts are with you. Have a wonderful vacation! Best wishes.

[Steve-329]

Every cloud has a silver lining I suppose, if they had gone ahead with the lung reduction it may well have killed me as they would not have known about the Motor Neurone. I will always stay positive, its my poor wife I feel sorry for having now become my full time carer and having to give up her work. After retiring 2 years ago after 30 years in the military our plans are now in ruins - but life must go on. There are more tragic cases out there than mine, at lest I have had a good life (so far!). Always stay positive, the negatives just make you more depressed and ill.

[Tee1008 in reply to Steve-329]

I hope your cloud has a platinum lining, Steve. Your attitude is inspiring. I also hope you and your wife have a wonderful holiday in June...and, by the way, welcome and very nice to meet you. x

[PastMeBest]

Hi Steve-329 considering what you are going through, your positive attitude is to be commended.

I wish you better health and hope you enjoy your holiday in June.

John

[Watfordgirl]

Hi Steve and welcome.

I think we're lucky to have you with us. Hang on to the positive attitude!

I hope that now you know everything that's the matter with you that, in a funny sort of way, things may get easier for you and your wife. Easier because you know what you're dealing with and can draw up plans of campaign and strategies. Your 30 years in the military can't go to waste!

I hope we'll see a lot more of you. Take care, Sue x

[jimmy1c]

Hi Steve

Love your attitude and your sense of humour keep well and enjoy your hols

Jimmy1c

[clematis5932]

Welcome Steve. What a truly positive attitude. You put a lot of us me included to shame. Enjoy your time with your wife, enjoy your holiday. and I really hope that the time you have left is a lot, lot longer than they have said.

[Carnival567]

What a brilliant attitude! Do hope you enjoy your June holiday. All the best.

[Steve-329]

My health has now taken another dramatic turn. Whilst in hospital in January, and as part of the testing for Motor Neurone Disease, I had to have a lumbar puncture. As it was a teaching hospital the procedure was performed by a junior doctor (without supervision). After two attempts he failed to get any fluid and I had the most severe pain down my legs, probably the worst pain I ever had in my life. A senior doctor did the third attempt with no problem.

Since being discharged home my back has been a little fragile but a couple of paracetamol usually negates the pain. I was told this was normal for a few weeks after the procedure but my back has got progressively worse and requiring more and more painkillers. Last night after taking 6 paracetamol over the day, then 2 ibuprofen and finally oramorph the severe pain in my back would not subside. At 3.00am this morning I had the First Response medic to the house and then he called the doctor in. The Dr gave me more painkillers and morphine and this did the trick until 8am when it was back with a vengeance. Has anyone else had problems after a lumber puncture?

This really is the most severe back pain (9 out of 10 stuff) and having COPD I cannot (or dare not) cough. I really don't fancy taking painkillers longtime. Good news is that I see my Neurologist on Monday and will be raisin the issue with him as I have never had back issues previously and can only assume the lumbar puncture is to blame.

By the way I have also cancelled my holiday to Spain in June, too many hurdles now. Still trying to keep upbeat but the constant pain is really starting to get me depressed and affecting everything I do.