And the wait goes on!

And the wait goes on!

Sing this to the tune of And the Beat goes on!

Went to the hospital for pre op assessment for my foot. Very surprised to find the nurse was filling in a brand new form. Asked why the old one couldn't be updated and she told me that when the operation was cancelled in July, I came off the waiting list (!) and didn't go back on it again until I saw the specialist on 10th October. So now they have to complete new forms (what a waste of time and money), go through all the tests again, ECG, bloods, blood pressure, weight and height and MRSI swabs and I will probably be waiting until January at the earliest, all for something which was not my fault and which I did not cancel. A complaint to the Chief Exec of the hospital is in the pipeline. This really is ridiculous. It will be a year in December since GP first referred me!

Had better news last week - saw the chest doctor who confirmed it was the MTX which caused the lung inflammation, my lung function tests were top notch and my oxygen saturation was 97% so he was very pleased. The breathlessness has all gone and lungs are now clear. He doesn't need to see me again. He also reduced the steroids down to 10 mcg a day and from tomorrow down to 5 mcg (1 tablet) and then stop after the week is up. I had been on a reducing dose anyway.

Saw my Rheumy on Friday for the follow up with him. He hadn't yet received the chest doctor's report but was pleased with the last lot of blood tests. He is not putting me on anything else at present (apart from the Enbrel) and will leave it until January to reassess if I need anything else. He did say a lot of his patients are on Enbrel alone and manage the RA quite well. So onwards and upwards.

Must admit I feel a lot better not being on the MTX. I know I will probably get flares once the steroids wear off but will deal with that if and when it happens. Had one flare so far when I couldn't use my left hand and wrist for nearly 3 days - some of my joints are sore but nothing I can't cope with at present. However, have noticed my feet are very painful so that is obviously something to do with it. Did have a pedicure last Friday afternoon - bliss. But feet feel very stiff and sore and uncomfortable to walk on. Hope that will wear off soon.

Anyway, my main worry - the lung inflammation is over and unlikely to re occur as I won't be going back on the MTX. - Ever.

Love LavendarLady x

9 Replies

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  • What good news to hold onto. As for the hospital, that left me speechless(only for a moment!) then angry for you & all who may have suffer similar issues. I hope you do complain if you are up to it. Take care of you. Love Alison xx

  • Hi Lavendar, I'm so glad you got your chest problems more or less sorted, but what a cranky way the hospital is working! One year since referral is beyond belief!! Get that bloomin' letter written. Hope you don't have any flares whilst waiting. xxx

  • I'm interested to share your experience in coming off mtx - this is something I may have to do too, from 20 to 10 after nearly ten years on it. My change is because of odd liver function tests, though they may be stabilizing now.

    I havent had chest problems (so far) but I wish you very well on that. Hope you can get that op rescheduled - I dont think you need any advice on campaigning for that - but much encouragement and positive vibes.

  • Fabulous news on your chest being sorted.!!!!!Hospitals so frustrating for you, truly hope your sorted soon xxx

  • Oh how frustrating about the foot op:-( grrrrr....

    I'm glad to hear that your wheeziness has subsided, hopefully that is the end of that!

    Cece x

  • Our NHS at their best,(NOT). I can't believe how you have been treated,well yes i can,but it is so sad that it is happening in the 21st century isn't i LL. I am glad your chest is doing well off the mtx. You write and tell them how wrong you have been treated.Also threaten to sue and then see what happens. Love your photo LL what plant is it. It is lovely to hear your still with us and are not too bad.xxx

  • Hi LL, I'll echo all of the above. Especially glad to see you here and getting rid of the lung problems. But anger does show up when you describe the seeming nonsense of repeated paperwork. All they should have to do is ask if anything has changed since July.. You would think it would make their life easier too. But all the best with your foot op! Let all around you wait on you, hand and foot..:) Hugs for now, come on over to the Porch Party on Friday at your 3pm.

  • Hi all, the letter has been written and will be posted tomorrow. All 2 pages of it setting out the history of my foot op (or lack of it) and the incompetence involved, the uncaring attitude, the get on with it attitude, and the need for them to look at their practices etc. etc.

    Will let you know if and when I get a reply!

    The chest doctor has also sent me a copy of the letter he has written to my Rheumy consultant setting out all the test results etc and his confirmation it was the MTX which caused the problem. Really nice letter and very reassuring.

    Sylvi, the plant is Frangipani. Very fragrant and beautiful.

    Love LL x

  • Hello LavendarLady,

    Definitely agree about writing a formal complaint about the delay for your foot op and sorry to hear that you're in so much pain. It is incredible given that you were first referred nearly a year ago. There were problems with the first op on my feet in '87 but I was only 9 so my parents made a verbal complaint on my behalf. I think it's important for the hospital to have the feedback to prevent this (such a long delay) happening to anyone else.

    All the best, Fran

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