Thankyou Jenni, Jean and Gill for your replies; your support is much appreciated.

I'm not in a good place right now, I am constantly exhausted and the breathlessness has returned with a vengeance. I'm just about getting up out of bed but then lying on the couch all day til next bed time. I am spending some of the time on the phone to my GP and different consultants' secretaries, trying to get answers to some of my questions and concerns.

I think the surgeon I have is quite highly regarded, I did research him before I had the initial op done and the hospital I attend is a big teaching hospital. He is asking the opinion of another equally highly regarded knee surgeon, just in his words "to make sure nothing is being overlooked". As other people's experience would seem to show, these bugs can be very hard to identify and that is the problem.

I think where I feel a bit frustrated is that the orthos do not understand how the RA drugs could have complicated and clouded the issue (although I have attempted to explain it) and I have been asking them to converse with each other (rheumatology and orthopaedics) all along. This has not happened. Even now, there has been no communication as far as I am aware. The RA is obviously getting out of control now with no drugs but I'm not sure the orthos comprehend that if the RA gets too bad, I will not be fit for the major surgery needed to sort this problem. Further, I have other joint replacements which I am concerned about, in case the infection spreads, which I believe is a possibilty, but again the knee consultant does not appear to be including the other consultants in the care/ treatment plan. Apparently the joint and bone infection team who have discussed/are discussing my case is made up of lower limb surgeons only, The upper limb surgeons have their own team. So the consultants responsible for looking after my shoulder and elbow replacements may not be aware of my situation. I have always found it frustrating that each consultant seems to look at any situation solely with regard to their particular 'bit' and do not look at the whole picture when I am a whole person, not a compendium of different parts. I am sure others of you have found this? I am trying to co-ordinate the information myself, but as you know its is difficult to get access. Jenni, a multi discipline team meeting would be ideal, have you had success in getting one and if so, any tips? Where you allowed in on the meeting yourself?

I understand the possible benefit of the procedure I'm having on the 1st Dec but there are also risks with that surgery and I don't feel as if these have been fully explained to me. (I have written to the surgeon and am awaiting reply). However, the thought of having an untreated infection going on inside me is not pleasant and I just want to get rid of it as quickly but as conservatively as possible so I just hope and pray that this surgery provides the answer of what bug it is. I'm seeing my rheumy on Friday and the anaethesist who will be looking after me on the 1st Dec has asked to see on the same day too, so hopefully I may get some reassurance then at least about how the RA might be managed in the meantime etc. I will ask my rheumy about the possibilty of a multi discipline meeting, although when I've asked if they can speak to the ortho, the reply is usually that this particular consultant is very hard to get hold of.

Sorry I've waffled on, I am finding getting my thoughts out is therapeutic. Hope I've not bored you all to sleep.

Gill, how long after your replacement op was your infection discovered? I am told this makes a difference as to whether the replacement has to be removed or not.

Thanks again for all your support and for 'listening'.

Diane x

Thanks Doreen, it really does help knowing other people can appreciate how I feel. I was starting to wonder if I'm expecting too much but it seems perfectly reasonable to me to think they might discuss the situation & work together.
Diane x

Good morning

I'm also spending a lot of time in bed as totally out of control ra doesn't allow for much else!

I'm going for a couple of hours out this morning and in the power chair managed to gout to the gp for blood test yesterday so that helped lift my spirits when I smiled at the doggie walkers and said morning!

My pa's are great and settle bernice here with me and take her about for me at other times. This downstairs bedroom is being a total god send

Anyway
Mdt

Definately ask the consultant who arranged the last mdt he was involved in
Get hold of them

My hospital is huge and crap for rheumatology dept as there aren't enough rheummies
So

Gp can request an mdt
Also I have spoken to matrons and tried that route

The latest is through the pain team sister
She's my new friend!
She's going to personally visit all the consultants and set it up

They do mdt meetings all the time
They SHOULD do them for you (and me)

I asked to be present for at least some of it as want them to all speak together and look at my global presentation as a whole patient.

I shall pray for Friday lovely lady xx jenni xx

This is a really awful situation for you Diane, I really do hope that you have some luck on Friday with the rheumy and anaethesist.

You really need this infection identifying as quickly as possible, so if the op on Dec 1st is a way forward go for it. It doesn't sound like they can decide what the bug is until they have more to go on. I hope you have some luck in getting a multi disciipline meeting set up.

Infections and R.A are a nightmare, Steroids would help the R.A but I don't think rheumys like to give steroids when you have an infection, I hope you get some guidance and support on Friday.

Thinking of you
Love Rebecca

Hi again,
thanks Rebecca and Liz for taking the time yet again to reply and thankyou for your thoughts, I do appreciate them

just to update (sorry to be boring but I really am finding that keeping a note of this is helping me to clarify my thoughts)

saw an anaethesist yesterday, she was very nice. Not the man who'll be looking after me next week though, apparently he's an ITU consultant and very nice. Basically yesterday was to discuss whether I'll have GA or spinal block next week and also when I have the major surgery. They know from my previous experiences that I prefer spinals and recover more quickly from them, but she explained a spinal wont be enough for the big op as it wont last long enough so she checked my neck and jaw and I had neck x rays. The anaethesist will speak to me next week before my op as to what he feels will be best for me in respect of that procedure. Also briefly discussed post op pain relief and I requested, as I always do, that they do not give me any morphine as it just makes me vomit. She seemed to listen and agree its pointless to in that case, so hopefully they wont. Certainly not for the op next week as it shouldn't be necessary.

Rheumy appt went as well as it could really. The seriousness of my joint replacement and bone infection was reiterated. The whole team looked almost devestated. My consultant couldn't answer most of my questions and concerns because as he (and previously the ortho) explained, they don't know the answers; my situation is not run of the mill, and I am presenting a 'complex and confusing case'. (I always have been awkward). But I am assured that the people who are trying to sort this problem out are all experts in their field. I will continue to be given depos as and when I need them to try and keep the RA from being too horrendous. Will have one just before Christmas if I can hold out til then. I feel a bit better, as it was apparent that they haven't forgotten about me and my consultant is doing things and conversing with certain people behind the scenes. He didnt think a multi discipline team meeting would be of any benefit at the moment though, but perhaps when and if they identify the bug causing the infection...can see his point. I just hope the bone samples they get on Thursday do grow the offending bug.

I am not in too much pain. I think over the years I have learned to cope well with pain. It is the absolute utter exhaustion that I can't cope with and have never got used to. I seem to be worse than ever at the moment though, I suppose that's the combined effect of the RA and infection. Typing this has taken me ages and aaaggggeeessss, its ridiculous. Olivia is taking part in a student exchange programme as part of her A level so we have a Spanish girl coming to stay next Friday for a week. Hopefully, I'll just be in hospital overnight and so I'll be here at home to welcome her, though I'm not sure I'll be able to do much else and I'm feeling guilty and a bit sad about that. Luckily, Olivia and her friends have quite a few things planned so I'm sure they'll keep busy.

Anyway, thanks again all you lovely people for your well wishes and support.

Take care,
Diane x

Hi Diane

My thoughts and prayers are with you for next week. I will be praying for you at Mass today and lighting a candle for you.

Love Sheila x

Thankyou Lyn, Sheila and Rebecca for your kind thoughts.

Lyn, sorry I havent kept in touch either. Hope things are reasonably ok with you at the moment? You must have been so busy with all your fundraising on top of everything else. You should be very proud of yourself, you have done so well and your efforts will benefit all of us. You're a star! Thankyou!

Sheila, thankyou so much for lighting a candle, that really means a lot to me and its so nice of you to think of me.

Rebecca, good luck for your cat scan. I'll be thinking of you and returning the positive thoughts. Let us know how you get on.

Diane x

Thanks Liz, you are so kind. Hope you are reasonably ok at the moment. Any news on your surgery yet?
I'm fine. Got home just after 8pm last night. Op was a doddle, (compared to joint replacement) I wasn't in any real pain at all yesterday (that IV paracetamol is good) and just a bit of discomfort so far this morning. Walking on it better than I have been for weeks...think a lot of fluid was taken off..so not sure how long that will last. Consultant said he got lots of tissue and bone biopsys (bone was very soft) so hopefully at least some of the samples will grow something. On my phone now so will perhaps write more later.
I better start practising my Spanish...limited to not much more than Ola...lol.
Thanks again to everyone who has offered me support on here..it has helped so much.
Rebecca, hope all went well with your scan.
Diane x

Hi Diane,

Oh I am so glad to hear that and also that your knee is feeling easier too - what a difference that makes

Try not to overdo things in the next couple of days at least (easier said than done I know!), you have already been through so much. Ola and smiling takes you a long way anyway:-)

Fingers crossed for the biopsiesxxxxxxxxxxx and hope they dont take too long to grow.

Jenni, I'm so glad you are getting a bit of relief at last too - steroids, what would we do without them. Bit of a love/hate thing.

I'm OK, though have a complication (yes another awkward customer!) from my Rituximab infusions. They cannulated into my elbow vein as it is the only one to oblige these days and I have massive discolouration and swelling with pain in the bones around it nearly 2 months later, been trying to ignore it. So another emergency rheumy clinic appt next week. My poor rheumy, but he is so good.

Have managed to put off a decision on the neck op till after Christmas as we have a big house full starting from the 16th Dec up to 6th Jan (2 sons and family who live and work abroad), Dad-inlaw aged 96 and daughter and hubby. Neurosurgeon agreed to MRI again in Feb, but is concerned about the spinal cord compression worsening.

Supposed to be having my hand reconstructed and fused too and been on w/list since Sept. This involves lots of plates and screws though not as much as the neck, so I am doing the ostrich thing at the moment. Life is complicated enough sometimes!

Take care and hope you can enjoy the weekend.

Love Lizxx

Hi Diane.
I haven't been on here for a while after so I've only just caught up with your post. Glad the op went okay and that you're finding the knee a bit easier.
I'm glad to have seen your post, my knee replacement (2 years old) has really been playing me up lately. Six months ago it was brilliant, now it's causing me a lot of pain. I was naive enough to think that it couldn't be affected because the op was so long ago. Now I realise that the age of the replacement doesn't negate the possibility of infection, so will be off to see my gp shortly. I hope they manage to identify the infection and treat it quickly,

Anthea x