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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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i sAW The big chief and he explained that the options are:
1) we do not treat
2) chemotherapy (and he explained he would rather poke pins in his eyes than put me through this)
3) further drug i-mabs / tnfs. I am allergic to the proteins used. There *might* be one that Im less allergic to- but I cannot keep slugging away at this.
4) There is a new drug in America, not here but in America called Jak inhibitors, that are tablets and dont have the protein.
He is going to try for 4.
In the meantime had a very upsetting time talking through the total lack of systemic support when things do go wrong/ cant get any support from rheumatology. I was honest about how the SHO talked to me before and we discussed it all and he agreed things were poor but cannot see how they could be improved in reality. There arent enough rheumatologists to see patients in southampton.
upsetting further when we went through the long corridors to reception and they said "its to see the nurse" and there is no point at all.
so I went straight back to his door. nurse said Oh yes you dont see dr you see the nurses...
dr came out and asked for me to book on aday with the nurse that he is physically there for as its the only way to get me a *&^%$ing appointment!!!
the worse is just to come.
elderly couple, been seen by the nurse struggle down the endless corridor and arrive - the lady in agony and tearful and my mum left me and got her a wheelchair from the front. She was in hideous pain. Her elderly husband just couldnt help her enough himself and was clearly trying but it was distressing. Mum said "come on lovely, you CAN do it I've got you take your time ever so gently".
NO ONE came to help NO ONE
Im afraid I am so upset about this, I cried all the way to the car... The receptionist said "they are all running clinic"
They were all stood round 3 corridors down and dismissed this couple with bloody miles to walk
I hate hospitals
Jennihow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Dear Jennie,
Can't imagine how frustrating, disappointing and annoying this is for you and the Family.
When you say Big Chief do you mean your Rheumatologist or the CEO.? Why couldn't the .......receptionist get a porter.
I thought (!!!!!) that was their job. I can feel another missive ( or missile) from you, why not copy it to Andrew Lansley?
Hope all this anger doesn't internalise for you. Never mind the velvet for the bulldozer it needs barbed wire unless it is only used to protect yourself.
Take care Anne
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jenni
Fantastic news about the new drug, they are moving leaps and bounds in USA, thank goodness ! Sounds like he will really look after you, just what is needed.
That was really terrible, the way the elderly couple were treated, in a hospital too. I think many of them get far too blase, one day they might be in the same position and need help !
I hope you have a restful evening,
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, I hope no.4 works out for you, USA seem way ahead of us in treatment terms. I cannot believe how those people who work for the "caring profession" could leave that poor elderly couple to suffer like that!! It makes me so angry, and yes, one day they may be in that position too. God bless you Jenni, and will be thinking of you x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jenni
So pleased that you got to have a good chat the 'the boss'. Option 4 sounds good I pray
for you that you will be given this to try to try and improve your quality. Poor Jenni
It sounds like the Hospital could do with a good re structure as it obviously has too many nurses hanging around
and receptionists who cannot even help patients who desperatly need it. Terrible
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Jenni
Pleased that you managed to talk everything through and will pray that option 4 is made available to you.
Sorry you had to witness such apalling treatment of an elderly couple, some things are inexcusable!
Best Wishes
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Jenni.
It's good that they are trying to get No 4 for you but what an absolutely **** time you are having. I have witnessed similar things in hospital and it is just not good enough. You wouldn't have got that in 'matron's' day. I will keep on praying for you.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Oh lovely Jenni - there are just no words, are there? Hugsxxxxxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Jenni
Been thinking of you and wondered how it went. Lets hope that option four works. I don't know if you know but on facebook there is an American Group, it's called RA Chicks, if you put it in the search box you will find it. Just wondered if you asked on there about the drug someone may be on it.
The hospital sounds awful just wish you could come to mine. You walk in main reception, turn left and the clinic is the first one you come to. I think I get very good care. I'm not so good at the moment (can remember me posting about my CRP being over 50), well its still high and I rung and left a message about having a steroid injection. Within two days of my phone call I had my steroid injection booked, was asked what day and what time I would like to have it the choice was mine, the nurse even said said that if I wanted to see my consultant she would get me an appointment within the next few weeks.
It's just not right that by chance I get such goo care and you get such terrible, terrible care. I don't think that what you was told....there are not enough rheumatologists to see all patients, is a good enough excuse. With your history of RA you should be seen as a priority and not just another patient on a list.
Just hope and pray for you that this new treatment will work. You certainly need and deserve some good news.
Love Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
what an upsetting time you had at the Hospital .. no one wants to see a patient in distress.
really hope that option 4 is the way forward for you,
Suzanne x
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Rank: Member
Groups: Registered
Joined: 9/29/2010
Posts: 27
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Hi Jenni
That sounds just awful. Could you get a transfer to Winchester? They may not be perfect but sounds a 100 times better than Southampton. They would never leave anybody struggling like that.
My RA is no where near as bad as yours but they always want to help to try to improve your quality of live. They also have a great OT who completely understood me wanting to carry on horse riding and set about make splints to limit the damage I do to my joints by carrying on.
I'd be tempted to try if I were you.
Good luck
Dawn.
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hi Jenni,
Just caught up with your post - sounds very distressing.
I hope option four works out for you - did they give you a timescale as to when you can start the drug?
Poor elderly couple - where the hell were the porters?
Take care xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Southampton
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Hi Jenni
Hope option 4 works out for you.
Did you go to the General for your appointment? Just so I am prepared for when I go to my outpatients appointment in October.......
Cannot belive how the elderly couple were treated - hope to god it doesn't ever happen to my Dad (he attends the Royal Berks in Reading); the hospital would never hear the last of it.
Caroline
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi Jenni
How very distressing for you. That's just dreadful, the way the lady in pain was treated.
I hope you get an answer soon.
Love Shirley x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Jenni
I was thinking about you yesterday. I am so pleased that there may be a way forward for you and let's hope the new drug from America will be your salvation.
Unfortunately we now live in an uncaring society and there are so few of us that have a conscience. One day those awful people who watched the elderly couple struggle will experience pain and old age and then I wonder if they will remember how they stood by and did nothing. It makes my blood boil.
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello
I used to go to Winchester, but in the end I needed specialist care and went to Bath- I still havent met a better OT than the one at winchester though!
I have to say, if you ever needed a really thorough physio assessment including how much function etc they really cannot be beaten at Bath.
We had a baby and I left her twice for me to have treatment there but leaving a 5 mth old baby was so so much to cope with.
So I went to see southampton after there wasnt any drug option at bath for a second opinion. By then, I had endocrine issues too and so thought it best to be "under one roof".
Southamptons research dept is really cutting edge stuff and so it seemed the right choice at the time.
Its a nightmare getting to see them though!
I do like the rheumatologist at winchester but there were no drugs or inpatients support either and I at least need 1 of these!!!
Plus, had pretty grim inpatient experiences at winchester with nutty patients- wandering in and out of the bay for MRSA/ C-diff patients and giving it to me.....
After being left for a day once unable to feed myself and people just took the tray away and being told by the sister that no one would believe me if I complained... Plus their scheme of duty drs who declare me alright for home when you cant move...
Its not all like that, there are some fab nurses but drs its altogether more of an iffy gamble...
My consultant is dynamic, interested and not giving up. He understands that his colleagues look at my hands and think "she cant have it badly!" and then cant understand why Im taking the top end drugs and ask patronisingly if I am seeing someone called an ON-COLO-GIST....!
The answer is, how many 35 yr olds do you know with hands like mine.... not many...!
not any in most cases!
ANyway!
I am pleased to say I have managed the CT scan and I didnt have to have my arms above my head.
I have no appointment as follow up.
the hospital lady who did the CT was just lovely and explained it was no bother re the arms and to simply ring the consultants secretary in 2 wks explaining I was trying to find out about the results.
She said that the CT showed clearly and my understanding of the XRAY being also clearly visible that it will all be clearly confirmed. I just hope I avoid biopsy.
I dont much fancy that!
I have been a bit tearful this evening. Its all so serious and gloomy this evenin!
Come- on Jen! Chin up eh?
Thats what my Dad would say!
Love to all
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jenni, Glad the CT scan went ok for you and hope you can get the results soon. Have a rest tonight ,then tomorrow get the tassels tarted up ready for the weekend!  Don't forget to practise the new pole dancing routine for Friday night. Jean says she's got it right but we can't be too sure of that after last time can we?  Sending hugs, love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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ha ha
i cant get the "shimmy to the left" part?!how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Jenni,
So hope everything works out for you and you are feeling brighter today.
Really awful to hear about your experience at the hospital, but unfortunately it is a common occurence nowdays and so many people accept it as the norm.
Bring back the old fashioned matrons and they will sort it out.
Anne x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Oh Jenni, what a disgusting way to treat the old couple. I hope that the new drug helps and that you get the support that you need to try it effectively. Too often the system, ie no regular appointments and so on, sets us up to fail. Get ready for Zara's hen do. We set sail when we have the date and venue.  Please discourage Julie bringing that talking dog. We have enough with Neddy and his seasickness. Will you be bringing Bernice? Wouldn't seem right without her.
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