I have been left in "pending" apparently!
For those who are bot aware I have been screening for Enbrel since 27 February when I had blood teats and met my Rheumy nurse. Since then xrays and TB and all manner of GP visits due to despair and pain as I am flaring badly with swelling.
I had been waiting for confirmation after a root canal on 9 April I didn't need antibiotics so could give the nurse the go ahead to tell the healthcare at hime team i could have the Enbrel. I did already alert her to the fact I would be available mid April even if did need antibiotics.
I last spoke to her before yesterday the Tuesday Easter and was told she was registering me with HAH and it eouod be dine whilst she was on holday.
I had heard nothing last week and phoned to try speak to her to confirm no antibiotics required for my tooth and found she she on holiday. Each day I am experiencing more and more pain and I am now on Fentanyl 50 transdermal patches which take some of the soft tissue pain away but I am so out of it on these and I sleep most of the day to try get away fri the pain in all my joints.
I spoke to a secretary last week and said I was in such despair and could someone please let ke know when I could start Embrel as i had din all my tears etc. The secretary said last week the nurses were all on holiday and i would have to wait five to
Seven days. I was really devastated as each day my morale is getting worse.
I waited patiently for six days then phoned herder ah to say. I ant take much more and got to speak to the nurse. Ejected ke she ouod chase up healthcare comoAny and gt back to me Wednesday and also that she hadntvreceived my TB result. As I DID three days after it ess taken at beginning of march why hasn't it found its way a very shirt distance down the corridor where they are!
Then today I got a call from the nurse this lunchtime to say that as the hospital haematology had not sampled my bloods in February for Hepatitis C there being a request, that Heathcare at Home won't let me have the drug till they get that confirmation. So I have to go to the hospital on Friday for another blood test. I wonder why I wss left pending as i did remind her just before Easter about my dental. Even that was hard t get in touch and I had been phoning on and off for a few days.
So Healthcare at Home knew there was a blood test missing but didn't chase up at Rheumatology? Haematology knew there was a TB test to the give result to at Rheumatology. The nurses snupld hsbe chased up my progress from the end of February tears and also chased up HAH to see why no confirmation of me being registered with them. As if it isn't stressful enough.
The nurse was ver apologetic but it doesn't help my case when.someone goes on holiday and all stops for me. My pain hasn't stopped. It worsened each day for about three weeks now.
The nurse will Tske my bloodcridau snd Tske to ne analysed straight away and the result on the screen that afternoon she says and confirm all OK to HAH. She wants them to deliver Enbrel to me
next Friday and me to take it to her in the hospital to inject for me so I don't have to wait till Tje following week for my first ije with HAH at home.
I have to say I pulled up the duvet and cried after I heard all this. I felt seized up even more by the evening.
I feel I have been in the hands if sie inefficient people and even if Tne nurses goes on holiday surely someone else can make a phone all to check this or look in my file. She did say to come for a blood test today but I couldn't move. I was in bed when she phoned. I do appreciate trying to things but it should have been all ready and waiting for me to say OK i AK ready after my dentist on 9 April.
So it could be a week on Friday but Who knows.
I can't remember feeling so bogged down with it and I am a very upbeat person. This is making my RA worse.
Anyhow, enough. The Fentanyl is making my eyes close and it is late so off to bed. See what can be sorted out Friday. I AK not wanting to sound ungrateful, but if hadn't chased it I think I would be here suffering all this flaring and seizing till the next
Rheumy appointment mid May.