I’m really sorry if this sounds like a rant. It is a rant 😊. Please don’t feel you have to read or comment I’m just feeling better writing it all down! I have to do regular urine tests as I developed class 4 lupus nephritis during lockdown. But my tests have gone missing / not worked 4 times out of about 10 tests. I leave them in the dedicated place in the hospital but no result! Is it me? What am I doing wrong? How hard is it to pee in a pot and get a result! I’m fed up of being ‘patient’. Every time I pee in a pot it’s a reminder that I’m a sick person that I’ve got something like a 1 in 5 chance of progressing to end stage renal failure. Every time they lose or don’t report on my sample it feels like a kick in the face, like I’m not important, like my health’s not important, like no one cares. Recently they’ve changed to these new pots with a test tube. But seriously the way it’s engineered you can’t decant from the pot to fill the test tube. Well I can’t anyway! So that makes it even worse! So now I have to be patient, I have to wait for another pot to pee in to be posted to me, wait for another slot in my diary to get up to the hospital to drop it off, wait to see if they will give me a result, wait to speak to a dr. Don’t know when the dr might phone because it could be any day, any time. This is all really stressful! But I will need to make sure I’m next to the phone and focussed not in a work meeting, making lunch, going for a walk, in the loo or who knows when they will call again. It’s like my life where I work, look after kids etc isn’t important or valued. Plus when I do get a call if I’m in a meeting or focussing on something else it’s really hard to get focussed on the call and I always forget something. This week I want to know will I need to go on another immunosuppressant as well as mycophenalate? I need another prescription because only the consultant not the GP can prescribe. Can I reduce my steroids am I on track to remission or not why am I getting these random excruciating pains which come for a few days then disappear? I’m so so so demoralised and sad and disempowered. Plus also I can’t even access my own results without being ‘patient’ enough for someone to email them to me. Kidney patients have a portal, lung patients have a portal why don’t lupus patients have a portal. Please let me have some sort of autonomy without having to rely on some one else. I’m fed up of being infantilised. All the doctors, nurses, other health professionals are very kind but I just hate waiting on others for a sliver of their too busy time. I’d rather be more independent and in control. Rant over.
How to pee in a pot!: I’m really sorry if this... - LUPUS UK
How to pee in a pot!
Preach!! 🙌🙌🙌
"Please let me have some sort of autonomy without having to rely on some one else. I’m fed up of being infantilised."
I'm so so so sorry you're going through this Andfiona. What a farce. I hope you felt a bit better getting it out there.
You sound like you're still keeping those balls up in the air despite the pressure which is very impressive!
I'm afraid I've got no specific solutions other than doing some form of self care because you bloody well deserve it after all that. I'll be yelling out into the fields in frustration for and with you and sending you a virtual hug! xx
Aww thanks for listening insomniacette that’s lovely
Really sorry honey you have all this to cope with. Why are you not under a nephrologist with access to a renal portal ? I have class v lupus nephritis and I have a kidney specialist and access to the renal portal at royal Preston hospital. Rheumatology dont look after my kidneys .My gp gets a copy of results and I can see them on my patient access.i also take mmf as well as hydroxchloroquine and prednisolone .xx
Thank you so much. The renal and rheum agreed rheum would look after me. I don’t know why maybe it’s until I get through first year until they know where it’s going but I don’t know. But actually your experience is really helpful I will ask. Thank you so much for taking the time to respond
Did the renal unit do your biopsy?
Yes renal unit did biopsy discussed with rheum managed by rheum. Renal said to me on day of biopsy they wouldn’t manage it would be rheum
I'm not sure I would be happy with rheumatology looking after my kidneys if I'm honest.i was diagnosed in 2018 and im currently stable .I have had my checks via phone with kidney specialist this year with blood forms sent out to me in advance.im sure there must be a more settled way of doing this for you?. A routine sample showed up issues and i was sent to renal unit as an emergency and i have always been under kidney specialist. have you tried peeing into a jug first that you can sterilise? X
Remember to watch your salt ,alcohol, carbonated drinks and banana intake 👍 x
Totally understand how you feel. I feel the same as you too.
Have you tried going to PAL in the hospital, explaining (complaining!) to them and asking them to do something! Also your GP can send you for an urgent appointment to see the Kidney Specialist - why isn't he doing that?
I am sorry your'e having to deal with all this as well as working and looking after a family. I'm very impressed and am not sure I could do it. I have all on to look after myself and husband, with him doing a lot of the looking after!
I wish you all the best.
Thank you so much for all your help. Where I am the rheum (who is expert lupus dr) coordinates all the other specialists (renal, derm etc) involved in my care as I’ve had sle for a good few years but have only just developed nephritis which I am being treated for just moving from induction to maintenance treatment. I’m sure rheum and renal are liaising but will check that. The frustration re blood results is because lupus doesn’t have a portal. Advice re pals is really helpful I’m trying to get it resolved with lupus team first but like you say 4 times now of no result from a bar coded sample needs proper looking at systemically due to impact on patient care. Thanks so hugely again for taking time to respond. I felt much better for having written it down
You are not wrong! This could be a rant that I wrote.
It’s so rubbish and I wish I had some good advice.
I can tell you I hear you. I agree with you and you are not alone with these experiences ☺️
I enjoyed your blethers and you made me smile (in empathy with you) xxx
Hi Andfiona. I have no advice but I just wanted to say that I am so very sorry that you feel so frustrated, really who wouldn’t? I see People have given you so much good advice here and I hope it helps you. Xx
Thanks so much for taking the time to read and respond
Totally understand your frustration. Rant away. Wish I could help but I'm afraid I can only give virtual hugs ((x))
Thank you so much
Hello Andfiona, I wanted to add my massive sympathies to the other responses to your post - I know all too well the frustrations of having to deal with this sort of thing. Perhaps the worst thing is that the mistakes and repeated 'losing' of your sample could have very serious consequences for the progression or stability of your nephritis. I have had a similar experience and made a formal complaint as a result (that wasn't easy either - but it gave me back a measure of control, and once you have complained they do take a bit more care). If I was in your position I might ask if I could be added to PatientView (for kidney patients), which makes it much simpler to see your results and is very reassuring (that said - the people who fill in results are not very efficient in the pandemic - mine have not been updated recently and I have to ask the surgery for a paper copy).
The other thing I wanted to respond to in your post was your anxiety about the progression of the the nephritis. I have had class IV nephritis since late 2011, and take MMF and hydroxychloroquine as well as a blood pressure medication. If you can get your lupus under control there is every chance that the nephritis will stabilise and your kidney function will come up. You naturally have a lot of spare kidney function, so until the EGFR gets very low you do not need to panic. I am not trying to minimise the seriousness of nephritis (it is very serious) but unless I am in a flare I don't worry about ESRD. I just live my life as best I can. You will have to live with this forever - but once it has stabilised you should be able to have a decent and fairly 'free' life without so much trotting back and forth to the hospital etc. All of that is by way of saying - try not to worry too much. Your body is amazing and can come back from being really horribly ill. Look after yourself and keep pressing rheumatology to be better. Someone else recommended the PALs service. I suggest you also consider a formal complaint.
Thank you hugely Winterswimmer this is massively helpful. I will explore the Patient View. Also thanks for sharing your experience which I really appreciate and is really reassuring. Thanks so much for taking the time to read and respond
I’m in the USA, so things operate a little differently here. All my physicians use portals that allow me to see pan results. A couple years ago my urinalysis didn’t show up. I called and they didn’t have an explanation but said to come give us a new sample. When I went to put the new cup in the magic door between the toilet and the lab, there was my old sample. 🤢
Oh I so so so relate to every word you say - I'm sorry. That's all i have to offer - sympathy and empathy. The disempowered thing is so bad now. And when I walk past my GP practice today I can see all the lights dimly lit but not a patient or a GP in sight. Yet I still can't access my blood results or my clinical letters because of the paternalistic attitudes any phone call is met with and because they all just tell me how hard it is for them now since the pandemic and how busy they are.
It is beyond frustrating and it's not just this way for Lupus patients - it's all chronic illnesses including other rheumatic diseases. I have 3 plus hypothyroid and my endlessly sore hands are doing all their work for them unpaid and I still can't access anything without being made to feel like a nuisance. My insides/ GI are falling apart and then specialists I've waited years to see say "i'm sorry but this is damage done". But itt's me who has to live with it, manage it and deal with the psychological impact as well as the physical.
I actually told my rheumatologist that being ill is like having a full time job unpaid now when she phoned a week ago and I think she understood. But she then sent me to a green zone covid free hub for more blood tests for basic iron panel and other antibodies saying that the walk in phlebotomy clinic was too risky. The hub has been closed for repairs for a month now. I emailed her asking where to go instead and she just replied I'd just have to wait until it re-opens. Could be tomorrow, could be next year? She said she would get in touch again only once these latest antibody bloods are back. Urgggh!
Hugs for articulating so well how I feel x
Access to results is key. I had a fight (which I hate doing) with the rheumatology department just this week. They refused not only to send me my results but also to send them to my GP.
My GP was going to be forced to ask me to repeat tests I'd already done in a pandemic because the rheumatology department at the hospital wouldn't send my results to her. As though they are state secrets!
They only agreed to send them after I threatened PALS but seriously this needs to change desperately. Part of our being able to manage our conditions is being able to see with our own eyes what is happening to us which means access to our own results.
Also in what universe is it good practice to stress out a lupus/sjogren patient for 6 weeks over sharing their own results with them and their GP. Total waste of everyone's time.
🙄
Oh yes - it’s this deep set paternalism isn’t it? I think Covid has brought out the best and the worst in the NHS. For me my hospital has actually been pretty good for the most part. It’s my GP practice that has been driving me to distraction.
But when I get NHS phone appointment letters now I’m told I may have to wait for up to 4 hours from this time for the doctor and to phone so be sure to be ready and prepared - it’s a joke? That said they know I will do it and I’m sure they have worked out that they can rely on people’s goodwill in a time of pandemic.
So it’s like the already very flawed system has found its excuse and it preys on our vulnerability and gratitude for the crumbs of a phone consultation that get occasionally thrown at us?! And any jobs worth or power monger is now able to have a field day and get away with it - compassion and decency out of the window. No one can complain because every cog in the vast nhs now has hero status including those at the behind the scenes who manage and bring about this awfulness.
Also I always ask doctors and consultants to copy me in - so when they don’t it drives me to dark places because I know I’m going to have to chase via usually disinterested secretaries or worse.. my GP practice.
I’ve been shielding and had an additional diagnosis of another horrible disease - systemic sclerosis - during this pandemic. Who needs to be sent to even darker places? No wonder the BSR have found that significantly more with rare rheumatic diseases have died during this time than the average mortality. This stuff would trigger even a non autoimmuner let alone us!
I spoke to one colorectal consultant surgeon’s secretary and asked for copy of his letter many times and she just kept saying there have been secretarial delays - but I’d changed medications and systems at his express request. It was all perfectly polite exchanges and I finally extracted his long letter off my awful GP (who always calls me by my Christian name but introduces himself as doctor!) and it seemed to have been written and sent weeks earlier.
Then the surgeon’s secretary phoned to tell me to expect a call from him same day - he was in theatre so he’d call when he could.
I understood this and again waited 4 hours. He was lovely and polite and apologised sincerely but was baffled because he recalled expressly telling his secretary to copy me in? He said I must have thought (since we have never met and spoke intimate details about all sorts in causing possible stoma and poo!) I’d imagined the phone call- ha ha yes that’s it I had started to wonder - as it was a fairly huge and potentially ground breaking and care altering conversation for me.
Sorry I’m on a rant now but honestly I think it’s endemic and systemic and has just been brought out by a pandemic - basically lots of MIC! 🙄🤗
Coming apart at the seams just in time ⏱⏳👨🏽💻
Still totally confused
I don't have a magic wand
Hospital Update 
