New consultant

After all these years seeing my Lupus consultant I will see a kidney consultant on Thursday for the 1st time since starting dialysis. It'll be weird seeing someone else and talking predominantly about something else from now on rather than just how the lupus is doing. The plan was to alternate between both consultants to see how I'm doing, wonder if that will be the case still. It's down to the lupus consultant when I'll go on the transplant list so here's hoping the lupus is behaving itself and is being kept at bay now

[Hidden]

Oh my Kitman, I’m so sorry that things have gotten as far as a transplant. Please keep us posted. We will keep

you in our thoughts and prayers. 🙏

[Hidden in reply to Hidden]

I will do

[overnighthearingloss]

I have had appointments with consultants from various specialities over my patient life. At all times I have remained under the care of my lupus team. It's useful if they copy each other in on the clinic notes to ensure all know what is occurring.

If you think that may suit you, it's worth mentioning it in case it is overlooked.

You may think you have one body but there are definite start and stop points between specialities. 😀

[Hidden in reply to overnighthearingloss]

That's a question I'll ask about working alongside each other. Thanks

[Barnclown in reply to Hidden]

😍 Well Said ONHL 👏👏👏👏

😍 Glad you posted, KM! For what it’s worth, my impression is that when we have severe chronic internal organ involvement that meets NHS criteria for ongoing monitoring + care , the NHS ‘tries’ to have the specialists in the specific organ affected sorta ‘hook up’ with our lead clinicians. So I’d hope your rheumy + kidney consultant will copy each other in on reports & 😯 MAYBE even have a chat about your case (especially during critical phases 😉)

Eg my primaries are AID/CTD (SLE + hEDS) + PID (the CVID Hypogammaglobulinaemia) AND I’m now in Intestinal Failure (considered the rarest type of organ failure) , and I’m getting this sort of ongoing monitoring & care from my LEAD clinicians: GP+ rheumatology + immunology + gastroenterology (all at the same univ hosp, 😅 thank goodness). as well I do regularly attend several other clinics for chronic severe immune dysfunction & connective tissue disorder-related multisystem issues (2 of these are at my smaller more local nhs hosp)

BUT: I STILL have to CONSTANTLY & actively & conscientiously coordinate all my care + play my own patient advocate...what a life we 🦓 lead...we tend to have to ‘help’ our medics as much if not MORE than they help us a lot of the time 🤷🏼‍♀️

Hope you’ll keep us posted, take care

❤️🍀❤️🍀 Coco

[Hidden in reply to Barnclown]

Thanks I will do

[Barnclown in reply to Hidden]

😍👍🤞❤️🍀💐

[svfarmer]

Sending hugs 🤗 to you x

[Hidden in reply to svfarmer]

Thanks

[WinterSwimmer]

Wow - I can't believe you have got to the stage of needing dialysis without having seen a nephrologist already. I see a nephrologist primarily - who TBH is much more useful than the rheumatologists in many ways, because he seems to actually have an idea about what is going on and the tools to deal with it. So nephrologist anywhere from weekly to quarterly over the last year and rheumatologist only twice (and only then because I made a massive fuss).

Very good luck with this, Kitman - I will probably be you in a few years, so I watch your progress with interest. Look after yourself - and good luck with your new specialist.

[Hidden in reply to WinterSwimmer]

Thanks, I have seen a consultant before but this is the first time seeing one where I am fully under their care.

[Freckle1000]

I've always believed that with high immuno - suppression we make for great transplant recipients - less prone to rejecting the kidney etc. ( I understand the need for the Lupus to be under control though )

Where I'm from ( Australia ) I've found the renal specialists to be better than Rheumatologists. I know you have a different sytem over there, but if you can I think it's important that you seek out a renal specialist who's also lupus savy and someone you can trust.

With me I'm at the point where I'm willing to walk around with a slightly over supressed immune system to keep the Lupus at bay as it's agressive. I know this comes with its own risks - but it might be something to discuss with both specialists. I kept flaring for ages - after a renal flare in 2015 - and things just kept going down hill - until I found a renal specialist ( via Google) with a strong lupus background who put her foot down and drowned me with medications which was ultimately life saving.

I hope you can transition to dialysis without any hiccups. Like wintersummer I expect I'll be hooked up to one of the things one day.

It all must be a very confronting transition for you.

I hope you're coping.

xoxox

[Hidden in reply to Freckle1000]

Thanks, I've actually taken to the dialysis very easily and have got used to it quickly too. Pain in the back side but it's part of my every day life now and something that comes naturally

[Freckle1000]

That's good to know 🙂- thankyou. I must admit the thought of it fills me with some fear and dread.

I'm glad to hear that you've adapted to it well.

[Hidden in reply to Freckle1000]

Hi Freckle1000, thanks. Literally just back from the consultant and all went well. Upped blood pressure tablets and will see me in a couple of months. The water retention is going down slowly and it seems that the dialysis is working grand and starting to show improvements in my results. Any questions feel free to ask

[Freckle1000 in reply to Hidden]

I'm glad things are going in the right direction with you're health and hoping you're feeling stronger and better in yourself as things go along.

Thanks for the very generous offer of picking you're brain ( and experience ) with questions.

It's much appreciated. It must have been a scary and difficult road to get to where you are now.

Xx.

[Hidden in reply to Freckle1000]

Hi Freckle1000, thank you. It's been a long and frightful journey to get here and I'm sure it's gonna be a bumpy one for the foreseeable future but there will be light at the end of the tunnel, be 1, 2, 3 or however long it may take but there will be a happy ending. Coming on here has certainly helped the journey too, good to listen to what other people have or are experiencing and to know that it's not all in your head and there are other people fighting the same battle.

[Freckle1000 in reply to Hidden]

I hope that happy ending comes very soon for you.