Here we can all be heard for a little while. Part 3

pollyanna_26

Do you have a bubbly bulldozer or other form of support nowadays WaS? It sounds as though either they or a hospital almoner may be able to sort something











regarding taxi fares . My dd is still unable to travel on public transport although she finally got her BPD diagnosis a year ago and has had intensive therapy to unpick 20 years of damage after wrongly being diagnosed with Asperger's.
I understand how expensive taxi travel can be . I've been funding the fares for years as her pip doesn't cover all her needs. I know of people who do get assistance with travel costs. Wales has a reputation for a fairer nhs system

If you or WaSp don't have either social workers or other support it may be worth looking online for advice , I know CAB are under a lot of pressure but somewhere like them or even MIND etc may be able to point you in the right direction and things can be sorted online .
Good luck
pollyx


ETA Sorry about the strange format tried to add to the post and things went haywire. I forgot to add it is worth looking into someone possibly supporting you at the hospital .

dandy-candy

Hugs to all in need right now.

Sending out good blessings to WaSp, I hope they can get his kidneys functioning. WaS do you have anything that gives you comfort like a cuddly toy, special scarf or piece of jewellery you can take when you have to make the journey alone? I have a pendant I bought at a hippy festival with certain stones which I wear on really anxious days. Weirdly I feel it does help, no different to what a crucifix or similar would mean to other people.

pollyanna_26

That's a good idea dandy. Sir Pugliet could be a good travelling companion until you hopefully find some support WaS.
polly

geminilady

Thinking of you both, really hope you can get some help re visiting. There must be help for people in this and similar situations it is just finding out how to get it. Please update when you can

Pyxis

WaS, there might be hospital visit car transport operated by volunteers, who would only charge the petrol, I think.

It would be worth enquiring if there is something like that in your area.

I can't remember what it's called.




Edit......here's one

https://www.royalvoluntaryservice.org.uk/our-services/getting-out-and-about/community-transport

Savvy_Sue

WaS, your GP Surgery may also have information on local transport services for hospital visits, and as that is somewhere you know and are known, hopefully it's a place you feel you can contact.

Waves_and_Smiles

WaSp is settled in at the teaching hospital now, tomorrow they will take a kidney biopsy to have a closer look at what's happening. I spoke to his renal nurse tonight and she said they know that something made his kidneys shut down, it doesn't just happen in 48 hours flat without an underlying condition or huge amounts of alcohol and medication all at once which he hasn't had. He also wasn't dehydrated. They are going to work on what has caused this and once that is managed his kidneys may start functioning again. The possibilities are anything from heart disease to cancer and many others inbetween, we just don't know yet.

I will look into help for transport, thank you for the advice. We don't know where he will finally be yet because depending on the cause of his acute kidney failure he might be transferred to a different hospital or sent back where he started, it all depends where the specialist help for whatever he has is. Everything is up in the air right now until we know what started all of this.

[Deleted User]

jobbingmusician wrote: »

Oh WaS, so sorry to hear about WaSP. Hardly surprising that you had a meltdown, with all that going on. I do hope they find a nice easy bleed that they can shut off and get him better very soon xxxx Do you have anyone in Wales who can support you with visiting?

Welcome to SSDD23. Just a thought - have you ever considered that there might be elements of autism in your make-up? I think we all have some of this, but the reason I'm suggesting it is that I've got a friend who has always struggled with life, had lots of MH problems etc, but was finally diagnosed with autism at the age of 45. And one of the things she always felt guilty about was not being able to cope with life because everything was too loud, etc. (Which sounds like what you're describing, I mean). And she feels SO MUCH better now she knows there's a reason for this. Just a suggestion (from someone with lots of autistic friends who knows it can be a gift, as well as a curse!)

It's not something I've considered before, it only happens on occasion when I am already overwhelmed with other things and would just like some calm and quiet. Sitting in a noisy cafe today for example with my Nan and all was fine with noise, screaming kids, etc

Feeling a bit better now, things that had gone wrong have started to correct themselves.

I was worried as I am due to go on the tenancy for the house with OH but have bad credit and they had made it sound as though I could do this without being credit checked, and then back tracked. They have now reverted though and said I can be added on without needing it, so no worries there anymore.

Our heating system has finally been looked at after about 6 weeks of randomly waking up/coming home to no hot water and heating.

I think I just have the kind of personality where if a few things go awry at the same time - regardless of how small - my anxiety just goes into overdrive

jobbingmusician

Yes, if you just get overwhelmed when EVERYTHING gets on top of you, you are probably right to discount autism. Personally I find that my hearing (which isn't very good any more - lost almost totally in one ear and the other is age-related) gets A LOT worse when I'm stressed.

So pleased that things are picking up a bit for you.

WaS - how's WaSP? How are you? xxxx (thank you for keeping us so well up to date and do let me know if I can help)

Waves_and_Smiles

We finally have a diagnosis - Rheumatoid Vasculitis. It is a rare autoimmune disease, his immune system is attacking the blood vessels all over his body causing inflammation and the blood vessels to his kidneys are now so inflamed that they are not letting enough blood through for them to function. There is also evidence of inflammation in his brain, stomach, arms and legs. The treatment is steroids for the next year to stop his body attacking itself and a month of daily dialysis while the inflammation goes down. We don't know if he will regain full kidney function, it depends how damaged the blood vessels are after they have had time to recover. Vasculitis isn't curable but the condition does go into remission, sometimes for years. After a year on steroids they will slowly wean him off and see what happens. Obviously a year of steroids isn't ideal and comes with a heap of side effects but if he doesn't do it this will kill him within 6 months, especially if the blood vessels to his heart begin to swell.

Tomorrow I go to Cardiff alone to visit WaSp and take him clean clothes. Even though it's £45 each way I have to get a taxi because there's no way I can do 3 bus changes. To say I am panicking is an understatement. Please wish me luck.