I'm so frightened

Hello
I'm so sorry to bother you again

My hubby has heart failure kidney failure and calciphlaxis.

My hubby was on DLA and was transfered to pip in 2016 after going through a f2f assessment at home .

He was on home haemo dialysis 3 hours a day 6 days a week anyone who dies home haemodailysis will know it's time consuming and does not make you feel well at all !

Any way here's my problem on 16 Dec my husband had a kidney dead to live transplant i duly phoned DWP and told them at that time the kidney was still not working and the hospital felt to get it to work was let him fill up eith fluid not dailize him till blood work deemed it necassary roughly the every 4 days dailysis treament 5 hours long

They asked me if I was diyalsing him I said no and explained they said thank you for letting us know I must be honest I was crying when I spoke to them as my hubby was really not well

Any way we have had a torrid time of it he now's has a peeing kidney but that's it we have been told the kidney is working but his creatine keeps spiking we have been told at its best it could last 3 years hubby has been told after that he can expect 3 years on dialysis again and he has been told he is too sick for any more transplants this is his 2nd he was sat down and explained that reduced life expectancy of 5/ 8 years at most this turned me in to a wreck over night .

Now my problem comes apart from him not needing daily diyalsis hubby problems are still the same in some cases he worse the drug regime has caused a plethrer of side effects mentally he's gone down hill massively and we have been told he gonna have to go back on dialysis they just don't know when in months or year
Should we contact the DWP again and ask for a 're assessment form I know if I do that we are going to be put through mental stress tears and heart ache
I know no one is going to believe he worse now after transplant like everyone thinks you had a transplant you are Cured! No it's a form of treatment .

We claim no other benefits no ESA no housing benefit nothing we simply claim pip and I claim carers allowance we live on that and that alone 800 pound a month we get the enhanced rate because no way could hubby walk 20 meters with his heart condition we don't hire motability car we use the money to feed our self

Hubby consultant (very blunt man ) said he would send a supporting letter saying apart from no machine he is still a sick man and he has a reduced life expectancy as he has multiple organ faliure the transplant is working but not well

Why am I telling you all this because basically we are frightened should we start storing up the tablets because in this country if you are disabled in any way you are surplace to requirement and your costing the tax payer doesn't matter you paid in for 40 odd years first your a srounger now

I know if we ask for a reassement form they gonna reduce our money and I'm struggling now
My poor hubby is just so down about all this he never saw his life being reduced to being a benefit scrounger

I've tried CAB trying to get an appointment is insane
Tried hospital social worker no chance hospital don't have one !

I just need someone I could talk to and advise me


Hubby needs new glasses can't afford them haven't been to the dentist in 3 years can't afford it if the DWP reduce our money we going to sink

People on low income can apply for a HC2 form which gives free prescriptions, dental care, glasses and some travel costs Google HC1 form to apply