ADVICE WANTED.

[webster]

My husband started with IGA in 2000, he was given 2 years before he would need dialysis and a transplant. He managed to get to 2010 before he went on dialysis, he worked up to the day he had his tube fitted. He was a sheet metal worker and was advised not to return to that type of work due to heavy lifting and its a very dirty job, but with doing the same job for 40 years he didn't know what else he could do.

He had his transplant in August 2011 but didn't come out of hospital till December 2011, he had a lot of complications. 2012 was also a very troubled year back and forth to hospital every 4 weeks. 2013 as not been too bad but he has had trouble with his anti rejection levels. which meant weekly blood tests. Back in clinic January.

My problem is he doesn't feel well enough to return to work, he is always tired, out of breath, dizziness, all sorts of ailments but ATOS are now saying he should return to work, they are stopping his ESSA and only going to get JSA. We are appealing against their decision.

When I read a lot of posts on here, people seem to be getting on with lives and returning to work, so why does my husband still not feel well enough to return to work?

I am the one that does all the worrying, the neph. said his kidney should last about 5 years the kidney was 78 years old when transplanted, 2 years have already gone!!

I really thought after his transplant everything would be back to normal!

Stressed.com

[jbell]

Hi there I cannot give you any real advice as I have not evan started dialysis yet. I really just wanted to say how sorry I am about your situation and sympathize with the worry you are feeling. Have you spoken to anyone i.e drs, citizens advice centre regarding your rights as regards to claiming benefits ? Sorry I see you are appealing I hope that works out in your favour and I would really expect your dr to back you up. I just wanted to say hello and I hope someone on here can help you. keep posting you are not alone, good luck janbelll

[madonbrew]

Hello, I cannot offer advice either, however, I would say remember everyone is individual, and how one person recovers isn't the same as everyone else!! Your husband had obviously had a rough time the past few years! Like JBell, I would say speak to your doctor and get them to write a letter to the benefits place - if he really is genuinely still poorly, they can't make him go back to work.

[lizbee]

I can.t say anything about the transplant but I do have experience of ATOS in fact I am expecting to have to go up against them again for the third time.......your husband must have filled out a form when he was first contacted by them did he give all the doctors he attends names, I know how worrying this can be, I know of friends not with kidney problems but other illness and they were also told to go back to work, they appealed and won but it was a long battle. I fail to see what these people at ATOS will know that is better than your consultant at the hospital but it appears that they do.....your husband must be worried sick and this will only add to his stress, please do appeal and get everyone involved with your husband medically to give you a written report and hopefully they will reinstate his ESA as soon as they can.....good luck

[webster]

Thank you all for your replies. The hospital secretaries fill in the forms which I don't think they know everything about the patient. The nurse at my husbands GP as wrote a letter and helped to fill the forms in. We are still waiting to hear from them. Its just one worry after another.

His surgeon made a comment to us, "I make you better, not worse!" but my husband still not 100% well.

Thank you again,

Happy New Year to you all x

[Unifluzie]

You need to fins out if your clinic has a renal social worker attached to the clinic, they are extremely helpful and may be able to give you more advice and advocate for you.
If you are at clinic speak to your transplant nurses and see what they say, they are there to help you and will know how difficult of a time your hubby has had

[jooles]

Hi Webster
What an awful worry for you both. My advice would also be to engage the help of your consultant / transplant team and renal support team. Keep on at all of them! I wish you and your husband all the best. I really feel for you spouses who go through all the worry with us.

Jooles

[webster]

Thank you all for your replies. We are at clinic next week and we are getting a list together to ask the clinic/renal team a load of questions we need answers to.

Thank you