Piff Poff

Hy guys,

Just before Christmas last year my husband announced he wanted to live in a bungalow, by the sea. A complete turnaround from moving to Ontario. I still want to move to Ontario, my daughter is there.

Yesterday we found out my husband will be requiring dialysis/kidney transplant in the not too distant future - Dr was prepared to start in the next couple of weeks, husband is doing a great impersonation of an Ostrich.

My question is, will this cause a huge issue if we were to return to England? Or would we set up initial care, sign on to a Dr and carry on with ongoing treatment via NHS?

Any insight would be welcome.
Thanks in advance.

Stelly

Oh crikey. First of all, massive hugs as it's a lot to go through. We supported my husband's father through dialysis and it was so much to deal with.

I know it works differently in UK to how it operates in USA. Not sure how Canada works. Here we had to get him a slot at a kidney care center. That was a nightmare at first - we ended up driving him 3 nights a week for the slot from 7pm - 12am. It was exhausting for us. The treatment took a lot out of him. Here they were all in a big recliner behind a curtain in the lower level of an office building. In the UK my friend was a renal specialist and said the patients are in one room right next to eachother so they become friends and chat.

I will say that given our experience, I'd want to be somewhere where they paid close attention to the overall care of a dialysis patient - we really really struggled to get a Dr who would oversee the moving parts of renal, cardiac, gastro, etc. etc. No one communicated to others. As it was, my FIL died very suddenly and after they were all like "oh yeah, well cardiac issues are common" and we said "why did no one tell us this?!?" no Dr ever said "oh you need to have him regularly get checked by his cardiologist" - it was a nightmare.

For that reason I'd be drilling down into the details of what is achievable in either country. I bet there are some kidney forums on facebook and so on you could jump into for UK and that might shed some light on it.

Good luck.

Piff Poff

Thank you so much for your reply. I'm trying to face this head on, I spent a sleepless night crying on and off whilst my Ostrich was snoring away. It's going to be such a massive lifestyle change, from jobs to hobbies to where we live and our retirement plans are now non existent- poof - just like that gone.

I'm very much a need knowledge and plans person. I have been told kidney disease doesn't kill but other organs breaking down as a result does. I have a feeling he will decline treatment.

Stelly

Oh massive, massive hugs to you.

Honestly, from having done this side of it, I'd want to stay where I had a very good network of people to help support you, the carer, alongside the patient. We had to enlist friends to help drive him to dialysis the time we went away for a weekend. We needed to know someone who knew someone who would cook appropriate meals for him (which he refused to eat, fun fun!), and just generally relied on the goodness of friends.

We were super disappointed by the behavior of the medical staff we encountered, but this has been across the board in the US for all of our family. They just don't want to communicate and the onus is on you as the patient/carer to find out everything and push push for help. My father in law resisted everything very strongly. But even with my own hearing issues I feel the doctors don't really care and there is no whole-body approach to things. They do what's in their little box. It seems UK is similar from what I hear (no pun intended!).

There were people in his dialysis center who had been going for years and had regular, fulfiling lives. So there's definitely hope. The people in the dialysis center here were also LOVELY. They were super communicative with us, it was just the doctors/specialists that were lacking.

I hope he will come around to seeing it as a new opportunity, rather than a burden, but I hope he will take your lead on whether you should move or not.

Piff Poff

@stelly, thank you so very much for your insights so much to think about. Xx

brits1

So very sorry to hear your news and sending hugs. What have the doctors said about a transplant? How long is the waiting list and are any family members a suits match? If the case looks better in Canada then I would stay until “treatment” is completed and then discuss a move, I think you just need to concentrate on your husbands best options for treatment at this time. Sending you hugs x

Piff Poff

He needs dialysis 1st to bring his BP down before a transplant is considered. Without a living donor wait list is 5 years. I will be tested. Only other family member is in UK.

Once dialysis starts hubs won't be able to do his job our income will be severely impaired so it's a case of moving yesterday or not at all. I hate where I am.

brits1

Will you get “help” whilst your husband is on dialysis? To help with the cost of living etc? I would try and find out (maybe help from your family in the UK) if you were to return how soon would dialysis start (it will differ from area to area and would you receive financial/benefits help when here? Maybe getting this info asap will help with your plans, It’s horrible when life “throws yucky things at you “ but try and keep positive and work on which plan is the best for you and your husband. Good luck and as my DF use to “life works out in the end” x

Lion in Winter

Sorry things are so difficult. I'm not being rude but I have no idea how old you are so if either of you are close to retirement I would suggest talking to AgeUK about what benefits or support you might get in the UK - either him, or you as a "carer". It wouldn't be a lot, none of it is, but it might help a little.

https://www.ageuk.org.uk/information...-entitlements/

Some of the benefits have nothing to do with age, but Age UK is a good org and knows its stuff.

Here is some more info from the kidney people.

https://www.kidney.org.uk/disability...%20each%20week.

Piff Poff

Thank you wonderful ones.

My husband is refusing to talk about this situation. I think he's hoping it will go away on it's own.

I think if we were to move back it would have to be after a new kidney. Once dialysis starts I think we'll be hooped.

Whatever happens we need to move. I cannot support our mortgage and bills on my earnings. I will have to find a second job as it is. There is no one else (family) in the world that can financially help us.

Lion in Winter

He must need a little time to process this, as indeed do you although in a different way.

Do you/he qualify for any sort of disability payments in Canada? I'm sure they won't pay mortgages, but every little helps.

Piff Poff

Oh I am 100% certain he knew the 'suddenness' of this development long before I did. I found out Monday how imminent all this is. He is doing a great Ostrich impersonation.

jarv5116

My grandad was on dialysis for about 15 years in Scotland.
He used to go there times a week to the kidney ward at the hospital.
Used to send patient transport to pick him up and drop him off at the house 3 times a week.
He had really hood care throughout his later years of life. He lived till he was 82 and passed away in April this year.