hello to all.

[Notso]

Greetings to you all. It is I,  Notso, saying hello from Darwin Australia.  Darwin is fairly similar in climate to Miami I think.

I am 53 yo and  am currently running with an egfr of 15.  Over the last 12 months I have been dropping 1 egfr point every 6 weeks or so.  I think my time is coming fairly soon.

I was originally diagnosed with CKD about 25 years ago.  It seems I have only ever had one functioning kidney and my functional kidney was very large but scarred.  Never been biopsied and the general opinion is that relflux got me as a newborn.

At this stage I am very lucky to have a younger brother who has offered to donate so I live in hope.  Unfortunately transplants are not conducted in my area so I will have to travel several thousand kilometres to a hospital which does transplants. 

We have one picked out which is close to my brother however for some reason my nephrologist has not referred me as yet and he has been promising to do so for the last 5 months.

In the meantime I am concerned that I will end up needing dialysis and not being physically prepared for it. 

I am at the stage where I am becoming increasingly ill and fatigued and would prefer not to get a chance to hate dialysis if I can help it.

I am well supported by my wife and hope to win the race and avoid the stinking dialysis.

Cheers,  Notso

[Michael Murphy]

Notso, I hope your transplant comes soon.  But I will also say CKD and it’s symtoms are worse than Dialysis.  The symtoms are more debilitating than a treatment.  Find a new nephrologist who will refer you to the transplant group.  I spend about 18 hours a week in or around Dialysys.  That still leaves 150hours to have a life.  Good luck

[Charlie B53]

I have to agree with Michael about the time spent doing Dialysis.  Fortunate for me Dialysis is working quite well keeping my lbas well within bounds.  But I have to admit that I try hard to do my part, limiting the foods I eat, severely limiting the fluids I drinks so NOT to have to rely on Dialysis to have to take off so much fluid at every session.

I had previously started PD at home.  While I did well the amount of time it takes daily can be near overwhelming.  Doing manual exchanges seemed like I was almost constantly stopping whatever chore I was doing to go clean up and do an exchange.  Getting my Cycler machine switched all my exchanges from daytime to nightly treatments.  But I still had to cut my evenings short and get my Cycler ready, get connected, and stay in the bedroom until finished treatment the next morning.

An infection, most likely self inflicted through slightest bit of 'not so carefulness' caused my switch to Hemo.  The infection would not clear, forcing the removal of my PD Cath and the immediate placement of a Hemo blood cath.  I've been on Hemo In-Clinic ever since.   Again, very fortunate for me this is working quite well and the total time is far far less than doing PD.

Learn all you can about both methods of treatment before making any commitment in order to make a better informed decision.

Transplant is a preferred treatment.  But even TP take time. 

Take Care,

Charlie B53

[cassandra]

Welcome to the site Notso


 



And I agree with Michael and Charlie, find a new nephrologist asap!
Take care, Cas

[Michelle2016]

Wish you the best.

[Notso]

Thanks guys.  I am currently favouring the idea of nocturnal  Home Haemodialysis which a fellow from my home town is doing and swears by it.  Time will tell if it suits me and I still hope to avoid it for now.

[Paul]

Hello Notso.

You really bring home the size of your country when you say "I will have to travel several thousand kilometers to a hospital which does transplants". In my country it is impossible to travel several thousand kilometers without falling off the edge and drowning in the sea. Furthest distance you can travel in Britain is 1,407 km, that is from the south west coast to the far north coast.

I think you have made the right decision about what type of dialysis you will go for if you need it, that was what I was going to go for, but other medical complications made this an unwise choice for me in the end.

If your idiot nephrologist continues to fail to refer you then change nephrologist (either that or hit them with a big stick*). However if it takes time, do not wait too long to start dialysis. There is a story passed around the clinic I go to about a patient who was waiting for a transplant, so refused dialysis. This caused a mild heart attack. Not a serious one, no long term harm, except that the nephrologist decided that the heart attack meant they were now not strong enough to withstand a transplant operation, and they ended up on dialysis for years.

*