Where to get wide ranging advice before starting Dialysis

[goldstar4119]

I am on this board to get help for my brother and advice on how to deal with an increasing series of health problems.

RG, my brother has been diabetes T2 for more than 9 years. Whilst this has in the last 3 years been managed well, the situation is as follows

He has a mental capacity issue, that reduces his ability to absorb issues such as medication instructions, personal hygiene, dieting, and dealing with life. I help with all of these via various routes. He has most of the side effects of diabetes, has worrying levels of hypertension, has Charcot Knees and feet. All of these have now reduced his mobility, so he can only go out in a wheelchair with direct assistance.

His recent bloods show an eGFR of 16 creatinine 327 urea 36.1. These results have worsened quickly, over the last 6 months.

The renal consultant is now advising that RG is at a CKD of 4-5 and dialysis is looking to be very likely. I have discovered that most of the hospitals in our area do not have pre-renal unit counsellors. We need to have detailed review of treatment options related to the ongoing quality of life and well being. I live 40 miles away from my brother and I am his only living relative. RG is currently in sheltered housing, classed as independent living. I have spoken to Kidney UK and they advise that finding this kind of support can be very difficult. RG local GP has no support to offer.

In my view, the priority is to get talking with someone who has knowledge of this sort of point in my brother's life

[cs65]

Hi Goldstar,

I just saw your post today and since I only started dialysis about a year and a half ago I can relate. First of all, can you get your brother's G.P. to refer him to a nephrologist( kidney disease specialist). He and you should see him/her together so you can ask all the questions you need to. Try to prepare a list of questions ahead of time. Basically, the options for treatment include hemodialysis, peritoneal dialysis, and transplant. If you select hemodialysis it is best to have the fistula or graft created well ahead of time (3-6 months ahead). These two offer the least chance of infection and are usually preferred to a catheter. However a chest catheter can be used if the other options are not possible or if you are waiting for the fistula become usable. The surgical procedure is done under anesthesia and he will be able to go home the same day. I prefer to have anesthesia by i-v because there is less chance of nausea afterward. Do you have computer access? Descriptions of all of these options are available online. In the U.S. I go to the National Kidney Foundation and also kidneyschool.org. I don't know the U.K. organizations but you could start with those and get referrals to the ones you need. Good luck and please let me know how it goes!

[cs65]

You should also know that with a fistula or graft he will be able to have a shower. He will go home with the dialysis access bandaged after a treatment. He can take off the bandage and gauze wrap the next day and take a shower. Often times, I have to put a bandaid on the holes if they ooze a little blood. With a catheter he must not ever get the bandage wet, therefore will need a sponge bath around that area of his chest. Dialysis treatments usually take 3-4 hours three days a week and there is at least 1 day off between treatments. He should feel better on his days off, but he should expect to be pretty tired after his treatments. The dietitian at the dialysis unit can advise as to his diet and fluid intake. This should be coordinated with his endocrinologist for his diabetes. Dialysis is scary at first, but he will gradually get used to it. I use a numbing cream on my fistula so I don't feel the technician putting the needles in. The dialysis nurses supply it. He will also probably have to take a phosphorus binder with each meal, but the dietitian can explain this. At my center the technicians, nurses, doctors and dietitian become like close friends. We also have a social worker who can help with emotional and physical needs, set up transportation, financial help, etc. Hope this gives you some idea what to expect.