Living with CKD

[Philipjm]

Hi to all sufferers out there, I have posted before but just wanted to update to encourage new ckd sufferers.

I started on CAPD for two years but due to an infection moved to HD and for the last 12 months on home HD. For the last 6 months I have been doing nocturnal dialysis at home every other day, have just this week changed to 3 nocturnal sessions and two 3 hours evening sessions. This is giving me around 400 litres of clearance per week which as my consultant tells me is as effective as a transplant.

I now have choices, continue or go for the transplant if and when I get the call.

My life is good, work full time, I am 72 and feel healthy with very few if any problems.

The only down side is that I have to connect to my nxstage Maxine 3/5 times a week but that is a small price to pay for living.

I can take my machine with me for holidays, planning a trip to Australia next year to see my new granddaughter.

Ckd and end stage kidney failure is not the end of the world and can be managed.

Work with your renal team in your hospital.

I have a dedicated renal nurse who will be on oh doorstep during the day if I have any problems, not had any for several months.

I I have problems overnight I call a free phone number in USA and have fantastic support, they are magic.

Work with your hospital renal and dietician teams, have a positive attitude and you can be “normal” whatever that is.

Have faith and enjoy your lives

Philip

[Hidden]

Glad to hear that HHD is working for you. Enjoy your trip to Austrailia.

[Charlene_Coxhead]

You've adapted to live on hhd so well and encourage others that it can be done and carry on with a normal life. I myself am just starting training to do hhd and having home adjustments done. My unit is fantastic too so getting ahead of the game and learning hhd prior to starting in Jan 2019. The nachine is an AK98. My consultant is working hard with me to give me a dialysis free Christmas.

I'm glad you've had a great team to help you achieve a great care plan. I'm on the transplant list and even if I did get the results you have achieved I do feel a transplant is the best thing for me. Are you going to get listed?

Have an amazing time going to Australia seeing your granddaughter.

Charlene

[steve680]

Thanks for sharing this. Do you live at home by yourself? I do and am curious about HHD as a possibility. Also, with getting dialyzed that frequently, I'm curious if you also need to manage anemia (with EPO injections) and/or parathyroid issues (with active vitamin D pills)? I guess my question is if a person has well-filtered blood if anemia and intact PTH become less of a problem.

[Philipjm in reply to steve680]

Hi Steve,

I am at home with my wife and we use the Nxstsge machine.

I can do it all on my own but my wife wants to be part of the process. I do know a few people who do it alone.

This would depend on your unit and if they felt you were able enough.

I have taken alfacalcidol before I started dialysis.

Every two weeks I take 20mg of iron which is added into my dialysis via a port. I don’t need epo as my haemoglobin is ok. I take my own bloods when required deliver to the hospital and usually can see my results on line via patient view.

My machine is portable and will be taking it to Australia for a holiday next summer.

I started 5 times a week for three hours in the morning but now do nocturnal every other evening for 7 hours, this is as effective as a transplant.

Best wishes

Philip

[steve680 in reply to Philipjm]

Thanks for answering my questions; I really appreciate it. One other question I thought of is since your blood is getting cleansed of all the toxins and other waste in it, does your creatinine/GFR measure normal after doing dialysis?

[Philipjm in reply to steve680]

Hi, creatinine, before dialysis up to 900 and at best will ever be on dialysis of around 350. Egfr is irrelevant as this is a false reading while on dialysis. I take renovit tablets to replace vitamins stripped out during dialysis

Philip

[WYOAnne NKF Ambassador]

You have the right attitude! As in everything, that is so important! Best of luck to you on your trip to Australia to see your granddaughter!

[Smokey2Gabby]

Thanks for sharing your story. It is so encouraging. I am at Stage 3b and by changing my diet to a plant based diet my GFR went from 34 to 38. I saw a kidney doctor but I did not like his approach - (does not feel change in diet is necessary). I was told to come back in 2 months. I will see a new doctor who is more committed to stopping the progress of my CKD. I will meet with a Nutritionist this week and I hope she is more on point than he was. Again, thanks for your encouragement. It is good to know that there are dedicated people in the Medical profession. I just have to find mine. Thanks again.

[fleo]

Thank you for your informative and uplifting message. I am in that initial stage where everything is new, fear of the unknown, scrambling to gain knowledge and mentally preparing myself for things to come. The more I learn makes me comfortable with the process and potential outcome. I will have dual access surgery this month and still hope to defer starting dialysis until necessary, starting with PD. I think I am comfortable with the mechanics, at least for someone who hasn't gone through them. My sense in research is that a positive attitude, for whatever is thrown at you, is the major contributor a successful outcome. Again, thanks for your post.