Starting the dialysis journey

[ChordomaChampion]

Hi, mom is 80 and has CKD stage V (eGFR 8-10) in addition to diabetes. We’ve been avoiding the dialysis discussion until she had a recent minor fall, likely due to losing balance and dizziness. Speaking to palliative care today but would love to connect with other families who have had some success with the treatment. Mom is the primary caretaker for dad who had a stroke 2 years ago and is partially paralyzed, and they both want to live independently at home. At what point did you make the decision to start, what did you wish someone had told you that you didn’t know before?

Thanks

[ChordomaChampion]

And if anyone happens to be in MA, that would be a bonus!

[Dialysis_Saves]

Hi There,

To give you some solace and confidence, I have been a dialysis patient for more than 12 years now. While your mom is quite older than me, I presume she is pretty active considering that they want to live independently.

I have a blog with all my experiences over the last 12 years that might help you. You can read it here: medium.com/12-years-and-cou...

Happy to answer any specific questions you have.

God bless...

[Imaanforever in reply to Dialysis_Saves]

Hi Dialysis_Saves.

I just read all your posts on you site and I tell you, it’s inspiring.

I went through the shock, denial, depression and all the low moods when I started dialysis. I’ve heard and read all sorts of gloom and doom that could happen to me. I have lived in so much fear for the past 2 years that I have been on dialysis. To make it worse, I also have sickle cell anaemia which is what probably damaged my kidney. I look ant my kids and wonder how long I have with them? Will they suffer when I’m gone? Who will be there to kiss their booboo? I was an emotional wreck for 2 years.

Until I decided to live life on my terms, spend more time with my kids and do what I love. I decided to get closer to my God and believe positive things, welcome positive energy into my space.

Of course I would often have low moments but I don’t let them linger for long. I appreciate life and every moment spent in comfort and painless.

It is so hard being in dialysis. You have to be in it to understand.

Yet this is someone who has been going through it for 12 years!!! Was it just high blood pressure that led to your kidney failure or other issues? Also are you hoping to have a kidney transplant and is there a waiting list for a kidney transplant in India?

[Dialysis_Saves in reply to Imaanforever]

I had a bout of nephritis when I was a kid and that started the fibrosis at a slow rate. When you are young you ignore the symptoms and think to be invincible. Also, kidney disease awareness was very low at that time in India. BP was also a contributing factor when this came into light. Yes, there is a waiting list in India and I am on that. Let's see when my number comes up. Keep your chin up and things will turn for the better. God bless....

[chicablue]

I am stage 5 also, for several years now, I'm so glad I didnt let them talk me into dialysis! I am still stable and doing fine without it. I am 78 years old.

[Eightball111 in reply to chicablue]

Can you please provide some tips on how you have been maintaining at Stage 5? Thanks

[chicablue in reply to Eightball111]

Well, I have several other conditions that all of a sudden appeared which helped me with my diet. The first 25 years I tried drinking water, never really liked it, but after awhile when all the things I do like kept making me sick, it was easy to know what I could eat, not much! I found the best thing to do is listen to your body, other peoples diet plans didnt work for me. And now that I have a heart condition, I avoid excess water I finally gave up steak, that seemed to help. But I have pancreatitis, and eating too much solid food will make me throw up. I also have genetics on my side, a longevity gene on my mothers side, I am sure is helping me out. My grandfather lived to be 103! Good luck!

[Juventus-Arsenal]

Hi there, we are in a similar situation. My husband is 67 and GFR of 11. Trying to choose between PD and hemodialysis. People is he is in denial and dosen't want to do either...