I Originally published this in October, 2012 but it’s an important issue and I wanted to bring it up again…
I recently read some posts on the Davita Forums about people’s experience getting started on dialysis and how they seriously considered going on or not. The process of accepting and embracing dialysis is much like the process of grief. It have five stages and most of us go through each of them but some more quickly than the other. However, if you’re making a decision not to begin dialysis, you’re obviously at some point prior to acceptance, The five steps of Grief are:
1. Denial and Isolation
Some postings were by people in denial, others who were coming to accept it, and others at points along the way . I don’t think you have to like dialysis but you need to come to a point where you accept it.
Here’s a very heartfelt post by someone who dealt with acceptance and wrote about her journey along the way:
i lasted a whole year before i started getting bad symptoms of the end stage of kd. i was pretty much going to wait it out till i died. i wanted to be happy not dealing with dialysis. i went to a doc apptmt and he told me that i needed dialysis rt away. it took me a couple of hours to get out of my bed and decide i wanted to get it again. so after long hours sitting with my fam…listening to them trying to convince me to go….i went only because i was thinkikng about builidng a life soon with my boyfriend of 3 yrs.
so i went to the hospital to get a access( catheter in my shoulder). the docs kept changing thier mind about when they where going to put it in and where…so i changed my mind. it was a confirmation that night when i woke up feeling pain weakness in my legs…like how i felt on dialysis. that remimned me of how terrible i felt. so i definitely where going to tell my doc n the morning i wasnt doing it. that morning, every doc, nurse came in my room trying to get me to change my mind back. this went on for hours…
then there was this one doc who came in and unintentionally scared the crap out of me. lol she was asking questions about symptoms i didnt even tell her i had. she told me things that no one knew. it made me feel like we were close…she knew how i felt, she also seemed like she cared about me. for real. she told me” do u understand the cautions of this decision? you will die eventually… sooner than you should if you dont do this. i dont think you really do, i think that you are going to go home and think this is going to go away. i think that u are just going to wait, wait until you get worse, till you deteriorate and die”
she was rt. no one knew thats exactly what i was going to do. which sounds like a scary journey. i felt sad about it but i was too scared to go along with the process and deal with this for the rest of my life. i was willing to go home, back to where my life was and just live every day to keep me feeling normal. i was in denial and didnt want to believe that i was.
Now, here i am in dialysis, getting my fix. lol its going ok. decided to go to a different clinic this time. i believe they where under dialysing me or doing something wrong at the other i was at a year ago. because when ever i got off, i felt sick…people told me im not suppose to feel sick; im suppose to feel fine. i hate sitting here for 3 hrs on my ***. BORING [original posting]
I particularly like the poignant moment when the doctor made a connection with the patient and helped her through this process. As the writer said,
“she was asking questions about symptoms i didnt even tell her i had. she told me things that no one knew. it made me feel like we were close…she knew how i felt, she also seemed like she cared about me. for real.”
The doctor made a connection and touched her heart. That simple act got the patient through the process and open to acceptance. I particularly like the statement, “she cared about me“. I’ve written about “Patient-Centered Care” and I believe here is a moment when it took place in practice.
Reading carefully you can see all the elements of the five steps toward acceptance in this one post. You can especially see bargaining as the patient wrestled with herself and others before she started dialysis. There’s not a lot of anger but it’s there. Many people shove anger to the side because it’s not polite to be angry and we’re taught as children not to show anger but it’s there. The “denial and isolation” is definitely present as well.
But it’s important to note that we may regress sometimes during our life on dialysis. I find myself going back through the five steps in small ways on particularly “bad dialysis days”. You know, those days when the tech isn’t sticking you well, or it’s too cold or too hot in the center, or something in your personal life upsets you, and you have to run through the five steps to return to acceptance. So, it’s not over just because you entered dialysis. In some ways, we go through the process to acceptance every time we walk through the Dialysis Center doors.
Update: I almost forgot about this link to a site that writes about Embracing life on Dialysis.
© 2012 DevonTexas
Thank you for the info’s. I am searching for a friend who will start dialysis next month as her creatinine goes up to 12 now even thou she do not want as she do not feel anything. She try to diet for a long time but her creatinine keeps on going up and down. Thinking maybe there is another miracles or food that she can take to stop the dialysis…
There are no miracles but the diet plays a big role. However, if there is kidney disease, there’s little that will prevent her going into kidney failure eventually and needing dialysis. She should be getting prepared. On big thing is the access. She should get a fistula or graft so it’ll be matured in time for dialysis.
And thank you for leaving a comment. If there’s anything I can do to help, please let me know.