Mental Health During Stage 5 CKD

By Holly Wakelin

2 min read

For those that have read previous articles of mine or follow my Instagram account miss__ckd, you know that I am currently sitting at stage 5 CKD with a GFR of 9.

My function isn't low enough for dialysis, so I am in the awkward stage of being semi-symptomatic which includes being fatigued, having a lowered appetite, itchy skin, and not thinking very clearly. The instructions from my doctors were, if anything gets worse to go to the hospital and start dialysis straight away.

I'm also experiencing normal symptoms of other issues which has been hard to convince myself that it's not my kidneys getting worse. For example, I ate something bad the other day and I woke up in the night feeling violently ill and I thought that the time had come and it was time to start dialysis. Little did I know, the next morning I found out my dad was also feeling ill as we had both eaten the same thing. I spent that whole night in paranoia that it was my last night without dialysis when in fact it had nothing to do with my kidneys.

The unknown is the scariest part

Being on the cusp of stage 5 is an interesting and draining place to be. There are a lot of emotions and symptoms to deal with and I think the unknown is what is that scariest part about it.

I've heard from many people that dialysis isn't as bad as you think it is going to be, but I also think that for anyone who hasn't been through it, it is going to be scary as it is something you need to go through to be able to understand completely.

It is so important to have a support system around you who are willing to hear you out and support you during this time. I've been super thankful to have my mum who will listen to me cry and talk about my thoughts day in and day out in regards to living with chronic kidney disease.

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Seeing a little bit of light

I've also had to go down to part time work instead of a full time role as by body was extremely tired and it was interfering with how I was thinking in regards to my health and I just didn't feel mentally strong. The thought of how tired I was, was more present and it was making it hard for me to focus on anything other than that.

Recently, I have been able to rest as much as I can on my days off, which has also helped me to have more energy and more of my positive and motivating thoughts back in my head.

This has helped for me not the feel that it is such a weight having chronic kidney disease and allowed some space in my head to see a bit of light. It is a work in progress and isn't something that stays consistent, but it is so important to keep your mental health in check while going through the tough times.

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Diane Talbert Moderator & Contributor
Hello <inline-mention username="Holly Wakelin" user-id="6882877"/> , Thanks for sharing so much of your journey with us. I'm not on dialysis, but my youngest son is. I am going through all the things that you talk about. Maybe because it's my child that I carry this burden. He has been doing dialysis for over a year. He does at-home dialysis and still works full-time. I know we are all different and handle things in different ways. I also have CKD, but I don't even think about myself. I talk to my son every day and I am always telling him to get some rest. Like you said that is very important. I totally agree with you. Mental health is very important for all of us. By the way, I have read many of your articles. Thanks for being a great advocate and helping others along the way. Do you have someone you vent to every day? I try not to, but I do anyway. Diane (Team Member)
1. Holly Wakelin Moderator & Contributor
 Hey Diane! Thanks for your comments and following along. Sorry to hear you and your son have CKD. Awesome he can still work full time and mix in dialysis with his daily life. Recently my job let me go and told me to come back once I have my transplant, luckily for me that will be happening early next year so it has been a relief to not think about work and focus on my health. Although I am left with a lot of spare time. I vent to my mum every day hahah im lucky to have her you sound like a great mum as well. I'd be happy to chat further if you wanted to reach out on my insta with any question etc. <inline-mention username="Diane Talbert" user-id="6705270"/> 
2. Diane Talbert Moderator & Contributor
 Hello <inline-mention username="Holly Wakelin" user-id="6882877"/> , I forgot to mention that my Instagram account got hacked a few months ago. It's like pulling teeth to get it back.
Csmrenal3619 Member
Thanks for sharing this. I have renal disease also. I’m a retired RN and am constantly reading about our disease. I understand that if we need dialysis, there is a method to do it at home if we have someone to help us with the procedure. It’s called peritoneal dialysis. A tube is sewn through a small incision in the abdomen. The dialysis fluid is dripped through the tube into the abdomen. Much like an intravenous procedure. I hope this helps. 
1. Holly Wakelin Moderator & Contributor
 I have recently had the tenckhoff inserted, what an experience!!
Diane Talbert Moderator & Contributor
Hello <inline-mention username="Holly Wakelin" user-id="6882877"/> , I hope you are doing well. I believe this is the same procedure my son had. I was there with him and as a mom, I was on pins and needles. He opted to go this route so he could keep up his lifestyle. He has 3 kids, a wife, a house, etc. He has been doing this treatment for about a year now. He's hanging in there. I wanted to give him one of my kidneys but wasn't healthy enough. I know this is a hard road to travel, but keep sharing your journey with others. You never know who you might reach that day.
marymcmahan Member
I was in a similar position, went on dialysis and am feeling much better. My mental health has improved too