We all remember our first dialysis session. I certainly do. At the Central Dialysis Unit, just down the stairs from Ward 4, the kidney ward. It was a super emotional time. Julie walked with me into the unit, my heart thumping, my mind racing, looking everywhere, taking in everything. I kept my face blank, hiding both fear of the unknown and anger that it was really about to happen. Everything was new and unfamiliar. Nurses moving briskly about. Patients on dialysis machines in all directions. And there, across the room, an empty chair next to a humming and flashing machine, just waiting for me.
Luckily, the Unit Manager was an experienced and sensitive soul. She knew it was my first session and made sure I knew she knew. “I know you’re not too happy about being here, but we’ll do our best to make today a gentle start to your time on dialysis. *Heather will be putting you on today. She is one of our best cannulators, (more…)
Jack added a comment a few weeks ago that is worth re-posting as a separate topic. It’s a little twist on our most fundamental challenge.
I am a young 91 yr old man who has had systolic kidneys for over 30+ years. 4.5 +- creatinine level. last April (2015) my kidneys finally gave out and after a week in E.R. and another week in rehab. now on dialysis 3 times a week for 3 hours. My last check-up showed my creatinine at 5.9., a little improvement. (more…)
What is it like to be on dialysis?
In my last post I asked for your help in preparing a video for people who have just been told they need dialysis. It’s a scary time and the first thing most people look for is information they can trust. Who better to provide that information that the BigD community?
I was asked for the video by MaryAnn & Rajiv in Bangalore, India. They are putting together a range of videos covering dialysis and transplantation. The video I have prepared has a short introduction then a series of 1 – 2-minute interviews where we asked a broad cross-section of people on dialysis four questions: (more…)
Here is the third Briefing module. As usual, it is not quite as I expected. It was to cover two aspects: Physical, how you may feel before the session; during the session; after the session; when you get home, effect on sleep; and Emotional (Mental): dealing with the new reality; the grief cycle.
I received several very valuable emails and comments on both topics, but especially on the grief cycle. As a result, each turned out to be bigger than expected. So I decided to write one sheet on each topic, beginning with grief: coming to accept life on dialysis.
So here is Briefing 3. Dialysis – from Shock to Acceptance
Special thanks to Devon Texas and Carl from Winnipeg, Canada for their valuable input.
While researching the grief cycle, I found that there are several versions. The 5-Stage cycle is the most popular, but I think the 7-Stage cycle is more appropriate for BigD-ers. However, I found a wonderful summary of the 5-Stage cycle in Wikipedia from The Simpsons, which is well worth repeating:
Dr. Hibbard: Now, a little death anxiety is normal. You can expect to go through five stages. The first is denial.
Homer: No way! Because I'm not dying! [hugs Marge]
Dr. H: The second is anger.
Homer: Why you little! [steps towards Dr. H]
Dr. H: After that comes fear.
Homer: What's after fear? What's after fear? [cringes]
Dr. H: Bargaining.
Homer: Doc, you gotta get me out of this! I'll make it worth your while!
Dr. H: Finally, acceptance.
Homer: Well, we all gotta go sometime.
Dr. H: Mr. Simpson, your progress astounds me.
The next dialysis briefing sheet, Briefing 3 will be titled: Dialysis: from shock to acceptance. The sheet will cover two aspects:
- Physical: how you may feel before the session; during the session; after the session; when you get home, effect on sleep
- Mental: dealing with the new reality; the grief cycle.
Before starting, I would be very grateful to receive any ideas you may have on this topic: what you experienced; things you think could help others; what you would have liked to been told; things you did to get by, etc.
Please email them to me at greg.collette (at) gmail.com, or post them as comments on this post.
As usual, the result will be a two-page Briefing which I plan to post next Friday.
I look forward to hearing from you!
In my last post I wrote about preparing some training materials for BigD-ers everywhere to learn a bit more about dialysis and how to get the most from it. I started writing the first module this week, and realised that I’d missed an important topic: answers to those questions that flood in when you first find out that you need dialysis. So that’s the Briefing module I am putting up today. It’s called Starting Dialysis – Everything You Want to Know But Were Afraid to Ask. (more…)
Last week was a big week for questions, and rather than answering them in the Comments area, it seems like a good idea to discuss some in a post.
First, Dan wrote:
Hi Greg, I’m 30 years old and I have PKD, I’ve had a transplant which unfortunately failed in January 2012. I spent a few months training to do haemo myself so I could do it at home (thinking that would make it much better) how wrong I was! I’m not sure if it’s my age and the need to stay active but dialysis is driving me mad! I get very fidgety and agitated especially when I’m on the machine and sometimes I get so angry when I’m on there I just want to smash the bloody thing up! (more…)
Over the Christmas holiday time both Peter and Armand left comments about their nervousness starting the BigD, Peter for his soon-to-be wife and Armand for himself.
They are not alone. Everyone gets nervous about starting something as dramatic and alien as the BigD: the needles, being a patient, the machine, watching your blood go round and round through the dialysis kidney, the time commitment – it is a big life change. Also, most people feel very unwell by the time the starts dialysis, so unwell that they can no longer work or play. Things feel bleak.
But after a few weeks on the BigD (more…)
Last week I received this moving email from Emily, describing how she and Edward (not their real names) felt when Edward eventually began dialysis. I am sure it will strike a chord with BigD-ers and their partners/carers everywhere. She also had lots of questions, like we all did when we started but were too embarrassed or didn’t know who to ask.
I think Emily’s email, and maybe my answers, will be relevant to many other members of the BigD club, not the least because they will realise that they are not alone. (more…)