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. It’s a PDF, and has the Creative Commons notice, so it can be used freely as needed as set out at: http://creativecommons.org/licenses/by/3.0/comments and suggestions. I would really appreciate for improvement, additional Q&As, etc. Many thanks! Greg
Briefing No.1. Starting Dialysis – Everything you want to know
Big D and Me 
My husband started dialysis this week in the hospital. His fistula didn’t work and had to have a catheter put in his heart. It was a long week for him but he got through it. I need to know if anyone has suggestions on how he can shower with the catheter
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Greg – I’m one of those who went from feeling perfectly fine one day to zero renal function and dialysis the next. Your comment about double whammy certainly rings true. I was also entirely unprepared for several aspects of dialysis including:
Blood pressure drops, nausea and occasionally vomiting
Cramp in my legs
Machine alarms – for the first few weeks I always assumed something terrible was happening
Chills and shivers
The trauma of seeing what felt like lots of blood, and the psychological issues that can arise from being permanently, if intermittently, on life support.
Headaches and light sensitivity
I’m very happy to say that nearly all of these symptoms are either now very rare or much reduced, but it took me a year to really acclimatise, rather than weeks.
I can understand that it may be counter-productive to paint too bleak a picture of dialysis, but I would have been reassured to know that my symptoms and worries were very common and would probably pass in time.
Keep up the good work!
Chas . Collett
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Thanks Chas. I will certainly include your points in the next release.! 🙂
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Hi Greg,
Interesting topic it just so happens that I’ve been asked to talk at my center’s next Dialysis Education Day as a “successful” hemo patient. I do home hemo and have been for almost 12 months now while still working full time and playing with all the testing required for getting on the transplant list etc.
I’ve got some notes for the talk I’m happy to pass on to you that might help. A couple of quick things to add maybe, How important it is that you are part of the treatment to monitor yourself day to day to look for changes in blood pressure or fistula etc. Also (for home hemo) the training is very good the machines look complex but it’s easy after a while. Most important thing is to try and enjoy your time on the machine. Find something you like doing while you dialysis and it will help the time go quickly. Try reading, watch TV/DVD’s, do puzzles, surf the web, play computer games or sleep whatever works for you. Then you won’t mind doing the hours you need. Remember the more you dialysis the better you will feel.
Cheers
Mick
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Hi Mick, Thanks for this. Please forward the notes! I will certainly include them in the appropriate training module. The first couple have been fairly basic. The next one will be about the first two weeks, why BigD is not the end of the world, etc, then more detailed ones about specifics, like thriving on dialysis, diet, etc will follow after that, so I could definitely use your stuff. Talk soon! Greg.
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Hi Greg, I’ve attached my notes I use when I give my little talk on the Dialysis education days, they had one last week to a room full of people about 60 or 70 I’d say. I thought the talk went well and the feedback from the centre staff was it went over really well, there were heaps of questions and a lot of people were keen to see a fistula up close and the couple of brave ones that had a feel of the “Buzz” were impressed. I hope I was able to reduce any fears that they might have had, I still remember what it was like I was at one of those days a bit over 18 months ago.
I’d like to tell you how great you blog is it’s full of good information well done and please keep it up. The dialysis in China was an epic adventure I don’t think I could ever do anything like that but good on you for doing it I’m sure you inspired lots of people.
Your 2nd training module ” 2. Your First Dialysis Session – what to expect” is really good as well. I’ve passed both of those on to my Home Dialysis people and their feedback was very positive.
I’d like to ask a you a favour if I could ? I’d like your permission to write a guide based on yours but more focused on the first Home Hemo training Session. I’d include you as a info source and have a reference to your blog etc. I thought it would be only right to ask and if you agree it might be something you could use? Thanks again for the job your are doing you are making dialysis a lot easier for lots of people all over the world keep up the good work. Cheers Mick
Date: Fri, 22 Nov 2013 08:53:13 +0000
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Hi Mick. Thanks for your feedback (always welcome!). I would be delighted if you would like to rework my briefing sheets for home dialysis. The more we have, the better! I would love a copy too; it is an ideal topic for the Briefing series. I would certainly acknowledge you as the author. I am currently looking at converting them to ebook format (for iBook and Kindle) and having an easy-download area. More about that later. I look forward to hearing more from you! Regards, Greg
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