Starting a dialysis-diary ?

[kristina]

Hello,
I was wondering if anybody keeps a dialysis-diary,
in which they record their weight before each dialysis-session and their weight after each dialysis-session,
their in-take of food & liquid each day and their off-take of liquid at their subsequent dialysis-session,
which brand of Epo they are given on which sessions etc.?
I was wondering about all that because being a "newbie" to all this,
I thought it might be a good idea to get a better "insight" into how everything works
and with that bit of insight I might first of all get a better relationship to dialysis
and secondly be a little better equiped how to deal with everything?
What do you think?
Thanks from Kristina.

[cassandra]

I think you should do what you think is best for you. I remember having a diary like that when I was on D in the 80's when the dietit was way more strict, but the diary did work. I also filled in the amount of K+, and protein from everything I ate. Very time consuming in the beginning, but 30 years later I still know nearly all the values of what I eat.

Only when I started my home hemo diary did I start writing down how I felt after each session (depending on pumpspeed, or loss of blood through a mishap or something) I wish I had done that while on in-centre.

Good luck, and love, Cas

[kristina]

Thank you for your kind thoughts Cassandra,
Because of my fragile kidney function after my kidneys first failed in 1971, I started at the time to write down facts about food and liquids,
what to avoid and what every vegetable/fruit/liquid such as coffee/chamomile tea and different foods contain
and how much of it I could eat or drink of it, what might be risky to eat or drink and why etc.
After a while I knew most of it by heart, without having to look at these papers...
... but now and again I looked at the papers and compared them to my cooking all the same to make sure no "artistic licence" was "creeping in".
... Because of my very good experiences with this kind of "system" (which served me extremely well over many years),
I thought it might be a good idea to develop a better knowledge about everything to do with my dialysis-sessions
and my vegetarian diet and how to combine a harmony between my veggie-diet and dialysis etc.
The only way I could think of would be a diary, because it can report definite good results
and defitine bad results and why, what to avoid to drink/eat and where to work out and research more about the details etc.
I am sure that such a diary might not make much sense right now at the very start of my dialysis-sessions,
but my hope is, that in the long run it might give me a better insight and a clearer understanding about dialysis...
Of course, my husband and I are getting prepared for my kidney-transplant in the very near future,
but I can't imagine that a diary would be a mistake
even if everything goes perfectly well with my kidney-transplant,
because no one knows what's in the future ...
Thanks again from Kristina.

[iolaire]

I think it could be very helpful.  Sometimes I find myself with say 2 kg to take off, but then other times, say after Christmas when you would think my food and liquid weight would be high, my weight is low and its only 0.4 kg to take off.  Having documentation might help figure out what drove the weight gain.

[Jean]

Absolutely Kristina. You may think you remember every little thing, but as humans, we forget.

[JW77]

I keep my obs sheet for home heamo which records the gain etc etc at each session. Also use it to note IV iron given, and EPO.

Sometimes if I'm struggling with fluid, or my figures are out, I'll keep a food and drink diary for a week to see if I can pinpoint the the issue.

Also good to keep a record when your new to show to a dietician, as they may be able to point out something you didn't realise was not ideal on dialysis:)

When I was transplanted, I had a drug book /drug chart, as the medications need to be taken regularly and never forgotten.  Also useful for taking into clinic:)

[kristina]

Thank you very much for your kind encouragement, iolaire and Jean and JW77, it is very much appreciated.
I have already noticed how helpful such a diary can be, because, for example, I have started to record and write down
my weight every morning in the diary. Hopefully this might give  - in the long run -  a much better idea about my remaining kidney-function
from day-to-day whilst on dialysis ...  and it also might assist the nurses to "guesstimate" my water-retention easier... 
...and in time it also might give a better idea about the trend of my remaining kidney-function ... 
I have also started to observe and write down in the diary my water-input and my water-output on certain days and record my findings  ...
... At least this diary might give me a better chance to "take an active part" in my ESRF-treatment by working together with the nurses
and the doctors and record my own findings and write them down in the diary...
... At first I was a little concerned that such a diary might get me overly "busily" involved,  but I have already noticed
that it actually helps me a lot to calm down about my situation and by recording and writing down important facts myself,
I don't have to concern or stress myself about memorizing too much all the important facts, whenever I see a medic,
because all my own findings are already written down in the diary... and then it is for the medics to decide,
which facts are really essential and which facts might not be so significant...
Thanks again from Kristina.

[iolaire]

I have also started to observe and write down in the diary my water-input and my water-output on certain days and record my findings  ...

I've not done it but I think it would be helpful to have real measurements of water-output.  I feel like I have less volume but I still go all the time and its hard to gauge.  It would be nice to have some stats of a normal day's output to compare every few months or so.

[kristina]

Thank you iolaire,
I had similar thoughts and to record facts in the diary would hardly take any of my time
but it could perhaps bring good rewards in the long run, because it could be helpful
to show some real measurements of my water-input and water-output at certain times.
It could also show some other observations, which can be easily recorded in the diary
and adding to this, the diary could be very helpful when it is beeing looked at by medics,
whenever I consult with them ...

Thanks again from Kristina.

[kitkatz]

I wish I had kept one since day one of dialysis. It might help you to pick up on problems before they become serious problems.  I say go for it.
Ask for your dialysis prescription to put in the notebook first thing.  I have put a prescription form attached to this that some one developed.

[kristina]

Thank you very much kitkatz for your kind encouragement
and I also appreciate very much your showing your dialysis-prescription.
This dialysis-prescription is a very,very clever idea and having it "handy" at all times might assist
to prevent dialysis-incidents, because the nurses at a centre might not be as permanent
as we are with our regular dialysis-sessions.
Thank you very much again from Kristina.

[kitkatz]

Oops I meant to post the blank prescription form not my personal info so I changed it to a blank one.

[kristina]

Thank you very much for all your kind replies.

... I have been using my dialysis-diary every day since starting with dialysis,
which has been over two months ago and the diary "works" very well for me !
... It has helped me a lot to come to terms with my dialysis-sessions and it has also helped me to learn from the nurses
and write down what I learn in my diary. The diary has also assisted by me writing down my weight every morning,
which has helped enormously to keep an eye on my weight-increase between dialysis-sessions,
which again has been vital to figure out my dry weight more accurately without any guessing...
The diary has also helped me to keep a positive outlook on my dialysis-sessions and work together with the nurses as a team ...
... Of course, I am not "in charge", but I am taking a very practical part in my well-being and in the whole process of my dialysis-sessions...
... I am also getting the "jist" of what is going on and my diary assists to keep an eye on "things", before unwanted "trends" could develop...
The diary has also helped me to get a "relationship" with my dialysis-sessions
and this "relationship" helps, that my dialysis-sessions don't get that much of a chance to distress me...
and the diary has also assisted to prevent me from feeling like a "victim of kidney failure", because I am really taking a very active part
in my "body and soul" survival despite dialysis ...
All in all, the diairy has been a very helpful exercise for me and I am very glad that I started with it ...
I find the whole exercise quite amazing, because it also helps to keep "my" dialysis-sessions on a more practical level...
..without giving the emotional part of it too much of a chance to overtake  ...

[PrimeTimer]

kristina, I think it's great that you are taking charge by keeping a dialysis diary and learning all you can about living with dialysis. I think keeping a Dialysis Diary is very important. My husband does home-hemo. In addition to the treatment logs that we are required to complete for each session, I also keep a journal noting anything out of the ordinary...how certain UF and/or volume rates and blood flow speeds on the machine affect him or anything that went wrong during treatment or even something new I've learned how to do to improve things. And keeping a diary or journal may come in handy to medical staff if you are ever hospitalized. Kudos to you for being an "active participant" in your own healthcare! 

[kristina]

Thank you PrimeTimer,
I am very happy for you both, that your own diary assists you a lot as well...
... My dialysis-diary helps me to take a lot of the dialysis-stress away,
it also assists my husband and me to learn the routine of "dialysis-things" and we have noticed,
that being more relaxed about dialysis is half of the battle "done"  ...
We just hope it continues like that...
Best wishes and thanks again from Kristina.