What are the most important things a new dialysis patient should know?

[Robert0502]

My husband just recently began dialysis 3 weeks ago via an ash cath, he's waiting for his fistual to mature.

[Southpaw]

I'm in the same boat. I'm waiting for my fistula to mature and if my blood work gets any worse my Dr. is going to put a cath in me and start dialysis.
How long has he had his fistula?

[jbeany]

Most important...

There are multiple kinds of D.  Many centers don't tell people this - they just send them off to in-center hemo without discussing options.  Make sure you understand the pros and cons of all the options - PD, both manual and with the machine, in-center, home hemo, and nocturnal.

Learn what the labs mean and demand to be given the real results.  "Your phos is a bit high."  and "Your potassium is okay."  don't tell you a darn thing.  The Kidney School website is a great resource for this.  You can track your own trends up and down, and know if it's okay to have a bit extra of something you love on the diet.

Don't attempt to get the diet down perfectly from day one.  It's a hard process to adjust to the food and fluid restrictions.  Don't beat yourself up for not getting it right immediately.  Slightly elevated levels aren't good for you, but if you are close to normal, work on it as you can. 

The first month or two is the toughest.  It does get easier for most people.

Dry weight is just a guess.  They don't have any real idea what you weigh.  And even though they want you to leave weighing the same thing after every session, it's not realistic.  No one weighs the same thing to the ounce every day.  What and how much you ate, what you are wearing - these things vary.

You can set your own fluid removal goals.  If you know you have on heavier clothes than normal, then you can set the goal for less.  (For younger women, this is a huge issue at "that time of the month".  Some fluid can't be removed on the machine!) 

Most important of all - do not fall into the cookie cutter.  The docs and nurses often want to run the D center like a production line - the same treatment for every patient, regardless of how well it works for the individual.  Any sentence coming out of their mouth that begins, "ALL dialysis patients...." is sure to contain some amount of BS. 

Figure out what works for you.  If your kidneys are still clearing fluid, then you don't have to restrict fluid as much.  If your kidneys are still dealing with potassium and phos, then you don't have to restrict your diet as much.   Learn as much as you can so you can control your own treatment. 

[malaka]

I've learned to control my drinking, er, fluid intake.  Why?  The more they remove during dialysis, the worse I feel afterwards.  Usually.  So, even though I still pee (probably thanks to Lasix) I've learned that I need to control the fluid input to prevent excess weight gain. 

I also learned to read with my Kindle which I can use with one hand.  Dialysis is boring.  Reading helps me pass the time.  Daytime TV really sucks.

Study the diet books you no doubt got.  The collection of what isn't to be eaten and what's o.k. is far from intuitive.  Summer squash good, winter squash forbidden, for example.  OJ very bad, grape jice o.k.  You need to know and remember this stuff.
Starfruit (whatever that is) equals horrible.  Avocados bad.  Potatoes very bad.  The list goes on and on. 

[mamagemini]

So I start dialysis this week. I have not had a problem in over a year with my potassium, thanks to Lasix. My protein has alwyas just peed out or lately went into my skin. I'm sure they will tell me about this. My sodium levels too have been okay so I should ask to stay the same?

[jbeany]

So I start dialysis this week. I have not had a problem in over a year with my potassium, thanks to Lasix. My protein has alwyas just peed out or lately went into my skin. I'm sure they will tell me about this. My sodium levels too have been okay so I should ask to stay the same?

Same in what way?  Your dry weight?  They are going to try to take off more at the beginning, even if you think you haven't got any fluid build-up.  I swore I didn't, but I did- it had just came on so gradually that I thought my fluid retention was normal.  After the first couple of weeks, so much hidden fluid had come off my legs that my skin felt loose.

[Grumpy-1]

Jbeany gave you a bunch of good advice.  Look into all the options for D.  Feel free to ask here about them as well.  Some work better for some than others.  She also said to get the lab numbers and keep them.  You can follow a trend buy reviewing each month.  Then adjusting your food and drink to better the next month's numbers. Also, you can read about and questions about other folks and their ordeals.  How we are all coping, the ups and downs - the success and failures.  Someone here has experienced everything you will go through.  Use us as a help and information.  Then be a comfort and a guide to someone else.

Grumpy   

[M3Riddler]

My husband just recently began dialysis 3 weeks ago via an ash cath, he's waiting for his fistual to mature.

Robert,

Great question..... I would suggest to educate yourself as much as possible. Dont leave it up to the medical team to tell you something...  Do not be afraid to ask questions nor question anything your nephrologist or medical team say or do.  This is your right.  I find that the more education about your disease you have, the more the docs will openly tell you.   Ask about different options.... If interested, ask about home dialysis, even though they should have discussed this with you per law of informed consent.           
 
Take part in as much as your treatment as you can...
Learn what your lab values mean and what they affect in the body. 
Learn about dry weight and fluid balance and how much fluid the bloodstream can hold while dialyzing. 
Educate yourself on what high blood flows can do long term to your heart/fistula.
Educate yourself on how longer/slower dialysis is better for you long term
Educate yourself on what high phosphorus levels will do to your bones
Learn how much phosphorus is removed during a standard in-center treatment and how there is most likely a net build up of phosphorus over time that can lead to bone damage.

Get involved as much as you can.
I could keep going.....   Education is key.....

///M3Riddler

[iKAZ3D]

Best Advice Ever: GET OUT WHILE YOU CAN! 

[YLGuy]

Similar topic:

http://ihatedialysis.com/forum/index.php?topic=14194.msg247383#msg247383

[Angiepkd]

All the advice given has been right on target.  I would add that along with the medical things, be prepared for some mental ups and downs.  Sometimes things can seem overwhelming, and there are bound to be some bumps in the road you didn't see coming.  I am a little OCD, so I take the diet and fluid restrictions a little too seriously sometimes.  Trips to the access center are inevitable with a fistula.  Don't let it get you down.  Expect some days where you question why this has to be happening to you.  Even with the negatives of D, I still feel so much better than the months before I started!  Most days I am grateful that I can continue my life with little trouble from D.  Just remember that no modality is perfect, and there are going to be some rough days!  Use this site to vent and get it off your chest.  It helps a lot!  Then start fresh with a new outlook.  Like Dory from "Finding Nemo" says - Just keep swimming! Just keep swimming!  Best of luck to you!

[YLGuy]

My husband just recently began dialysis 3 weeks ago via an ash cath, he's waiting for his fistual to mature.

Robert,

Great question..... I would suggest to educate yourself as much as possible. Dont leave it up to the medical team to tell you something...  Do not be afraid to ask questions nor question anything your nephrologist or medical team say or do.  This is your right.  I find that the more education about your disease you have, the more the docs will openly tell you.   Ask about different options.... If interested, ask about home dialysis, even though they should have discussed this with you per law of informed consent.           
 
Take part in as much as your treatment as you can...
Learn what your lab values mean and what they affect in the body. 
Learn about dry weight and fluid balance and how much fluid the bloodstream can hold while dialyzing. 
Educate yourself on what high blood flows can do long term to your heart/fistula.
Educate yourself on how longer/slower dialysis is better for you long term
Educate yourself on what high phosphorus levels will do to your bones
Learn how much phosphorus is removed during a standard in-center treatment and how there is most likely a net build up of phosphorus over time that can lead to bone damage.

Get involved as much as you can.
I could keep going.....   Education is key.....

///M3Riddler

To add to this.  I think belonging to a forum like this is one of the most important things you can do.  I absolutely think that because I have come to IHD since my kidneys failed that the quality of life is so much better than if I did not.  I also believe that I think my chances of surviving ESRD are much better.  I have received excellent information here that I do not think I would ever get talking to a tech, nurse or even my Nephrologist (who I love!).  I have received support like you cannot imagine.  Really, this is a VERY caring group.   

Now the down side to belonging to a forum like this.  ESRD is an ugly disease.  It takes people's lives.  Unfortunately people pass.  People you consider friends.  You will find yourself sitting in front of your computer with tears streaming down your face for a person that you have never met.  A person that you have never even heard their voice.  We recently lost a Moderator, Bajanne.  You couldn't find a nicer sweeter, caring woman.  It was so very sad to hear of her passing.  You find yourself upset about the losses and suffering other members are going through.  It still saddens me to no end thinking about Paris losing her husband.

Is it worth it? With out a doubt.  I am truly honored to know some of the people here at IHD.  My life is absolutely better because I belong to this forum. 

[graciekycats]

Amen YLGuy!

[iolaire]

My husband just recently began dialysis 3 weeks ago via an ash cath, he's waiting for his fistual to mature.

One point I'd like to make is that dialysis is a lifestyle, so do your best to accept that lifestyle and try to minimize its affect on your life.  Some things to make that easier is to be a compliant patient, update your diet to minimize imbalances in your body, but more so don't let dialysis rule your life, in reality its under 18 hours a week + plus some recovery time afterwards, so that leaves many more hours to do what you did pre-dialysis.  In my case I appreciate that I'm still able to work and travel.   My wife and I have given up evening activities on dialysis days (or she still participates before I get out of dialysis).

Personally I function poorly at work after dialysis so I appreciate my 3-7 shift which allows me to sleep afterwards.  That allows dialysis to really be 4 hours three times per week plus a night of sleep which just cuts short some evening social time on those days.  I don't know how it works for people on morning shifts, but I wonder if they are not more impacted because they are drained at the beginning of the day and loose more of a full day.  I will say when I do a morning session well traveling I'm drained but still able to be out and about, so the impact might have I have to do (i.e. work versus sightsee).

[Simon Dog]

Most importantly, find a nephrologist who fits your "style".   If you want to be heavily involved in your treatment, find a neph who respect this rather than considers you a pest.   Decide if things like direct email access to the MD are important, and if you prefer detailed medical answers or just instructions.   Some people don't want to be bothered with the details, whereas others like it when the MD forwards them the latest research papers supporting his/her decisions.     You will be relying on your nephrologist for the duration of your dialysis ordeal, so don't just accept the first one you encounter unless it is a good match.   There are bad patient/nephrologist matches just like there are bad kidney matches.

Treat the first meeting with your nephrologist as an interview - you are trying to figure out if (s)he is the right doctor for you, and you should similarly give the doc a chance to let you know if you are not the right kind of patient for him/her.   The first thing I said at the initial appointment with my neph (pre-dialysis) was "I need to know if you will help me get home treatment, so I don't waste your time of mine if you won't help me reach that goal."

[kristina]

For us (my husband and I) the most important point from the start was, to make absolutely sure to know beforehand,
what to do during the four hours, to make absolutely sure that the four hours have no chance  to become too long...
... or too boring... or to exhausting... and there are many different possibilities to make the dialysis-time run quickly,
like reading an interesting book or a biography, or do some research and bring all the necessary papers and books to do that ..
... or once a week, when the special crossword-magazines have arrived, do the crosswords, get the crossword-results and hope to win a price...,
... (crosswords-puzzles are also a good exercise for the grey cells... and some of the prices offered for results are very encouraging...) ...
... And whilst keeping busy during the four hours, the dialysis-time can run very quickly ...
We also are very lucky in "our" center, that a very kind nurse comes along during every dialysis-session to offer sandwiches and tea or coffee...
(her wonderful egg-majonaise-sandwiches are a very much appreciated treat halfway through every dialysis-session...)
... All in all it is not too bad... Of course, everyone on dialysis could certainly do without any dialysis-sessions, given half a chance,
but as things are, we can't change anything about it and so it is best to try to make the very best of it...
Best of luck to everyone from Kristina.

[graciekycats]

Well the VA has approved my starting Dialysis tomorrow April 2nd.  Oh boy, now the adventure begins. Nervous about the large needles and sitting for 4 hours. But I have faith. 

[kristina]

Hello gracie,
I wish you all the best and send you my good luck wishes for tomorrow,
Kristina.   

[Michael Murphy]

This is my second anniversary of being on Dialysis and looking back on dialysis I have learned several rules. 
1.  If you can sleep through part of dialysis it goes by quicker. 
2.  Ware similar clothes  gains in wieght are punished  by more water being removed.
3.  Keep firmly in mind dialysis is a small part of your life I spend about 18 hours a week in dialysis that leaves me 150 hours a week for a life.
4.  If you are fluid restricted follow the restrictions water gains can kill you.
5.  The first session is the worst you will ever have.
6.  The most important person on your team is you, be involved in your treatment.
7.  If you are a early person bring something to do,  I am a four hour treatment and there is nothing I want to watch on tv at 6:00 AM

[bliss85]

Well the VA has approved my starting Dialysis tomorrow April 2nd.  Oh boy, now the adventure begins. Nervous about the large needles and sitting for 4 hours. But I have faith. 

Dont worry i was really worried when i started too and actually waited 8 weeks after my fistula was matured until i tried using needles out of fear....but i hated the catheter so much i had to get it out...they start with small gauge needles and for me honestly it hurts for about 10 seconds and thats it...once its in its fine...also look into "button hole" its another option for people with fistulas i personally opted not to try it...but i have been told and read in these forums from others it really cuts down on pain.

[kristina]

... I have recently talked to a doctor and they told me that starting with dialysis is a shock to the body-system
and because of that it becomes important that the patients try to be as kind as possible to their own body-system ...
...no physical or emotional strain, no trying hard to "keep up", but instead lots of rest and an easy digestable diet
to give our body a good chance to adjust to the new 3-times-a week-treatment-discipline ...
Best wishes from Kristina.