Some Dialysis questions?

[Chrissygled]

Hello, I just joined this group and have a lot of questions. Thank you for taking the time to read this! I will be getting a temporary catheter and a fistula next week.
I will have my kidney removed, due to cancer,on April 12 and start dialysis after that. First question... are all fistulas raised? like a rope or snake under your skin? I saw a picture of one that was just a little line... is this wishful thinking?
Next, whats the real story on diet? I have heard everything from straight vegan to small changes. Is it a difficult diet regimen?
Third?  ...water? really one liter a day of liquids? Oh my goodness, I drink that much in coffee!
how does one deal with this?
Lastly, I hear that people lose weight on dialysis, but then I have also heard of people gaining? what have you experienced... I am average weight now, but have always struggled, and sure that should be the least of my worries, but I am freaking out!
I know that it is different for everyone, and I will learn a lot more from my Nephrologist, but sadly I wont see her until I am in the hospital. Any thoughts you can give me on any of these questions would be greatly appreciated.
Many thanks,
Chrissy

[MooseMom]

Hello, Chrissy.  I am not yet on dialysis, but I've been around long enough to start guiding you to the answers to some of your questions.

A lot of those answers depend on what kind of dialysis you do.  If you do nocturnal hemodialysis, for instance, especially if you do it at home, you will be getting dialysis more often, for a longer period of time and at a slower rate, all of which more closely mimicks the function of normal kidneys.  As a result, the dietary and fluid restrictions will be far less onerous than those experience by people who do their dialyisis in a more conventional way, ie inclinic x 3weekly. 

Nocturnal hemodialysis also will allow you to run at slower speeds, and this will decrease the pressure on your fistula, and that means that it will be much smaller than that of someone on conventional hemodialysis.  I've seen a fistula of someone on inclinic D versus a fistula of someone on nocturnal home hemo, and the difference is rather astonishing.

As for weight gain, I guess a lot depends on your activity level and your appetite.  If you feel unwell while on D and you don't eat much, I guess you'd probably lose weight.  If your appetite is OK but you are not moving about very much, you may gain.  Then again, if good dialysis restores your energy level and you are not anemic, then you'll have more energy to exercise, and you may lose weight.

Yes, it is different for everyone.  But there is a lot of information here on IHD since most people have had the same types of questions, so I'd encourage you to keep reading and keep asking questions.

[Cordelia]

Hi Chrissygled,

Welcome here     

Yes, everyone will be different.  I can only tell you my experience and that was that I lost a lot of weight. Since I started D in Aug of 2010, I've lost 73 pounds. No, it has not been easy. I cut out a lot of the dairy foods, like milk and cheese and cut out all soda and potatoes too. I eat a lot of fresh foods. Processed foods are not good for people on D.

I've had to watch my phosphate intake so a lot of dairy has that unfortunately. Eating low sodium foods is better.  Post D, its a high protein diet.

My fistula is barely noticeable as far as the track is concerned. The bruising and the needle marks are unnerving though, I must admit and takes a little getting used to.  Some Extended family teases me about the needle marks, which ain't pleasant.     

As fas as water is concerned, I'm not on any fluid restrictions but I do watch my intake. I don't eat much soup. The fluids I get is mainy water since I don't drink milk anymore on the special renal diet.  To me, the fluid topic for me personally is just common sense. I drink a certain amount in the day and don't go over it. I am strict with that on myself. 
Higher sodium foods you eat you may find you retain the fluid and can make you heavier going into dialysis if not careful.

If you've got a poor appetite now, you'll find once you start D, your appetite will likely improve. I know mine did. Suddenly, food tasted so much better. Renal failure does something strange to the taste buds, I must admit!

[lmunchkin]

Hi & Welcome Chrissy!  You will find lots of helpful people here.  Can I ask you a question?  Are they removing Both kidney's?  So sorry cancer is the culprit.

Ask any thing you like, someone will have an answer!

Again Welcome & God Bless,
lmunchkin
 

[Traveller1947]

Hi, Crissygled, and welcome!    This is a great place for questions, because, collectively, the good people here have a LOT of experience.  Some fistulas become very prominent over time, others less so.  The renal diet is not so tough if you think positive.   The main things you need to control are phosphorus, potassium and sodium.  The dietician will give you a list of foods that are high in these elements--those are the foods you want to limit or avoid.  There will still be plenty of delicious choices for you.  The renal diet is also high protein and this should be in the form of high-quality protein such as eggs, fish, beef, pork, lamb, chicken, etc., not beans or nuts or dairy products.  As to the fluid restriction, that depends on whether you're still producing urine and also on the kind of dialysis you choose.  But, yes, one litre a day is about right if you're not producing urine.  Weight loss or gain?  I do in-center hemodialysis and I've never known anyone who gained weight on dialysis there.  Many people lose weight in the beginning, some very large amounts, because of the fluid that built up before they started dialysis.  How do we deal with this?  As well as we can, with the help of our loved ones  and our friends here, one day at a time.  And you will too!

[Chrissygled]

Thank you all so much for your help, I really appreciate it. To lmunchkin,  I had one kidney mostly removed in December,  there is a tiny piece left   and on the twelfth they are going to take the right one. The dr is going to try to save it, but he says, as do three other drs, it looks like the whole thing will be removed...
Again, I just appreciate all the help so very much!

[Riverwhispering]

Hi Chrissy,

I'm very close to being on dialysis so the only thing I can answer is the fistula question as far as mine.  The vain had to be raised closer to the surface because it was too deep in my arm so I can more feel the vain more then see it.  The fistula itself is kinda fun to freak people out with.  If you have someone place their hand where the fistula is they usually freak out because it feels like a bee or fly is in there trying to get out or kinda like the feel of a cat purring.  If you can get it close to your ear you can hear a swoosh type sound as the blood flows.  They tried to do one just above my wrist but it didn't work so the second one is at the inside bend of my arm and it's very strong.  Instead of freaking out about it think of it as a lifeline and treasure it.

[malaka]

I started in center hemodialysis January 13 and have survived so far.  Weight loss has been approximately 35 pounds, most of which happened so quickly that it was water.  My stamina has improved without all that fluid build up.  They try to figure out some estimate called "dry weight" which is your theoritical weight without excess fluid.  Dialysis tries to get you to your dry weight.  They'll know if you've been drinkiing too much or eating too much salt as you gain too much weight between sessions.

Fistula is no big deal, but your's probably won't be "mature" between now and April 12.  I hope you like squeezing rubber balls, as that's the exercise you'll have to do.  The best description is that it looks like a single varicose vein on some grandma's leg, but not purplish.

Suggestion:  if you're going to do dialysis in center, get yourself an e-reader of some sort to help pass the hours.  While I've learned to nap despite the warning beepers going off frequently, T.V. is a very boring alternative to an e-reader.  For some reason, my center isn't hooked up the the internet for patients, so I download books and some music.  Also, if no blanket is provided, bring one as I am now "cold".  It may be anemia, but I'm not sure.  Blanket and warm socks help a lot.   BTW, the e-reader is recommended as you have effectively one arm only while undergoing dialysis, so reading a real book can be difficult.

Diet is strange, to say the least.  I'm supposed to be limited to 40 oz of fluid per day.  I cheat, but I have retained some urinary function.
Food, on the other hand, is straight from Bizzaroland.  Things that were "good for you" all you life are now bad.  Included in "bad" are oranges and orange juice, tomatoes and tomato products like sauces, beans of all sorts, winter squashes although most summer squashes are just fine, artichokes, nuts and peanuts, potatoes unless you soak them for hours and hours, whole wheat bread, bran cereal,  brussel sprouts,  cheese, milk and other dairy products. You get a long list, much longer than this.   Something called starfruit is supposed to be the worst of all.  The worry is sodium, potassium, and phosphorus.  A problem is that most protein foods have one or more of these, yet you have to eat protein. Not sure you'd get enought protein on a straight vegan diet.   Dark sodas, except root beer, are bad.  Light-colored ones are generally just fine.  Beer is bad.  In short, given the diet restrictions, you'd probably lose weight any way.  I have.

One more point.  At first, I was wiped out ppost-dialysis but I've felt better after each session as I've adapted to the process.  Losing fluid and electrolytes does take its toll, but I'm feeling better and better.

[MomoMcSleepy]

Hi Chrissy,

Instead of freaking out about it think of it as a lifeline and treasure it.

that's a nice thought, good advice Riverwhispering!

[Gandalf]

Hi Chrissy, and welcome here - this community have been so enormously helpful to me, and to so very many others; i am sure it will become an amazing source of support and information in your life.
Re some of your questions, as the other posts have said, it is all quite variable, dependent on your state of wellness and the type of dialysis you do, amongst others.  I do in-centre hemodialysis (we don't have home HD options here), and it does seem that weight loss is more common than weight gain. 
My fistula is really quite pronounced, and does stick up, but I have a truly skinny arms so I guess that is inevitable.  It does cause some stares and questions - but hey, I use it to tell people about kidney disease, and it has been a good way of connecting with relative strangers, who are only curious and not necessarily cruel....
I think for me, the fears about dialysis before the time were far worse that the process turned out to be - the biggest issue is the boredom and the time - reading on an I-Pad or something does help, but it is a lot of time, one way or the other.
The food restrictions are a pain, but one does get used to them (sort of!!)
Wishing you well and keeping you in my thoughts
P

[Chrissygled]

Thank you all so much for your thoughts, advice and kind words of inspiration! I really appreciate it all,
Chrissy