Greetings

[davecapper]

I am Dave Capper, as my username suggests. I am a caregiver to my Mother who is on dialysis and I am also a volunteer to others on dialysis.

I am a Patient Ambassador with Dialysis Patient Citizens, an organization that educates people on dialysis and those who write the legislation and control the purse strings to get them to cut them loose a little.

I have authored a few books (3 to date) about dialysis to help those on dialysis understand the disease, find sources of assistance and control their diet now that they are on dialysis. Help to understand dialysis and diet can make a big difference in the lives of those on dialysis.

I am an advocate for those on dialysis and the caregivers for them.

It is not an easy life, but it beats the alternative.

[YLGuy]

  Welcome Dave.  It sounds like you have a lot you could contribute to our community.  I am glad you joined IHD.

[boswife]

Welcome Dave....   I just went and checked out your 'holiday' book on amazon and it's looking like i'll be getting myself a christmas gift.  Looks great and i thank your for your caring for others on dialysis.. Again welcome and please join in..

[MooseMom]

What do you think is the most important thing a person should know before they start dialysis?

What is the most important bit of dietary advice you'd give to someone on dialysis?

Welcome to IHD.  Your knowledge will be greatly appreciated.  Can you tell us a bit more about your mom?

[lmunchkin]

Hello &   

lmunch
 

[willowtreewren]

Hi, Dave.

Welcome to IHD! It sounds like you will be a valuable member of this fantastic support group!

 

Aleta

[davecapper]

When asked about diet and dialysis, I tell people to eat in moderation. Holidays are difficult with so many goodies around but even then, if you taste a little of it all, you should do OK. Advice is to monitor sodium intake, phosphorus, potassium and fluids. It does not mean eating rice cakes and grass. It means being conscious of what you eat and how much. In my books I try to put things in about the dialysis, food and such and not just recipes.

My main concerns are sodium and potassium. While phosphorus is important, there are binders to take care of some of that, though I never recommend someone go overboard on eating whatever they want and not monitor their intake. Remember what goes in, must come out. What is not useful must be disposed of. This is true of dialysis. When you are on the dialysis machine, it is to remove excess fluid and wastes that are not excreted through the normal process. if you eat too much, you have to wait until treatment to remove those things. Eating a lot of those things may mean several treatments to remove all of the bad things you ate too much of.

In a nutshell, learn the foods and the nutrients in those foods. Then monitor what you eat each day so you know how much potassium or phosphorus or sodium you are eating.

It is not easy, but one can learn what foods are high in those things and avoid them or limit them. In my writings, I have learned seafood is almost always high in sodium as it is lived in salt water. Chicken and eggs are a good source of protein, but egg yellows should be limited as that is all cholesterol. The protein is the white in the eggs.

I could write a whole book here, but I will stop for now. Feel free to ask questions and I will do my best to answer them. Always but always check with your dietitian and medical pros about what is best for you. I can not tell a person what they should eat or not eat if I do not know their blood work results, but I can say generally to eat in moderation.

Thanks for welcoming me and I look forward to helping as many as I can with their questions.

Dave

[davecapper]

Moose Mom, thanks for asking about my Mom. She will be 80 next month. She started dialysis in 2009, after struggling with failing kidneys for a number of years. It was a huge change for us both as I quit working and take care of her 24/7. The doctor was upfront, which is the way I prefer it, when he said someone her age and on dialysis, had a poor prognosis. In the first year, he said, 50% of those her age starting dialysis will not survive the year. She has survived longer than that, obviously and while not every day is a good day, it is a day above ground, as she says.

We, like so many people did not know what to expect or what was happening, and my Mom was a registered nurse for 45 years. That is the reason I was adamant about finding the answers and sharing them with other confused patients. I wrote the books to help those who needed the information I was able to learn over the process of her being on dialysis. I hope they help a lot of people.

I will answer any questions I can and while I am not a dietitian, nephrologist or nurse, I know some things from experience that I am willing to share and will always advise people to check with those who know more than I and those who have access to their medical records if they are seeking medical advice.

Thanks for asking about her.

Dave

[Rerun]

Hi Dave, how nice of you to take so much time to write about and care about people on dialysis.  You are not on dialysis?  Am I correct?  I do appreciate your effort.  Not to be nasty but I have to say this:  YOU ARE NOT HAVING TO  (oops sorry) you are not having to restrict your fluid or food.  So you don't really know.  That would or is like me telling obese people how to diet and exercise.  I'm not fat so I don't know the struggles they go through.

How about when the needles hurt all night.  How about when you have so much fluid on you can't breath.  Do you think I want to hear again and again to restrict my salt and not drink water?  NO, I want to hear, "yeah, that sucks we just have to try harder." 

OK, Thank you for letting me say my piece.  Again, it would be nice to have someone around who knew what I was and was not supposed to eat.  Although my sister will say "I thought you weren't supposed to eat chocolate" and I want to deck her.

Really, welcome to this community.... just don't be telling me what to do.   

Rerun, Moderator           

[davecapper]

Rerun:

No I am not on dialysis and I do not mean to preach to the choir about diet. I live with someone who is, which makes me live the same life. When I get woke up because they cannot breath and need oxygen or cramping or whatever the complication is that time, I look back and realize that most times it is diet related. When my own Mother drinks like a fish, she has problems. When she retains too much fluid, they have to take that off at dialysis, and as such, it means days of treatments to get her back to normal levels.

We love to eat, let's face it. But you MUST limit what and how much or you will continue to have problems. It is not easy, but it is what you must do when on dialysis. I do not like people telling me to lose weight, though I am not obese. No one wants to hear something they already know when they are struggling to do what they need to do, but you have to work at it and sooner or later, you will get there. NEVER GIVE UP!!!

I appreciate your comments and wish you well. I do not tell people not to eat what they want but I do tell them to do so in moderation. The excess fluid buildup would cause a problem with breathing and can cause congestive heart failure. Dialysis will remove a certain amount of fluids with each treatment but it cannot remove them all if you, as the patient, do not control fluid intake. Reducing the fluids over a period of time, and those breathing problems will likely clear up because the dialysis treatment can keep up with the fluids you are drinking. It is not an overnight solution if you are drinking as much as you like, but it will reduce those problems over several treatments.

Dialysis can only do so much and the patient has to take care in what they eat and drink to stay within the limits of what the machine can do for them.

You can vent on me any time. I understand it is frustrating and seems to not work as well as a patient may like it to, but if you reduce intake it makes the machine work better for you. Think about it this way, a nephrologist should tell you they cannot remove more than 4kg per treatment. If you drink as much as you did prior to dialysis, the machine will not be able to keep up, fluids will build up, toxins will build up and WHAM you have complications. Reducing fluid means the machine can remove the excess fluids in one treatment and your problems should go away. That sounds simple and it is in theory, but in life things are seldom as easy as seeing it on paper.

May I suggest something here... instead of drinking a glass of water, try a hard candy, sugar free if you are diabetic. This will quench your thirst and not add to fluid intake. It is not easy, but as my Mom would tell you, I DO live the dialysis life. Any caregiver who is there 24/7 does know what it is all about. When she has complications, we can always pin point the problem to something she did or did not do.

I wish you well, and I am here if anyone wants to vent or has questions. Any time you need to vent, let it rip, I will help you through this.

Dave

[davecapper]

Rerun, I would not tell you not to eat something you wanted. It is ultimately your choice but I will give you the information you need to make decisions. I am not a strict diet follower. I think you can eat most things just not in large quantities like you may have done before. And no I do not mean buffets where they have to ask you to leave before they go broke ha ha. If you want something, I say to have it and balance it out some place else, but not to overdo it and be miserable for it.

Enjoy life, but with that comes eating right so you can limit the bad times you are experiencing. Not easy always, but it is what it is.

As for needles hurting all night, I assume you are on nocturnal and I have no experience with that though my Mom uses a cream that numbs the area. Ask at the dialysis clinic about it. I personally have always heard that if there is pain, it is your body telling you something is not right. I am not sure if the cream she uses would help you but it is available if it does. Some use it and others tell me they do not need it. If you do, and it is an option try it and see if it works.

Hope you are well
Dave

[Ang]

 

[davecapper]

Thanks Ang... Hope you are well today.