Neat Phosphorus tool

As you know, with kidney failure you need to watch your phosphorus intake.  Each patient's amount will vary, so ask your doctor how much you can have daily.  Then use this website to find out how much phosphorus is in over 7000 foods!

So many things....

I'm sorry I haven't posted.  I have learned so many things over the past several weeks, but I have been trying to decide how to present them to all of you.  We went to a transplant class and found it to be a very emotional experience.  I think I will share everything we learned in small pieces.

Did you know that you can ask to attend a transplant overview "class" even if you aren't ready for a transplant?  We are glad we went even though it was very overwhelming.  Hubby is ready for a transplant, but doesn't qualify at this time, because of his weight.  Every transplant program has different guidelines for weight, health, and other criteria.

Did you know you can get on the transplant list at more than one hospital?  We learned that it is good to check out other hospitals and get yourself on a few lists.  It is a complex system for deciding who can get a kidney.  We also found out that this is a very heartbreaking process.  When a kidney is available the top people are called, but only one of those people actually get the kidney.  But that means the others called still have to be ready just in case it is them.  One man, at the hospital we took the class at, has been called and ready to go 9 times... he is still waiting for his kidney.

I realize this post is short, but emotionally I think that is enough for one day.  I don't want my posts to be negative or emotionally hard to read, but I want to share what we are learning as we go through this process.  I hope you have support to get through this hard time.

Breakfast Burrito - Low Phosphorous - PD friendly!

I'm trying to vary what my husband takes to work for his lunch, so today I made him some Breakfast Burritos.

Breakfast Burritos - PD Friendly

1 pound ground pork
1/4 teaspoon cayenne pepper
1 teaspoon ground sage
2 tablespoons of water

Mix those 4 ingredients together and refrigerate for a few hours or overnight for the seasons to flavor the pork.

6 palm sized potatoes
1 tablespoon of margarine
12 eggs

Once the pork has had time in the refrigerator, brown in a large frying pan.  After browning, drain by putting the pork on paper towels that are on a plate.

Take the 6 potatoes and cut them into fourths.  Chop them in a good processor until they are the desired size.  In the same frying pan that you used for the pork, brown shredded potatoes in margarine.

Once the potatoes are brown, add in the pork.  Scramble the eggs using a fork and then add to the frying pan.  Cook until the eggs are completely cooked, mixing most of the time to really blend everything together.

Put a spoonful inside a burrito soft shell and roll, wrap, and freeze.  It's ok if you want to eat them now too :)  The night before you want to eat them, put them in the fridge and then reheat at meal time.

You can also add any fresh veggies... tomatoes, peppers, onions... whatever you like to make it tastier!  Just remember NO cheese, unless your dietitian has said it is ok.

Supplement shakes

Hubby has been struggling with eating.  He is so tired and beat when he gets home from work, that he doesn't work to eat.  I spoke with his renal dietitian today.  She said there is only one supplemental shake that is recommended for dialysis patients and that is Nepro.  Nepro is a high protein, low phosphorus and low potassium shake.  It is also expensive.  Only one store carries them locally and that is Rite Aid.  For a box of 4 8oz shakes it is $16.

I gave the company a call and through their very friendly customer service found that they would send us some coupons for the shakes.  I also found out that for dialysis patients they offer a special price on a case of 24.  They said that the dialysis unit would need to fill out a form for the better price, but I definitely think it is worth the extra work.  Just make sure you like the shakes before purchasing a case.

What to do with the boxes?

With everything going on with dialysis, appointments, medicine changes, and life in general, what to do with all the dialysis boxes really is a small issue, but they do tend to pile up.  We have an empty box every single day.  That is 30 boxes a month and 365 a year!

The boxes are sturdy and I hate to just recycle them, so I tried giving some away.  A few found homes, but I still end up with tons of boxes piling up.  Tonight I spent some time searching the internet for some creative ideas for using all those boxes!  Some will still end up in the recycling bin, but maybe an idea or two will appeal to you and when life slows down a little you can work on a creative project.

Find 40+ projects pinned on my Pinterest page!

2 weeks of work

Hubby started back at work 2 weeks ago.  The first week he worked 4 days, the 5th day he had an appointment.  This week he worked 3 days, he wasn't feeling well one day and the other he had an appointment.

He did well considering.  He did come home tired, but I'm so proud of him for going.  Speaking with a nephrologist on the phone (not his), he said the most successful kidney failure patients are those that go back to work.  This was great to hear and know.  I'm not sure it is possible for dialysis patients to ever function as well as they did before kidney failure, but it is possible for them to have a good productive life.

I can't say life is "normal", because there are still countless appointments, blood tests, pills, daily dialysis, and he does suffer from fatigue, but he is alive, he is trying, and today is a good day!

*Do you have a positive story about having a good life after starting dialysis?  Would you like to share your story?  Send me an email using the email button on the right column.  I would love to be able to share some positive stories.  The entire story doesn't have to be positive, because as we know dialysis comes with it's own set of challenges, disappointments, and failures.... but if the main theme or the ending of your story is positive... I want to share it!

It isn't an energy star

Today I got our first electric bill after using a full month of dialysis.  It was high, much higher than it normally would be this time of year.  Using the machine for 10 hours a night, every night does end up using quite a bit of electricity, especially since this isn't an energy star appliance.

I still wouldn't have it any other way.  Peritoneal dialysis is what is best for Hubby, but it is going to require quite a bit of budget changes.  If you are on a fixed income and can't handle any increases, this is something to consider.

I did call the electric company to see if there is any help at all or special programs that we can apply for, but sadly I was told no.