Tuesday, September 25, 2012

Making set up a little easier

I wish I could say that we have adjusted to the daily routine of hooking Hubby up to the dialysis machine, but we haven't.  Every night there is an emotional weight that seems to come with the hook up.  However, we did find out something that has made some days a little easier.

Nights are rushed.  Between children, dinner, activities, and hooking Hubby up, I feel busy most nights.  Some nights are harder than others to fit it all in.  An email from Hubby's dialysis nurse, offered a thought.

We were told that we can prep the machine at any time and simply hook Hubby up when he is ready.  Some days I don't get a chance to do all the prep work earlier, but today I was able to make the time to clean up the machine, empty and clean the bucket, and get the bags attached and ready.  This will make my night easier.  After picking up our teenager for school, it is off for a doctor's appointment, then home to make dinner, then instead of rushing in to clean up everything and prep the machine, I will simply have to go in with Hubby when he is ready, clean his exit site and hook him up.

What happens if the power goes out or the machine becomes unplugged?  It's ok, just click the green go button until the machine is ready to go again.

Ask your dialysis nurse and then give it a try!  It may help make hook up time a little easier.  Just make sure you save your mask so you don't have to use a new one for the hook up (you can see in the picture, I leave mine on the machine).

Sunday, September 23, 2012

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!

Wednesday, September 19, 2012

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.