Tuesday, February 4, 2014

New blog

I'm sorry I haven't been good about keeping up with this blog.  Last summer my husband had a ton of health complications, surgeries, hospital stays, and went from peritoneal dialysis, to in-center hemodialysis, and now is doing at-home hemodialysis.

I'm working had to lose weight to be a kidney donor for him.  You can track my progress and see some dialysis and other updates at My New Blog.

Thursday, March 28, 2013

Free magazine for dialysis patients

The National Kidney Foundation is offering a free magazine 4 times a year for dialysis patients.  Please visit http://www.kidney.org/patients/KidneyLiving/index.cfm to sign up.

Thursday, January 24, 2013

Losing weight for a transplant

Hubby has now been on peritoneal dialysis for 7 1/2 months.  We have adjusted and gotten into a routine, so now we are focusing on getting him on the transplant list.

We took a class many months back and learned quite a bit.  A lot of it was very emotional, but things we needed to know.  Like the weight requirements for transplant patients and donors.  Every hospital is different, so check with yours if you are concerned about your weight and I recommend you do that before you get to stage 5, if that is possible, that way you can be working on it ahead of time.

Since I want to be tested as a donor, I have to lose weight too.  We started just before Christmas and as of today Hubby has lost 13 pounds and I have lost 10.  Our goal is to be at our goal weights by December 2nd to start the process of getting him a kidney.  Why December 2nd?  That is hubby's birthday, he will be 36.  It is also a realistic time frame for the amount of weight we need to lose.

Today was Hubby's monthly kidney check up.  The nurse, doctor, dietitian, and social worker were all pleased with his weight loss.  He talked to them about how hard exercising is on his body.  This brings me to why I'm writing this post.

Having kidney failure does make things like exercising and losing weight harder (hubby's doctor told him exactly that today).  This is important to know for kidney failure patients and for their loved ones.  It takes time for anyone to lose weight and it is frustrating.  For a patient waiting to get on the transplant list, it may feel like climbing a mountain and with already being tired and worn out it can feel like you are walking up that mountain holding 300 pounds of sandbags.  For loved ones it is hard, it is hard to see your loved one doing dialysis, suffering, and waiting to get on the transplant list and all because of their weight.

It is normal to get upset, frustrated and maybe even angry.  I don't have the answers, I just know what we are and have been going through.  We both hate being overweight, we hate that he can't get a kidney because of the weight, but it had to come from deep within each of us to work towards losing the weight.  For me, I have a chance to give him a kidney, every day I am reminded of how much I love him and how much I want to lose this weight to get tested.  About a week after I started, he joined me, he walks, uses an elliptical and watches his calorie intake.  It is a slow process, but the weight is coming off.

We have tried before to lose weight, what is different this time?  The reason.

Tuesday, December 4, 2012

Know your options

Friday night, at my daughter's Christmas concert, I meet someone and we started discussing my husband's dialysis.  This man had a friend who was going in for surgery that Monday so he could do Hemo-dialysis.  We talked for quite a while about peritoneal and how I felt it was a great option.

During our conversation I found out that his friend wasn't even offered peritoneal as an option.  Talking to our dialysis nurse in the past, she has said that many places don't offer or encourage it, I find this very disappointing.

For those just starting to deal with kidney failure, make sure you know your options.  If your hospital doesn't offer peritoneal, find one that does and keep the door open to this option.  Ask if they offer a class on the different options.  Our hospital required that we take a class before Hubby made a final decision.  There are big differences in Peritoneal and Hemo- Dialysis, make sure you know them all and make the best decision for yourself.

I'm not a doctor or a nurse, these are just my thoughts as the wife of a kidney failure patient.

Monday, December 3, 2012

Dr Murray

 Dr. Joseph E. Murray, who performed the world's first successful kidney transplant and won a Nobel Prize for his pioneering work, has died at age 93.

Read more: http://www.nydailynews.com/news/national/nobel-prize-winner-behind-successful-kidney-transplant-dies-93-article-1.1208535#ixzz2E2pJGks1

Monday, November 26, 2012

It's becoming routine

I honestly wasn't sure it would ever happen, but setting up, cleaning up, and having hubby do dialysis is becoming more routine.  I can now do it all without much thought and we have now found ways to turn the time into a positive time.

Setting up the machine early has definitely made things easier.  It gives me freedom to do it when I have time and then it is always ready when it's hook up time.  After hooking Hubby up and cleaning his exit site (which has to be done every day until he receives a transplant), I climb into bed and we snuggle and talk until he is ready to sleep.  Some of our best conversations happen during these times.  Our marriage grows stronger and stronger each day, which I believe has really helped us get through all of this.

It is still emotional.  I'm not sure there will ever be a time that it isn't.  I cry less, but I still have days when it hits me.  When I realize that Hubby needs a new kidney, that his health will continue to decline, even with dialysis until he gets his transplant.  And even then, he will be on meds his entire life and continue to see doctors regularly, because all kidney transplants experience rejection.

During our transplant class we learned that there are different types of organ rejection. 

Hyperacute - this is the most severe form of reject and happens within minutes or hours after the transplant surgery.  This is a very rare type of rejection.

Acute - this is most common.  It takes a while to happen, but most often happens during the first 6 months after transplant.  This type of rejection can be treated with medication.

Chronic - This can happen at any time and we were told in class that this eventually happens to most transplant patients.  Kidneys, depending on the source (living donor or deceased), only last a certain number of years after transplant.  They last longest from a living donor. 

As always, I'm not a doctor or a nurse.  The information I share is from personal experience and from what we learn from doctors and nurses as we continue on this journey.