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.
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.
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.
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.
Sunday, October 21, 2012
Best intentions
I started this blog with the best intentions, but I didn't realize how busy I would be. I'm sorry my post are sporadic.
Continuing with what we learned at the transplant class. Blood type matters and can make a huge difference in how long it takes to get a transplant.
AB patients can get a kidney from a AB, A, B, or O donor (they have the shortest wait)
A from A, AB, or O donor
B from B, AB, or O donor
O from just O donors (they wait the longest)
There are other markers that they match, the patient who is in the top few on the list and gets closest to all the markers has first option at the kidney.
The wait varies from hospital to hospital. You can be placed on the list for more than one hospital, which does increase your chances. At the hospital we are hoping to work with, the wait for an O patient is 8 years. We were told that AB patients can receive one in just a few weeks.
If you have friends or family that want to donor, but their blood type isn't compatible to you, there is an option of a group swap, where they match several donors, with several patients, so don't give up hope if they have a different blood type!
Continuing with what we learned at the transplant class. Blood type matters and can make a huge difference in how long it takes to get a transplant.
AB patients can get a kidney from a AB, A, B, or O donor (they have the shortest wait)
A from A, AB, or O donor
B from B, AB, or O donor
O from just O donors (they wait the longest)
There are other markers that they match, the patient who is in the top few on the list and gets closest to all the markers has first option at the kidney.
The wait varies from hospital to hospital. You can be placed on the list for more than one hospital, which does increase your chances. At the hospital we are hoping to work with, the wait for an O patient is 8 years. We were told that AB patients can receive one in just a few weeks.
If you have friends or family that want to donor, but their blood type isn't compatible to you, there is an option of a group swap, where they match several donors, with several patients, so don't give up hope if they have a different blood type!
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).
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).
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