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.
Monday, November 26, 2012
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).
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.
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.
Saturday, August 18, 2012
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.
Friday, August 10, 2012
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.
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.
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