My husband experienced some signs of dementia and also unexplained occasional vomiting earlier this year. I attributed the dementia to aging, and the vomiting to the chemistry of dialysis.
By late summer the labs were not good. The doctor said that perhaps the peritoneal dialysis was not working well for him and he might have to go on hemodialysis permanently.
But then something our dialysis nurse said to me really got me to thinking. Most of his vomiting happened at suppertime. By then the solution left in him by the dialysis cycler had been in since about 7:30 a.m. And I remembered that after his hospitalization in the summer, he had been on hemodialysis (since rehab facilities won't do peritoneal dialysis...), and the problems had gotten better. So perhaps having hemodialysis occasionally would help, and/or adding a manual exchange late in the date before bedtime.
We tried both. Since the hemo port had not yet been removed, our doctor agreed to have one hemodialysis session added (on top of his daily use of the cycler). AND he did a manual exchange. Through trial and error we found that doing that additional exchange about 7 p.m. worked best (he started the cycler a bit after 9 p.m. and it runs for 10 hours every night).
Voila! The dementia cleared up and the vomiting stopped. The lab results are great! In fact, our nephrologist said he didn't see how they could be any better.
So the takeaway lesson, I think, is that the toxins had started to reabsorb. Every body is different! Don't be taken in by rigid rules about schedules. It is ok to mix manual and automatic exchanges. AND it may be helpful to use hemodialysis if you happen to have both the port and the catheter.
It helps that we have the world's best nephrologist (we think!). He listens and he thinks and he cares. He is willing to try whatever might work.
Sunday, December 18, 2011
Monday, May 9, 2011
Is Fast Food Verboten?
I will be the last person in the world to recommend fast food for you. But if you are traveling and a decent fast food restaurant is all that is available, you might be able to have a not-so-bad-for-you meal. The secret is to SPEAK UP!
Some fast food chains such as In/Out Burger will cook your meal to order without any additional salt. That includes the burger as well as the fries. You will perhaps wait a bit longer but it will probably be worth it.
McDonald's will scramble an egg for you without salt (as I recall).
Just because a restaurant looks small and local doesn't mean it uses healthy recipes. They may rely on cream of mushroom soup and salt to help their food along. Maybe the cook is still stuck in the 60's. It's ok to ask when you first go into a restaurant if it is possible to order food that is very low in salt (or whatever). Once they know you are asking because of health issues, they will not be offended.
Before you travel, you might look at some of the nutritional tables that are online for the various chain restaurants. What you find may sicken you. And then again, it will at least help you know whether it will be possible for you to eat there safely.
We find that if we are on a day trip, one meal that isn't perfect isn't the end of the world. But traveling for several days can make a huge difference in your dialysis results and your health. Maybe packing an almond butter or peanut butter sandwich for emergency situations would help.
Be polite. Be inquisitive. And be resourceful. And....be healthy!
Some fast food chains such as In/Out Burger will cook your meal to order without any additional salt. That includes the burger as well as the fries. You will perhaps wait a bit longer but it will probably be worth it.
McDonald's will scramble an egg for you without salt (as I recall).
Just because a restaurant looks small and local doesn't mean it uses healthy recipes. They may rely on cream of mushroom soup and salt to help their food along. Maybe the cook is still stuck in the 60's. It's ok to ask when you first go into a restaurant if it is possible to order food that is very low in salt (or whatever). Once they know you are asking because of health issues, they will not be offended.
Before you travel, you might look at some of the nutritional tables that are online for the various chain restaurants. What you find may sicken you. And then again, it will at least help you know whether it will be possible for you to eat there safely.
We find that if we are on a day trip, one meal that isn't perfect isn't the end of the world. But traveling for several days can make a huge difference in your dialysis results and your health. Maybe packing an almond butter or peanut butter sandwich for emergency situations would help.
Be polite. Be inquisitive. And be resourceful. And....be healthy!
Edible food without salt??
We have not been eating salty foods for many years. But now with the dialysis, weight and edema seem to be critical issues. I find that I must adjust our diet daily to reflect whether his weight is up....or down. (Just as he changes the solutions he chooses for the overnight dialysis...).
I thought I was doing a good job of tracking sodium intake until I used canned beans and watched his legs swell. Some of the things I thought worked (like rinsing canned beans) weren't always enough.
The other night I had some really lean organic ground round left. No hormones, etc. We decided it would be nice to have Sloppy Joes. I also had a big bowl of black beans I had cooked in the crockpot the day before....with lots of water and NO SALT. I know Sloppy Joes don't usually have beans, but we decided we would have them anyway.
My results turned out to be really good (we think!). I offer this recipe in hopes it will help you see that you do not need a lot of salt. Amounts are approximate. The cloves, vinegar, and sugar are probably the most critical ingredients in terms of amount. If you use ground turkey, you might want to make sure it wasn't brined before it was ground....
I thought I was doing a good job of tracking sodium intake until I used canned beans and watched his legs swell. Some of the things I thought worked (like rinsing canned beans) weren't always enough.
The other night I had some really lean organic ground round left. No hormones, etc. We decided it would be nice to have Sloppy Joes. I also had a big bowl of black beans I had cooked in the crockpot the day before....with lots of water and NO SALT. I know Sloppy Joes don't usually have beans, but we decided we would have them anyway.
My results turned out to be really good (we think!). I offer this recipe in hopes it will help you see that you do not need a lot of salt. Amounts are approximate. The cloves, vinegar, and sugar are probably the most critical ingredients in terms of amount. If you use ground turkey, you might want to make sure it wasn't brined before it was ground....
Janet's Sloppy Joe Chili
~1 lb very lean ground beef (without hormones if possible) (or ground turkey if you prefer)
1 2" white onion, chopped
2-3 T olive oil
2 cups home-cooked black beans (without any salt) and some of their liquid
1 15-oz can no-salt tomato sauce
2-3 tablespoon dark brown sugar (can use Splenda brown sugar if you prefer) (not packed like you would normally measure it)
1/4 to 1/2 cup red wine vinegar
1/4 teaspoon ground cloves
1 tablespoon Worcestershire sauce
1 tablespoon Tabasco (optional)
Brown the onion and ground beef until the meat is no longer pink. Add the rest of the ingredients and heat thoroughly. Serve in hamburger buns or in bowls. I like mine topped with yogurt. Not everyone does, however.
This will serve at least six. Maybe more, depending on your portion sizes.
Friday, April 22, 2011
Alligator Skin
Recently we have been trying to solve the problem of REALLY dry skin. Skin that looks like alligator skin. He had tried to ignore it ---- until a nurse told him that the skin is a barrier for infection, and by ignoring it he was inviting infection. That got his attention when I had not been able to!
A few weeks ago I bought a hand-held motorized brush called Prox, made by Olay. I got it at Costco for about $37. It came with two brush heads and a tube of exfoliating cream. My real purpose was to use it on my face so see if it would make my skin look better and perhaps make some of my wrinkles less apparent. Well, I've fallen in love with it. I remembered that I had a jar of Clinique exfoliant cream, so I got that out and used it on my legs and arms (and often on my face too, in place of the Olayl cream).
Last week I was able to persuade my husband to try it on his legs. His legs are so dry that I find large pieces of skin on the bedroom carpet. After you use the brush and cream, your skin is able to absorb moisturizing cream better for the pores are more open. Yesterday he sat on the edge of our big bathtub and I scrubbed his legs for him and then rubbed in a LOT of Cetaphil cream. And while we were at it he soaked his feet and I gave him a pedicure.
Even he admits that it has made his skin feel much better. I'm not embarrassed to have the nurses and doctor see his legs any more. And he feels better.
Later in the week we're going to use it on his head too.
So one problem that seemed insurmountable has been solved. The secret seems to have been to remove the dead skin. Just applying cream to the dead skin was hopeless.
A few weeks ago I bought a hand-held motorized brush called Prox, made by Olay. I got it at Costco for about $37. It came with two brush heads and a tube of exfoliating cream. My real purpose was to use it on my face so see if it would make my skin look better and perhaps make some of my wrinkles less apparent. Well, I've fallen in love with it. I remembered that I had a jar of Clinique exfoliant cream, so I got that out and used it on my legs and arms (and often on my face too, in place of the Olayl cream).
Last week I was able to persuade my husband to try it on his legs. His legs are so dry that I find large pieces of skin on the bedroom carpet. After you use the brush and cream, your skin is able to absorb moisturizing cream better for the pores are more open. Yesterday he sat on the edge of our big bathtub and I scrubbed his legs for him and then rubbed in a LOT of Cetaphil cream. And while we were at it he soaked his feet and I gave him a pedicure.
Even he admits that it has made his skin feel much better. I'm not embarrassed to have the nurses and doctor see his legs any more. And he feels better.
Later in the week we're going to use it on his head too.
So one problem that seemed insurmountable has been solved. The secret seems to have been to remove the dead skin. Just applying cream to the dead skin was hopeless.
Monday, April 18, 2011
What are Your Biggest Problems?
As I start this blog, I want to respond to the problems you are having also. So while I'm getting started, I hope you will jump in and ask questions. I can't promise to answer every day, but I'll do my best.
Sharing Secrets
After helping my husband live with peritoneal dialysis for a year and a half, I realize that there are many challenges that aren't well covered in the forums on the commercial sites related to dialysis. Dry skin. How to avoid wild weight swings. Eating out. Recipes that don't cause problems. Traveling. Keeping records. Preparing for an unexpected hospitalization.
I love to cook. And we both like to eat. But the salt restraints have become a big issue. I can either cook at home, using no processed foods, or I can cook using some processed foods, or we can eat at a restaurant and take our chances. Since I don't always have the time and energy to cook everything without any processed foods, I hope to give you here the brand names of some of the foods that have become favorites as I adapt or develop recipes.
I love to cook. And we both like to eat. But the salt restraints have become a big issue. I can either cook at home, using no processed foods, or I can cook using some processed foods, or we can eat at a restaurant and take our chances. Since I don't always have the time and energy to cook everything without any processed foods, I hope to give you here the brand names of some of the foods that have become favorites as I adapt or develop recipes.
Subscribe to:
Posts (Atom)