[Canuck Bob]

Any proactive strategies to avoid kidney disease?

by Canuck Bob on Sat Jun 04, 2011 5:56 pm

I'm settling in with Myeloma, Now I'm starting to consider some of the warnings in the literature. What strategies do you folks use to lessen the risk of kidney disease, lifestyle, nutrition, etc.? I have a small amount of impairment but nothng even close to a chronic problem with my kidneys. How does a guy keep it that way. Right now i drink enough water to fill a sewer resevoir daily and that is the only strategy I have.

[Pamela Lussier]

Re: Any proactive strategies to avoid kidney disease?

by Pamela Lussier on Mon Jun 06, 2011 2:51 pm

Dear Bob,

A kidney doctor would be the best person to ask this question . If your creatine level is under 2, you probably don't even notice your impairment. if it is above that you do want a kidney doctor to help you with a strategy to keep well. Your kidneys filter toxins and when you have chronic kidney disease, you don't filter toxins as well so your body fills up with them. Some things don't go through the kidneys and some things are a lot harder on the kidneys. If the creatine goes too high, the kidneys may tire out from working too hard and that is when you need to go on dialysis. Being on dialysis is something to avoid at all costs and even complicates your multiple myeloma treatment options. The web site kidney school explains chronic kidney disease and some strategies to keep your chronic kidney disease from going to the next stage. Best wishes and hope you keep your kidneys well.

Pamela Lussier

[trainier2020]

Re: Any proactive strategies to avoid kidney disease?

by trainier2020 on Mon Jun 06, 2011 3:56 pm

I am in the exact same place. My creatinine and all those other counts are climbing. I currently not having any physical symptoms. Like you I am drinking a ton of water and I have looked up everything I should and should not eat. Basically a low protein, high vegetable, low fat diet. Which is not hard for me to do. My appetite is not huge and I definitely do not crave meat. My transplant was Jan. 17, 2011. I am still in Houston at MD Anderson, hoping to go back to Corpus Christi and try and start a "normal" life, while coming back and forth to Houston.

I have been told the kidney troubles is in part due to the tarolimus/Prograf anti-rejection drug. Nothing we can do about that. I also have low WBC, RBC and Hema so they have me seeing a Hematologist Specialist.

I am glad they are keeping such a close eye on things, I don't want kidney failure!!!!

Hang in there and really drink a lot of water. Tricia

[Pamela Lussier]

Re: Any proactive strategies to avoid kidney disease?

by Pamela Lussier on Mon Jun 06, 2011 8:42 pm

Hi trainier202o,

When my kidneys were failing and I was told I had a month before I would be on dialysis, I went on that diet that you are on and I was able to go another 9 months before I needed dialysis. They only problem with the diet is if you have a sensitivity to carbs, you may gain weight is the bad kind that sits on the stomach. My kidneys were very damaged and the diet kept me off dialysis for quite awhile, maybe it will help you from ever being on dialysis. I do hope that for you.

Pam

[trainier2020]

Re: Any proactive strategies to avoid kidney disease?

by trainier2020 on Mon Jun 06, 2011 8:56 pm

Oh Pam, are you saying dialysis is in my future eventually regardless of what I do? Also I am not really on a high carb diet, I eat mostly just fruit and vegetables. No bread, rice, cheese and pasta on occasion. My appetite is still not where it should be on top of it all. I could go all day without eating. So I have been actually losing weight.

This has been a bad day for me. I think all of the drugs in combination have something to do with my moods and the way I feel. Also, I need to get home to Corpus Christi, where my daughter, grandson and little mutt are and this is my hometown. I have been in Houston since December 28th, 2010. I stay with my son and his wife, which is a total blessing, but it's time for me to move on and get out of their hair, they are expecting their first child in December, a Christmas baby! I usually don't get this bad. I have not really moved out of bed today.

I was reading some of the info from the conference in Scottsdale and read where secondary cancers are showing up and I wonder if that is going to happen to me. What are these secondary cancers? Now what?

Thank you for responding to my post. It's not often someone responds. It can be depressing time and I'm sorry to be so blue. Always, Tricia

[Pamela Lussier]

Re: Any proactive strategies to avoid kidney disease?

by Pamela Lussier on Mon Jun 06, 2011 10:11 pm

I'm so glad you are eating what you are eating. My kidneys were very damaged by multiple myeloma itself. I had been walking around with it for 3 years. I hope you are not in that kind of shape. My close friend had a disease just like multiple myeloma called amiloydosis, the year before me. she had a creatinine of 4, which is worse than it sounds, and she has gone down to 1.5 after treatment for her disease. Not all kidney damage is irreversable. She watches her potassium amounts and ocassionally needs a epogen shoot for anemia but she is basically fine.
I hope you will not have to go to dialysis and your kidneys stay where they are or improve. It is best not to worry about all the things that can happen to us. Many of the things we imagine never do happen. I like to use my imagination for artwork. That makes me feel better.
I pray that you will find things that make you feel better.

Pam

[trainier2020]

Re: Any proactive strategies to avoid kidney disease?

by trainier2020 on Mon Jun 06, 2011 10:58 pm

Thanks Pam. I need to get my imagination focused in other areas that are more productive. I have a big imagination and probably do too much reading on the subject as well, especially when these conferences come along.

Have a good night, sleep well and be rested, Tricia

BTW - I've had two autos and an allo with my sister's cells (in a two year time frame) I am 100% en-grafted with her cells to date, but I still have the disease. I still can't my hands wrapped around that one.

[Pamela Lussier]

Re: Any proactive strategies to avoid kidney disease?

by Pamela Lussier on Tue Jun 07, 2011 2:05 pm

Hi Tricia,

I don't get that either. I have people trying to talk me into a double transplant allo/kidney same donor and I don't see that as being any sure cure to multiple myeloma. Allo transplants are so dangerous and I have been in a beautiful remission with just 1 year of Velcade,Dex, Thalimid with 3 more years of just thalomid and right now I'm not on anything.
i really would like just s kidney transplant. I had one scheduled and everyone was encouraging me in it, but I went to an appointment with one of the transplant team doctors and he put it all on hold. He didn't like my donor and he didn't like that multiple myeloma is an incurable disease. He is pushing me to do that transplant that has been done on exactly 12 people ever. So I will have a meeting with the doctors in a few weeks and I will be armed with facts.

I hope you find a happy reason to get out of bed and put your creative energy to work. Staying positive is more healing.

Best Regards,
Pam

[Canuck Bob]

Re: Any proactive strategies to avoid kidney disease?

by Canuck Bob on Thu Jun 09, 2011 2:05 am

Thank you all, I'm better informed and will open this enquiry with my team next week. My wife is a vegetarian who puts up with me. She will help me to adjust my diet. I have been on a fitness campaign for awhile and lost a lot of weight and started taking my health seriously as a response to the decline my undiagnoised Myeloma had me on.

My Vel/Dex is working very well for my first course of treatment. Your advice and experience has helped me to start tracking my kidney numbers as well as my blood.

Emotionally I still hate Myeloma. I have lived for many years as someone who can practice acceptance and move forward with purpose and make the necessary changes. My hips were replaced years ago and that threw me for awhile but I adjusted. With cancer it all seems to move so slow and the answers always seem like more questions.

Thanks for letting me rant.