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@pegalini

Hey Ginger….Thank you for responding to me. I had endometrial cancer back in 2000. I had a hysterectomy followed by extensive internal and external radiation. The radiation caused the damage to my kidneys, urinary tract and bladder. All was fine until about 2012 when I started having frequent uti’s and then in 2016 was when everything really went bad. One kidney is totally gone (damaged ) the other barely works, my bladder is non functioning. I have had a catheter since 2016 and a suprapubic catheter (one that comes out the side of my abdomen ) since 2018. My kidney disease has gotten worse to the point of now the fistula is needed to start dialysis.
I do have a good, supportive family but I really need a group that understands the diet and what I am going thru. I will check into the site you sent me and see about the Zoom group. I really do not know much about the diet. My nephrologist is not into the nutrition aspect of it. I don’t know…sometimes I wonder about him. Other than that I feel I do get good care.
Thank you Ginger for the information. Thank you so much for reaching out. Peggy

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Replies to "Hey Ginger….Thank you for responding to me. I had endometrial cancer back in 2000. I had..."

@pegalini That's a lot to have to deal with! Yours is certainly not the first time I have read while we are busy getting one problem remedied, another happens.

Yesterday I had an appointment with my nephrologist, who I simply adore for her conciseness and education. One of the things she strives for is the concept of healthy systems so we can do dialysis. Albumin level, which is a blood protein, is ideally in the normal range, as dialysis can deplete your system. I have been struggling with that, and she recommends several small meals a day, including quality protein. Peanut butter [if you can tolerate it] on toast, a hard boiled egg, chicken, cottage cheese with fruit, you get the idea. I myself get many days that food does not appeal to me at all, so I have to force myself to eat. BTW I am also a cancer patient undergoing chemo, so that plays a factor!

On the website I mentioned to you before, there is a lot of information about diet. Also, going to American Kidney Fund website, you will see information about dialysis and diet https://www.kidneyfund.org/kidney-disease/chronic-kidney-disease-ckd/ckd-resource-center/

As you may have heard before, everyone is different, and what works for one may need to be tweaked in your situation. That is why Mayo Connect is important, as we share what has worked, or not, for us. We learn from each other! And, I will say, that it is empowering to have a sayso in our treatment, and work with our team to make decisions together.

What will you do today to start getting ready for fistula placement? do you have someone with you to drive you home, to take over your chores for the first several days?
Ginger