Dialysis struggles

[NurseRed]

I have been on dialysis for a year .I am a diabetic. My dad was on dialysis and passed at 58 waiting on a kidney. I feel like ive been given a death sentence. One thing that's hard for me im on home peritoneal dialysis and have gained 60lbs in one year.i have always had low self esteem now this has dropped it more plus confused my phosphorus is up albumin down so anything i eat protein wise has phosphorus im really lost depressed and confused any advice appreciated

[cs65 NKF Ambassador]

Did you ever consider hemodialysis? We have diabetics in our hemodialysis center who seem to do well and are well monitored by our dialysis staff, nephrologist and renal dietitian. I agree it is very challenging to manage diabetes and kidney disease together, but you maybe need the help of a renal dietitian to find some better food choices. I also find it is good to have the support of other patients that you can talk to at the center and share tips and ideas for doing better on dialysis or just plain talking about our daily lives. Dialysis in center is a lot safer than you'd think these days. We have our temperature checked when we arrive and get asked all the COVID health questions. No visitors are allowed in the waiting room or in the treatment area. We all wear masks and socially distance and the staff do, too. The treatments themselves go as normal with staff wearing masks, face shields and gowns and gloves and we all wash hands or use hand sanitizer as required. I feel safer there than just about anywhere! Please let us know how you're doing - we care!

[WYOAnne NKF Ambassador]

Hi NurseRed!

Welcome to our group! Sorry you are having a hard time. I know this is also a difficult time with COVID, and I am sure that doesn't help any of us.

Wonder if you could talk to your PD nurse regarding a kidney diet that is right for you? I know several on this site have gone to a renal dietician with a copy of their labs, and have gotten a meal plan for them to follow.

There is also a PEER MENTOR program thru the NKF. Maybe it would help if you could talk with a peer, weekly, that is going through PD dialysis too.

Look at the NKF website, Peer Mentor program is under "support."

Take care of yourself! Prayers!

[KidneyCoach NKF Ambassador]

Hi, so sorry abut all you're going through. Yes, you are a newbie and sound like you're overwhelmed. Firstly everything we eat has phosphorus, so that is unavoidable. Have they suggested or given you any binders. Binders are like a magnet for phosphorus. When taken with meals or snacks the phosphorus binds to it in the gut and removed in the stool. If your albumin is low you need more protein.

A) ask for some one on one time with your dietitian at the clinic. Discuss your concerns about weight gain lab values like phosphorus and albumin and be certain you emphasize you need assistance.

B) ask for one on one time with social worker. Explain your feelings. You could be depressed. There is no shame in getting counseling and or medication. Anyone with a chronic illness is at risk for depression.

C) be sure to share ALL you've told us with your nephrologist. Its critical for them to know this in order to give you adequate and proper care.

I know its overwhelming. I know it can feel like a death sentence. But listen, its not! It IS doable. Find a hobby, take a walk, go to the park, find other support groups. Just keep talking. Maybe start a journal and write about your feelings. You CAN overcome this.

You are not alone.

Again, You are NOT alone.

Blessings

Amy

Dialysis nearly 19 years

[felizesperar]

KidneyCoach - I agree with everything you am shared here! I also think going into the clinic to get the treatments help you in many ways. We used to have an aide come to the house to provide treatment but by husband has many issues and when you go to the clinic you always have at least one nurse there to help you, and typically the doctor sees you every week. They can see what is going on with you and can make real-time adjustments. I also agree that even during COVID, they dialysis clinic we go to here is very safe. I wish you well

[Darlenia]

Hi NurseRed! I'm glad you reached out to us. As Kidney Coach stated, please check in with the wonderful professionals at your dialysis center regarding your situation. I'm sure they will help you turn things around. I noticed that you are on peritoneal dialysis as is my husband. Because PD uses dextrose based solutions (yellow/green), weight gain is common. However, there is another type of solution (purple) that is non-dextrose based which is better for diabetics. Some PD nurses may refuse to order this for you (since its a bit more expensive to them), so you may need to be firm about it. Indeed, you may have already done this. You may also want to consider approaching your dietitician about modifying the dialysis diet as it has some elements to it that are counterproductive for diabetics and weight. I'm glad you're here. We're all here- cheering on to a great outcomes! Please keep us informed.

[elizf461]

I can relate. I do in center dialysis and the support they give is incredible. My father had a lot of health issues, but I my life does not have to be like his. You and I both alive and we can be our own advocates in this journey we are on. It can be the hardest thing to see the positive side of something when you feel like you are being dragged the dessert, with your world crumbling around you. As cliché as this might sound, where there is breathe there is hope. We don't know how much time any of us have left, but by golly, I am going to fight for my life for as long as I can, because I am the only one who can. Fight for your life!!! Do you what you need to do to survive. Research. Get Help! You are worth it!

[NurseRed in reply to elizf461]

Thank you so much for your upbeat reply im going to try my best