Response to want to chat

[PD20]

Hi, I am relatively new as well. On PD for one year now. Joining this chat line is the first time I have heard other stories of people in my similar condition. I have wanted to chat with others on dialysis since I started this whole process. I struggle with eating enough, my leg and arm muscles don’t work like they used to, and I run out of energy very quickly. Also I’m cold all the time. I am assuming all this is part of dialysis patients? Is this what you experience?

[cs65]

I did hemodialysis for 4 years before a transplant and Yes, I was cold a lot of the time (esp. when hooked up to the dialysis machine). I only exercised on my non-dialysis days because I was tired when I got home from dialysis. However, I'm in touch with a dialysis patient who exercises pretty obsessively every day. I think he does it before dialysis and he claims to have more energy now than he used to. I guess it's all up to the individual. I would try doing some gentle stretches of your arms and legs and eventually work up to using weights or stretchy bands for resistance and to gain strength and flexibility and range of motion. You can work with your renal dietitian for ideas to increase your eating - you do need protein while you're on dialysis, for example. Have you talked with your nurses and nephrologist about this?

[Kirkconnell]

Hello!Come March 1st I will have been on hemodialysis for a year. I'm experiencing the same things you are .

For the coldness, I've found that keeping my lower back warm keeps me warmer as well as dressing in layers. My go-to's are vests/parkas. They don't overheat my body, but they keep my kidneys warmer. Clearly, with the layers, it's way easier to remove an article of clothing if you're too warm. Also, invest in heated blankets! I have one in my room and one in my living room. lol Another thing, which might not seem all that important is I've told all my friends/family that I run colder now. When I visit, they turn up their temp just a few degrees. <3 God bless them!

The muscle weakness is present as well. I've started to do yoga - - simple stretches but still a full body work out. I feel like I have more energy now, a year later, compared to when I first started dialysis. I don't know if you experience muscle pain/soreness. I did, and after talking to my doctor, we decided to add Effexor. It immediately took away the ache and doubled as an anxiety/depression med.

I can't lie, I sometimes get in food slumps of just not wanting to eat anything. My diet seems so dauntingly limited that it became overwhelming. So I decided that all my snacks/meals need to contain some type of protein - - even if its just a little bit and even if its not the healthiest - - like deli meat or bacon (sometimes). My mentality is that I've greatly changed my diet and as long as it doesn't become habitual, I can treat myself to some nicer not as healthy cuts of meat a few times a month. lol Premier Protein shakes are my lifesaver! I use them as snacks or meal replacements. They're dietician approved, full of nutrients and I don't mind the flavor - - chocolate is my fav. Oooh! I've found this brand called Kodiak which is high in protein as well. They make oatmeal, pancake/waffle/scone mix, and a protein snack mix that tastes delicious and only requires honey and peanut butter!

I hope this gives you some ideas. Welcome to the group. Stay strong and know you are not alone.

[Diamister]

Hi. I’ve only been on dialysis for 2 months but experience much of what you describe. I’d don’t even know that getting the shivers while hooked up to the machine was a thing, so that was good tina hear from someone else. My diet bounces around all over the place, from raging hunger when I don’t care what I eat to nothing at all and I have to force food down me. Lost a lot of muscle from being in hospital for a few weeks and finding the energy to exercise is tough but actually just getting out and walking for 29 minutes, or making sure I’m going up and down stairs regularly, is helping me a lot. Just have to realise my limitations and know it’s ok just to sit and rest. All sounds like a typical experience which is reassuring in its own right. Good luck, it’s good to share experiences, right?