Need info please

[Ldavis87]

if I have gained muscle and weight since going on dialysis, should they re evaluate my dry weight?

[KidneyCoach]

Yes, haven't they already re-adjuted this??

[Ldavis87 in reply to KidneyCoach]

No, Im asking this for my dad, but no, he was in a horrific car accident , lost too much blood to the kidneys and has been on dialysis since this. When he started going he was very very sick and had lost so much muscle mass and weight, from being in hospital bed for 31 days. He’s now started gaining muscle back and weight, but they still have his “dry “ weight at what it was when he was very sick and not eating. I appreciate you replying to me

[KidneyCoach in reply to Ldavis87]

They should be adjusting his target weight by 1/2k each week. It's a moving target. Have you asked or discussed with his nephrologist?

[Ldavis87 in reply to KidneyCoach]

No, he has talked the women at the dialysis center, the doctor there only comes once a week, but last time wasn’t helpful and was not listening to him. They are taking 11 pounds of fluid each time, trying to get him to that weight he was, when he started. He has no swelling and all levels look great, other that the creatinine. It has dropped from a 9 to 3.8 since 3/28/22. They just keep telling him that if the fluid wasn’t there, it wouldn’t take it. They aren’t understanding that he’s gained weight and muscle. So upsetting and confusing for us

[cs65]

You need to get involved and talk to the nephrologist at the time of his visits. During the pandemic they should be able to use a tablet or smartphone to include you in a video call, even if they don't physically allow you in the center. How is your father doing physically with them removing that much fluid each time? Is he cramping or in any discomfort?

[Ldavis87 in reply to cs65]

Yes, we plan to talk with him tomorrow morning, at the center. He does not do good at all when they take the 11 pounds off. He begged them to only take about 6 or 7, they said they can’t. Hate this place . He is 6’7 and was skin and bones after his wreck on 2/25/2022. Also had part of pancreas removed , we were told the kidneys were shock, after the blood loss of 13 units in the trauma bay. So he was so skinny, at the start of dialysis at the center , after coming home from hospital. He’s got his appetite back now, thank the lord, and we just feel the dry weight should be re evaluated. Like I said, we are completely clueless about the dialysis routine, but didn’t know if this was something they could do. Thanks for your reply.

[burbo9 in reply to Ldavis87]

He has to agree with the fluid removal, they are supposed to be taking his conditions seriously, we are in control of how much they take off. Sadly I have seen this at my center way too much, almost as if they are keeping us sick to have job security.

[cs65]

Yes, of course they can change the dry weight, mine had to be adjusted from time to time. The doctor is the one who gives the orders for his treatments and the nurses carry them out. They should have been notifying the doctor about his change in weight and muscle. He does have the right to file a grievance - it is done by submitting a form to the grievance box. The center is under obligation to respond to grievances each month. I would do this if they fail to respond to you as well. There are other avenues to pursue if the doctor or the clinical manager refuses to do anything. I am a Patient Facility Representative to the IPRO ESRD Network and they will get involved if needed. They work with the Centers for Medicare and Medicaid (CMS).

[Ldavis87 in reply to cs65]

Thank you for your reply, this is very helpful for us. He went dialysis this morning and demanded them to only take 6 pounds off of him. The nurse there treated him awful he said, saying “do you know how long I’ve been doing this?” The rest of the day that ignored him. He has got a lot of anxiety now for each visit. The lady finally said ,”I’m going to get the doctor here to talk with you Friday”, in a hateful tone. Dad told her, that’s what I’ve been trying to tell you I needed for weeks! He tried for weeks to be nice about it, to no avail. He doesn’t want a heart attack or stroke, with them pulling that much off. He is NOT swollen and creatinine is steadily dropping /stabilizing. He’s just turned in paperwork for transplant. We are still very hopeful that the kidneys will return to 100%. The “doctor” comes around once a week and just says hey, how you doing. He does not listen to dad or anyone else there won’t either. I got in touch with his trauma surgeon today and told him we needed a nephrologist that he would recommend. He never had one, went straight from hospital to dialysis center the next day. It’s just a nightmare at this point. I’m hoping the trauma surgeon will lead us to the right person. I have told dad to get the complaint number on Friday and I will be calling.

[cs65]

Whew! You're right - he needs an actual nephrologist! I am so sorry you guys are going through this. His primary care provider is actually the person who should give a referral and I sincerely hope you are located in an area that has a proper choice of nephrologists. I also look them up on my hospital's physician finder on the hospital website and read their patient reviews, too. I now go to a transplant nephrologist since I had a transplant in Dec. 2020 after 4 years of dialysis. I chose to go to one who who works in the same area as my transplant hospital because he specializes in transplant pre and post care. Good luck to you in finding the right dialysis center and nephrologist.

[I844]

A quick way to see if there is any excess fluid left after dialysis is to press hard on the shin - if it leaves an indentation that doesn’t immediately spring back, it tends to suggest that there is fluid still to take ... this is NOT foolproof, it can just be an indicator. It is possible that they may be trying to get his fluid overload levels to a lower point than is achievable in a few sessions. For example, I was once pumped full of saline when I had sepsis (it saved my life) but was left 10 kg (22lb) over dry weight. Obviously I couldn’t take all that off at once....it took two weeks of daily haemodialysis sessions to get back to my dry weight.

HoweverI digress.

I would insist on seeing a nephrologist for a full explanation of the plan for your father.

[Ldavis87 in reply to I844]

Thank you for your reply. 😀 this is a tool we will certainly use. 😀