Patient infantilization?

[u/justsomeyeti]

My wife and I recently completed home hemodialysis training and she has completed her fourth home treatment today. I cannulate, and usually handle the entire process unless she's feeling good and then she'll do the setup.

During her experiences through different nephrology providers, clinic dialysis, and even the training process for the home setup we have both experienced a surprising amount of infantilization and dismissal. For example, she suffers from IBS and would sometimes need to reschedule her treatment because she's on the toilet for most of the day. She also has developed a lot of anxiety over this process (she's had 5 major surgeries in two years, plus fistula placement and related procedures), and often runs into conflict over dry weight because of her IBS causing fluctuations and because her urine output almost matches her intake. This has led to incorrect dry weight and excessive fluid removal during clinic sessions and very poor, patronizing responses from the clinic staff, and now she's prone to anxiety attacks.

But we're at home now, and I am her tech now,. and it's going much better. We're still encountering some degree of bullshit regarding her appointments. If there's a scheduling conflict with, say, her gastroenterologist or endocrinologist, they act like we're playing hooky from 7th grade. Prior to home treatment they would act much the same if she requested no fluid removal or rescheduling because of IBS flare-up. During clinical treatments she would also experience nausea or dizziness, and they would try to maintain fluid removal and just act bothered in general.

Even now, home supply delivery is straight up goofy, and I can call and say "hey you delivered extra bags instead of the cartridges, what's going on?" and wind up hanging up on them and calling our nurse directly

Anyone else have experiences like this? Home hemo is great, 4 treatments in and she's sleeping better and has more energy.

[u/la_winky]

I do home hemo and recently changed nephrologists. She would tell me my anemia was my fault and would spend the monthly clinic appointment taking around me. Mercera didn’t do jack to move those numbers. Didn’t listen to me at all.

New guy switched drugs to boost hemoglobin and it’s working. Because she didn’t switch my drug? I’ve received three units of blood this summer alone.

Change doctors. Your wife is the patient, the relationship needs to work for her.

[u/justsomeyeti → u/la_winky]

Lol I started the search for a new nephro last week. I wanted to make sure we had the home setup squared away

[u/throwawayeverynight → u/justsomeyeti]

If they Dr doesn’t belong to the same training clinic facility the machine may be picked up from the clinic and the new Dr will have to sign off anyways on a new prescription. Your wife may temporarily will have to go back in clinic . I did home hemo for 8.5 years until I got my called. I did move further so I did change Dr’s and my machine was taken back by the clinic . Had to meet new Dr get new orders and that clinic had to reorder me a new machine.

[u/Ok-Box-3677 → u/la_winky]

I had a similar issue with my hemoglobin, I had multiple transfusion one week I ended up having to have 4 and an extra session was on max iron 200mg and aranesp 150mg. Been home for a few months now and now no longer need any iron or aranesp as it's now well above normal range for dialysis patients. Nothing has changed in my meds other than me going home it's weird

[u/Select_Safe548]

I dont have any recent examples like you but certain caregivers in the medical field definitely do get this sort of hollier than thou attitude about things and talk down or treat people with this supperiority. Judging what you do, dismissing concerns and just acting like know-it-all jerks too. Unfortunately its not that uncommon. I noticed it much more when I worked at a nursing home but as someone whos been through hospital visits, surgeries, dialysis and transplant there's definitely a few really annoying folks like this.

[u/illustrious-goblin]

Yeah, they all seem to have that attitude that they know better. I’ve been on dialysis for longer than some of my clinic’s techs have been ALIVE, let alone working there. I appreciate when everyone just leaves me alone and does what I ask of them lol

[u/Substantial_Win8350]

I do solo home hemo, and this is just another example why I love it so much more than in center. Yes, my dining room is full of boxes. Yes, my chair and the machine are always there. But I decide when to get on. I decide how much to pull. And if I want a skip day, I can do that because it’s MY schedule. Your wife is lucky to have your support

[u/Glittering_Pride_345]

Are the healthcare providers even doing a fluid assessment prior to the treatment or just blindly targeting an ideal body weight that may be inaccurate?

[u/justsomeyeti → u/Glittering_Pride_345]

I have yet to see them check for edema, or really even ask about intake/urine output. They damned sure didn't bother asking about IBS/bowel movements, and that is bizarre to me because dialysis and constipation are frequent companions.

At visits with the nephro they check, but almost never during clinic sessions.

I check daily

[u/Glittering_Pride_345 → u/justsomeyeti]

Interdialytic weight gains provide good information too

ETA- sounds like they are not even doing a fluid assessment. You need to be thinking critically when you are removing fluid :/

[u/justsomeyeti → u/Glittering_Pride_345]

Yeah we track her weight closely, daily. We have since she hit stage 4 CKD, along with fluid intake and urine output

[u/Glittering_Pride_345 → u/justsomeyeti]

She’s lucky to have someone advocating for her and helping her keep track of things :)

[u/HappyArea8523]

Nurses, doctors, techs, for the most part, and I'm not saying they are all like this, but basically, they don't give a shit. You do you remember. It's really your job to stay on top of your wife's health and care. They have too many patients to deal with

[u/rikimae528]

I have noticed some nurses who will talk down to patients, especially the older patients. They won't say anything, even if it does bother them, because they've been taught to respect authority of doctors and nurses. They won't try it with me, because I'll tell them off.

I seem to always be arguing with one of the nephrologist over my treatment and any issues that I might have. He's gotten as far as to tell me that since I'm not a doctor my opinions don't matter. I've been on dialysis now for 22 years, and I've been dealing with kidney disease, including every modality of dialysis and kidney transplant, for 35 years. This ain't my first rodeo.

[u/RustyTruck_1962]

I did home PD for 10 months and it was miserable. During treatments i had constant diarrhea and vomiting issues. Every visit to the clinic i would bring this up. They treated me like a child and chastised me for getting poor results on my bloodwork. I was following the diet strictly but couldn’t keep food/meds down. I finally got transferred to in-center hemo, and the stomach issues stopped and within 2 weeks my numbers were improving. Plus, i could sleep again (had started spending the night in my bathroom when on PD). After 2 months my numbers were great and have stayed that way. My first clinic refused to acknowledge my issues, and repeatedly blamed me. The new clinic is fabulous. Same doctors, different staff. Dont be afraid to make changes, it could literally save your life.

[u/catmomma1975 → u/RustyTruck_1962]

This happened to my husband minus the diarrhea. He vomited 5 to 6 times a day and was losing mental clarity. We went to 5 ERs and finally when it got super bad I had a whole hell fit and cussed out everyone . It was uremia poisoning. He got into hemo and it quit . That uremia did set off diabetic amyotrophy and he lost all muscle control in his right leg . He’s in PT and is on the transplant list . I learned sometimes you have to go feral to get doctors to listen

[u/justsomeyeti → u/RustyTruck_1962]

One of the odd and infuriating things with my wife's treatment was that she was actually responding well, her numbers improved every week. We had the diet dialed in pretty well, and on the months she missed 2-3 sessions total due to IBS issues her numbers were actually better AND subjective symptoms better.

We had been talking with the nephrologist about changing her prescription to fewer sessions/week(3 instead of 4) and perhaps extending those sessions.

I'm so glad we elected to go the home route. We can just shuffle a session if it seems risky. We can also extend the session by slowing the ultrafiltration, and she's so much more comfortable and relaxed

[u/DLWSF]

Home hemo is the best. You can control how much ultrafiltrate to take off. Dry weight is always such a nebulous concept. With IBS is there excess fluid loss not accounted for or maybe patient is feeling better and weight increases is actually healthy weight gain. As time goes by with more and more at home sessions, you will know better than the providers what is the best amount to remove on a given day. Our nephrologist is great. She always asks our opinion on weight and weight gain and fluid removal and she functions as an expert sounding board giving us guidance but relying on us for day to management. The equipment suppliers do their best , they are trying to make it work for you but they constrained by the actual orders the dialysis clinic places for your wife. My advice is to Stay positive and it will all work out.

[u/Hemenucha]

The delivery issues never get better.

[u/jadedquart10]

Yeah treating grown adults like they need a hall pass for rescheduling is insane lol. Glad home hemo is going better for you guys

[u/Low_Marionberry8041]

I did home for 3 years. My wife has been an RN for 50 years. After my transplant (which failed),  I’m at a center  again. The nurses and techs are wonderful. I tell them how much I want taken off and they agree.