Feeling sick after HD (advice for my dad)

Hello! My dad (72) has been on HD for two years* now. Lately, he often finds that his blood pressure drops and he feels sick after he's returned home from dialysis, even if he feels okay during treatment. He says the clinic staff watches his BP closely as well as the amount of fluid they're removing (he doesn't retain much, if any, between treatments). It's also my understanding that the clinicians are happy with his numbers and believe he is tolerating dialysis well in general. Still, he deals with this sickness two or three afternoons a week, whereas he seldom experienced it during the first year or so of treatment. Is there any advice I can pass along to him about what might be contributing or what could be done to address it? He generally feels better after resting and eating a meal, but I know the symptoms are discouraging to him.

*He was on PD for a few months last year, and overall, I know that's what he'd prefer. But last summer he got a MRSA infection and was hospitalized for weeks dealing with that, and last fall my mom (his caregiver) passed away, so he's been back on HD since.

[bumblebee_tuna]

Make sure he is not anemic, I had a low levels of HGB last couple of months and my blood pressure went low. It's back up after getting an EPO shot. Did he lose some blood during treatment maybe, I'm thinking clotting or something like that, sometimes they don't return all the blood.

[Hidden in reply to bumblebee_tuna]

Hi bumblebee_tuna, do you get HD and if so how is your EPO administered? My father gets Mircera through his HD via IV and drug is failing. His Hgb drops every 2-3 weeks and needs transfusions. HD just started for the last 3 months. When he was on PD and getting Mircera Subq he wasn’t anemic like this. Nephrologist can’t figure out what’s happening and now he’s referred to hematologist. Any advice is appreciated. Thank you.

[bumblebee_tuna in reply to Hidden]

No, I'm on PD and get a shot every few months.

[Shamara]

Does he still urinate at all? I wonder if they are taking off too much fluid? If so, they can set the machine to do just a rinse. Does his Nephrologist know this is going on? I’m sorry to hear this is happening to your dad.

[Bassetmommer]

You really need to let the Nephrologist know what is going on. He may need to change the prescription. They say his numbers are good...but do you know or does he know what they are and what they mean. I discovered that the centers have numbers they have to meet, whether the patient needs to have that much dialysis or not. For example, more time and more fluid removal. If he has been on dialysis for a while, his levels may have improved... may have gotten worse but they are meeting numbers, which may not be his needs.

It sounds like they are taking too much off... and it is not just fluids, but the electrolytes associated with fluid removal. I do home hemo. I was not taking any fluids off for about four months. The machine, however, was automictically taking 400 ML off as part of the process. Over time, I was turning myself into a raisin. I had horrible cramps, but only at night and I felt terrible. Just lethargic and, well it is hard to describe, empty. Drinking water afterwards was not doing anything. I needed to replace the electrolytes as well as salt. So now I am giving myself saline during the treatment. Made all the difference. The fact that your Dad feels better after eating suggests that he needs to rebalance his prescription.

[bestmom247]

Your dad is in the same situation I was in. He must become proactive. I was going 3 times a week for 2.5 hours and began actually getting sick (vomiting and diarrhea) towards the end of dialyzing. Bloodwork was great each month. I still urinate quire frequently. I then asked my nephrologist to cut me back to 2 times a week and he refused. So I made the choice to go AMA and be temporarily removed from transplant list and began going twice a week. After almost two months of being AMA (bloodwork still great), he agreed that I should only be going twice a week. HE KNLOWS HIS BODY BETTER THAN ANYONE. If the Center and his Nephrologist won't listen then he needs to take matters in his own hands. There shuld be no reason why they do not re turn ALL of his blood. Dialysis is one of the biggest money making deals around. I have medicare and tricare for life and they pay through the nose for this. I can only see a doctor (not even mine) at the clinic and he spends less than two minutes and bills medicare $800. He never answers any questions. He tells me he will speak with MY Doctor and get back to me, but never does. I have been on dialysis since 10/2020, so I know how my body reacts to the dialysis. He should eat healthy, watch his numbers and make his own decisions if his nephrologist won't listen to him. Don't be afraid of you doctor or center - what can they do? repo your bad kidneys????????

[horsie63 in reply to bestmom247]

The only time I've felt terrible is when they take to much off. I learned what the screens on the machine mean and I watch them and the nurses closely. My nurses/techs were happy to answer all my questions. Does he know his dry weight perhaps it needs to be increased?

I dislike the "drive by doctors". They come in go around to every one spend like you said 2 min and don't even listen. I researched everything.

[bestmom247 in reply to horsie63]

Every patient should do the research. I was a c ash cow for many years until i opened up my computer and began asking questions. Doctors hate being questioned.

[horsie63 in reply to bestmom247]

Don't they lol. I try to be respectful but I'm not there to be their practice dummy. I research EVERY thing. I'm an auditor so "trust but verify" is in my DNA. I question every thing I'm told. I will not drink the Koolaid.

[bestmom247 in reply to horsie63]

Keep up- the good work. Someone has to w atach the fox whenit is in the hen house.

[LFFighter in reply to bestmom247]

Bravo, bestmom247. “fox in the hen house”. 😄 I like that!

[bestmom247 in reply to LFFighter]

It may sound silly, but it is very true and very sad. I am the only one in the dialysis center that has my best interest at heart. I have to take care of ME!!!!!

[LFFighter in reply to bestmom247]

I agree with you absolutely, bestmom. Sending you hugs and warm thoughts for your journey. 🤗

[Hidden in reply to horsie63]

After reading the comments here, I need to ask about his dry weight. It sounds like you may be right that it needs to be increased.

Thank you for responding!

[Dineshwaran]

After hd your BP will drop and so does all your levels. You need to have good food and good rest after hd. Normally if your dry weights is not achievable this will happen until you fixed your weight. Reducing more water can cause hypo. I experienced this situation. Even on my way back after hd my BP dropped while riding a bike. When I woke up I was in ICU due to motorbike crush. It's a terrible experience.

[LFFighter]

Hello, Ms. Agnes. I am 61 yrs old and have been on HHD for almost 3 yrs. I know that if I am not retaining any fluid and have pulled too much, I will become sick to my stomach and become dizzy. Perhaps your Dad’s nephrologist & his team might look at his dry weight to see if it might need adjustment? Best regards and prayers for your Dad.

[Hidden in reply to LFFighter]

Thanks so much for the response and kind thoughts. I think a meeting with his nephrologist could be a good idea. Best to you as well!

[Hidden]

I just wanted to thank everyone who took the time to reply to my post about my dad. I've read and appreciated every comment, even though it's taken me a while to respond. My dad has had some better days recently but still feel sick when he gets home sometimes. I will be keeping everyone's advice in mind and trying to arrange a meeting with his nephrologist (as some noted, it's difficult to get more than two minutes with the one who does rounds at the clinic), asking about his dry weight, etc.

My late mom was the one who did research and advocated for him up until last fall, so this is a steep learning curve, but I want to do all I can for my wonderful dad! Thanks again.

[Reader_72]

Hi AgnesThanks for sharing your father's struggle. May Allah bless him witb good health.

I am no HD since last 8 years, low Bp is the most frequently experienced phenomenon.

Kindly check is there any Bp lowering medicine in use on the day of dialysis?

Lowering the temperature of dialysis machine helps in tackling low Bp.

Raising the foot side during dialysis also helps the condition.

Eat in the first hour of dialysis only.

Best Wishes

Regards