My mom, who is 83 and has had CHF for years, periodically develops diuretic resistance.
After increasing dosages of Lasisx, her cardiologist switched Mom to Bumex 2x daily about 6 months ago. Then the Bumex dose was doubled about 2 months ago. Last weekend Mom went to ER with a massive fluid overload and cellulitis on one leg. She was discharged yesterday and is back at AL.
Her cardiologist switched Mom’s Rx to Torsemide 2x daily but she also now needs to visit outpatient services once a week for a 3mg Bumex IV infusion.
Outpatient services already told me Mom will receive the IV, use the bathroom, go to the elevator bank, use the bathroom, take the elevator down to the lobby, use the bathroom in the lobby, then hope the car ride back to AL is quick and she doesn’t have an accident. It’s also prudent to put down pads on the car seat. And she needs to plan on being near a bathroom for the rest of that day.
Anyone have experience with a LO also receiving a diuretic infusion? Any tips to pass along?
Now, my mom was 86 years old. There was no way she would have qualified for a transplant, and even if she had, she would have refused it. But the doctor swore to her that this drug would greatly improve her quality of life.
Instead, it was nothing but problems. First, I had to be around all of the time, because if the alarm started to go off on the pump, I had to troubleshoot what was wrong. The medication had to be changed out daily, as well as the batteries. And the very worst thing was, every time my mother got up to walk around, she managed to "hog tie" herself to her walker with the IV lines. All of this would have been bearable if the medication had lived up to its billing; but it really didn't make her feel any better.
I told my mother it was within her rights to tell her doctor she had had enough and didn't want any more intervention like that; but those words had to come from HER, not me. So, she told the doctor at her next appointment she was through with the treatment.
I understand the diuretic resistance. Are mom's bathroom issues only right after a treatment, or are they ongoing? And is it affecting her quality of life greatly? How is mom doing overall with her diagnosis of CHF? Is she someone who wants to hold on and fight for as long as she possibly can, using any means necessary, or is she more like my mom who told me she was "tired of being tired" and was ready to go into hospice care?
Ironically, after mom went into hospice and they discontinued all of the diuretics, she actually did much better with the fluid retention. Her legs shrank down to practically her pre-CHF size, and she didn't seem to be collecting fluid around her heart or her lungs, which I found to be so bizarre.
If you feel like mom is getting to a point where she feels the treatment is causing her more misery than the disease, it's ok to have a frank discussion with her about what she wants. Sometimes, our loved ones continue to fight because they can't bear to tell us they're ready to let go; I think that was my mom, near the end. She was as relieved to go into hospice as I had ever seen her with any decisions she had made over her lifetime.
I am sorry for you and your mom having to go through this.
As for quality of life, she goes through 6-8 pullups a day due to "accidents" and she probably changes pants 1x daily due to "leaks."
She says she'll do whatever the doc orders because "otherwise I'll check out." She often says "I could live another 10 years." I highly doubt that but honestly, the thought scares me.
I should add that while Mom can transition ok on her own, she does use a wheelchair so the combination of mobility challenges and heavy doses of diuretic creates more problems.
She went into hospice right after.
I think this is going to become more and more commonplace. I imagine it is way cheaper to have the patient do the drip at home and just have one "on call" person in case there is a problem with the pump, rather than hospitalization, or even an IV administered at an infusion location.
I just saw Mom briefly. She says after the Bumex infusion yesterday, she made about the usual number of trips to the bathroom. Mom also weighs herself daily to keep a log for the cardiologist. Her weight today is the same as yesterday, so no fluid loss.
When we see the cardiology APN in two weeks we’ll need to discuss whether the infusions are worth continuing.
But she goes through 6-8 a day already due to accidents.
Now she has changed from Bumex to a stronger Torsemide as well.
Mom had her first IV infusion and I got her back to AL with no accidents, which was the good news. Then she said she went to the bathroom about every 30 minutes all afternoon.
However, even with 3mg Bumex, she only lost a couple pounds of water weight.
In the meantime, the cardiologist’s office has called, and the nurse says the doc “highly recommends” twice weekly infusions due to her diuretic resistance. Mom is thinking about that but isn’t sure she want to go that often since the whole day is trying.
We meet with Mom’s cardiology APN next week for a check in, followed by another IV infusion.
I asked if, considering Mom’s reduced refractory and the need for the infusion, she is still a HF Stage 3. The APN replied “Yes but she’s real close to Stage 4.”
However, Mom’s got a lot of spunk so the APN says she can keep receiving the IV each week as long as she wants. Hopefully it prevents another massive fluid overload and subsequent hospitalization.
You are supporting your mom fully in her decisions, and while she's competent to choose to make this fight it is her choice to make it. I sure am wishing you luck and thanks for this update.
I am praying that she doesn't have anymore emergency situations and can totter along until it is her time to leave her old worn out body.
Remember to take care of you too!
Mom now receives 40mg Torsemide 2x daily and the Bumex infusion 2x each week. Her weight has been constant with no loss, and her legs are still very swollen.
I questioned whether the infusion is working since there is no weight loss and corresponding reduced swelling. The cardiologist replied that those probably will not happen at this point however the infusion has kept Mom from being admitted with a massive fluid overload.
We go back to see the APN next week.
Thanks all, for posting your experience. I appreciate it.
Plus, Mom doesn't seem to grasp the seriousness/and consequences.
She just says "OK, I'll do what they tell me" and then shrugs it off.