Is Anyone Else Here on a Liquid Restriction Due To CHF?

[+ LIguy]

In addition to everything else I was also diagnosed wirh Congestive Heart Failure while in a physical rehab facility this past year.   I'm home now but I'm only allowed 1-1.5 liters of liquids a day and that includes soups,ice cream etc  I'm finding it very tough.  I take bumetanide as a diuretic as lasix no longer works for me.  If any of you do how do you deal with it?

[shadowcatzxxx]

I ain't no MD, but my mom has trouble with extra fluid with risk of CHF, and for her at least, the problem is not total amount of liquid ingested, but total SALT intake ... which causes water retention. If your doc hasn't already eliminated salt as a causew (or co-variable) in your problem, ask him/her to do so. Good luck! Take care of yourself!

[Rudynate]

4 hours ago, LIguy said:

In addition to everything else I was also diagnosed wirh Congestive Heart Failure while in a physical rehab facility this past year.   I'm home now but I'm only allowed 1-1.5 liters of liquids a day and that includes soups,ice cream etc  I'm finding it very tough.  I take bumetanide as a diuretic as lasix no longer works for me.  If any of you do how do you deal with it?

My dad had CHF and end-stage kidney disease - He was on a VERY restricted regimen.  He wasn't allowed even sips of water - just sucking on ice chips.  He just wasn't up to transitioning from a live-to-eat guy to a eat-to-live guy, so all the changes were very difficult for him.

I am on lifetime anti-coagulation for a clotting disorder.  For 13 or 14 years I took coumadin, which is a very difficult drug to take - there are dietary restrictions and you have to have regular blood testing.  At first the changes were difficult, but as I integrated them, it became easier, and seeing how compliant I could be became a small source of satisfaction.   I got so that I only needed to go into the lab for testing once a month.

[+ LIguy]

thanks for your responses....i have been on coumadin for many years since having a mechanical aortic valve replaced.....several years ago while a patient in North Shore Hospital the pharmacy gave me an incredible booklet outlining many green vegetables and how much I could be allowed if cooked or raw on a daily basis....but there are no subs for water and I just try each day....lately has been tough and I start gaining water weight and then the docs have to give me a special med that accelerates the diuretics....right now if you put a nice thick juice ribsteak next to a glass of ice water and say choose then i will choose the ice water.

[Guest]

On 1/29/2022 at 7:52 AM, LIguy said:

In addition to everything else I was also diagnosed wirh Congestive Heart Failure while in a physical rehab facility this past year.   I'm home now but I'm only allowed 1-1.5 liters of liquids a day and that includes soups, ice cream etc  I'm finding it very tough.  I take bumetanide as a diuretic as lasix no longer works for me.  If any of you do how do you deal with it?

I'm sorry you have to deal with this. It's not easy, for sure, as diuresis makes you feel dry (because you are), so you may feel thirsty much of the time. Bumetanide works by the same mechanism as Lasix (furosemide), so if one works, the other will as well. However, the duration of action of Lasix is very brief, so it really needs to be taken at least 2, possibly 3 times a day to be effective. Most physicians prefer bumetanide or torsemide because they can be dosed once a day. The one comment I would make about your posting is that I strongly recommend you avoid soups, as they are usually loaded with sodium, which will make you very thirsty and cause fluid retention unless you are able to resist the extreme thirst which the sodium load produces. 

Essentially, I would avoid almost anything in cans, as they are almost universally packed with sodium. If you haven't already, you really should consult with a dietician. A dietician certainly should have advised avoiding soups and other canned foods. Soups for someone with CHF are kind of like a form of torture for them. 

Diuretics work by dumping sodium with water into the urine. If you drink sodium-less water ("free water") to compensate for the water loss, you will develop low sodium concentrations in your blood (hyponatremia), which can lead to swelling of the brain. This can result in headaches (obviously), nausea, and weakness. In extreme cases, there can be seizures, coma, or worse (not before other symptoms appear first, however). 

[CJK]

I have to limit my liquid intake and have eliminated most salt. i worked with a dietician who put the focus on what i could eat and drink, not what needed to be eliminated. Because of kidney/potassium issues, whole grains, green leafy vegetables, many fruits, beans, wheat and potatoes are no longer part of my meal mix. I have learned cabbage is incredibly versatile, fish and chicken are good broiled with garlic and grits are great. Oddly, corn is no good but grits are. 

Most importantly, I get weekly blood and urine tests and measure my "ins and outs" so we can make adjustments on the fly. A couple weeks ago I was dehydrated, so we got rid of the lasix (80 mg/day) and the metolazone (2.5 mg/day) for a bit and I am no longer able to take Tums. Subsequently I gained 30 lbs in two weeks and cannot wear shoes because my feet are so big, se we have added those back. 

[CJK]

On 3/24/2022 at 11:08 PM, CJK said:

...A couple weeks ago I was dehydrated, so we got rid of the lasix (80 mg/day) and the metolazone (2.5 mg/day) for a bit and I am no longer able to take Tums. Subsequently I gained 30 lbs in two weeks and cannot wear shoes because my feet are so big, se we have added those back. 

With a nod to the late Paul Harvey, here is the rest of the story...

The weight gain continued until I gained 61 lbs in less than one month. Sitting, standing and laying down were problematic. My arms, legs and torso were so swollen that my skin was ripping apart and oozing liquid. I developed wounds that had to be treated. The pressure from the liquid caused heart issues (a PVC) and my kidneys were unable to work properly. The worst: my scrotum swelled to the size of a melon. It hurt and made my shaft pretty much disappear.

I just got out of the hospital the day before yesterday after three weeks of getting both diuretics and heart medication dripped intravenously around the clock. The docs said had I not been treated I would have had another heart attack within a few days. We were able to pump out about fifty pounds. so far The PVC disappeared. The wounds are being treated and some are already gone. I am on new meds. 

Bottom line: The liquid restriction is hard to abide, but the alternative is much worse. There is not much you can do but be vigilant and stick to the restriction, I cannot even begin to tell you how much the swollen scrotum hurts. 

[+ LIguy]

On 3/25/2022 at 1:08 AM, CJK said:

I have to limit my liquid intake and have eliminated most salt. i worked with a dietician who put the focus on what i could eat and drink, not what needed to be eliminated. Because of kidney/potassium issues, whole grains, green leafy vegetables, many fruits, beans, wheat and potatoes are no longer part of my meal mix. I have learned cabbage is incredibly versatile, fish and chicken are good broiled with garlic and grits are great. Oddly, corn is no good but grits are. 

Most importantly, I get weekly blood and urine tests and measure my "ins and outs" so we can make adjustments on the fly. A couple weeks ago I was dehydrated, so we got rid of the lasix (80 mg/day) and the metolazone (2.5 mg/day) for a bit and I am no longer able to take Tums. Subsequently I gained 30 lbs in two weeks and cannot wear shoes because my feet are so big, se we have added those back. 

the docs give me a few metolazone 5mgs to use when my weight goes more than 8 pounds but i just take 1 an hour before i take my bumentanide.....I just started another round of Rituxan infusion for lymphoma and that put on 6 pounds overnight....i keep low sudium but try to eat a varied diet.

[CJK]

On 5/10/2022 at 8:05 AM, LIguy said:

the docs give me a few metolazone 5mgs to use when my weight goes more than 8 pounds but i just take 1 an hour before i take my bumentanide.....I just started another round of Rituxan infusion for lymphoma and that put on 6 pounds overnight....i keep low sudium but try to eat a varied diet.

I take metolazone, too.

Unfortunately, I was out of the hospital for three weeks, during which time the diuretics stopped working and I put on twenty pounds in a few days. The wounds on my legs got worse, too. I went back in the hospital on June 6th. They put me on intravenous Lasix and I gained eight more pounds in four days. The diuretics have been changed a few times, (Diuril injections, torsemide injections and pills) It has been almost six weeks, during which time the wounds got infected twice, I was in a wheelchair for a week, and they drained over 70 pounds out. My kidneys got worse from the diuretics, so I have been off of them for a few days, going back on them tomorrow. 

Once i am out of here I will be getting blood tests twice a week so that we can hopefully catch the issues early and keep the huge weight gain from happening. 

And by the numbers. over the past three months my weight has gone up and down a few times, with my highest weight 281 lbs and my present weight 188 lbs with a little more water still needing to drain. The docs keep saying because it is water weight it will not have the same impact as gaining and losing "real" weight, but I keep remembering that it was the extreme weight fluctuations that killed Luther Vandross. 

[+ LIguy]

I have to weigh myself every morning to try and avoid trips to the hopspital....I have the cardiologists NP cell phone to call if weigh rising....I too gained 30 pounds in 5 says when the lasix stopped working and was put in the hospital for lasix iv.....thats when I was changed to bumentanide.....ask the doctor about Farxiga to help with kidneys.....I take it and the docs have been pleased with blood work.

[CJK]

On 7/16/2022 at 11:43 AM, LIguy said:

....thats when I was changed to bumentanide.....ask the doctor about Farxiga to help with kidneys.....I take it and the docs have been pleased with blood work.

They switched me to bumentanide a couple days ago. I have done Farxiga but had to get off it because it was causing some other issue. I do not remember what at this point, The other day we discovered the infections on the leg wounds are present internally. Over the past two days I have had various MRIs and tests. Tomorrow I am having a colonoscopy to see if the infection is there. Meantime, the leg wounds keep multiplying. This all stinks!

[+ ButchAtl]

On 7/16/2022 at 1:43 PM, LIguy said:

ask the doctor about Farxiga to help with kidneys.....I take it and the docs have been pleased with blood work.

Fortunately, I don't have the problem, but seeing the above comment reminded me of the TV commericals I have seen for Farxiga.  The side effects they list seem potentially worse than the problem.  ( But what do i know, I'm not a doctor!) 

[CJK]

On 7/27/2022 at 8:12 AM, ButchAtl said:

Fortunately, I don't have the problem, but seeing the above comment reminded me of the TV commericals I have seen for Farxiga.  The side effects they list seem potentially worse than the problem.  ( But what do i know, I'm not a doctor!) 

I was on Trulicity for a few months. In its TV commercials the company brags that it is not a weight loss drug most users lose about ten pounds. Based on my experience, the weight loss makes sense, as I would spend three days uncontrollably vomiting each time I injected the drug.