Heart failure affects your whole body into your soul. It will leave you a shell of your former self, and you have to work your ass off to even be that. It makes your existence feel static in a world constantly flowing. No matter how well you explain things, It feels like no one around you understands- you feel alone. Simple human pleasures become a detriment, and you are left behind as the party goes on without you.
About me
I have Hypertrophic Cardiomyopathy with primarily right sided heart failure. I’ve been struggling for most of my 20s to understand my health, and what to do about it. At my worst I’ve weighed 180lbs after pericarditis; I starved myself for two weeks trying to lose weight; I didn’t want to be fat. I spent years telling bad doctors about my weight; explaining in great detail how no matter how hard I starve myself, I still look fat and feel bloated. They brushed me aside and handed me the fod map. Starving myself; going to extremes; and seeing no results- I was going insane; nothing made sense to me. It wasn’t until I was dying that it was all explained to me. Heart failure. From there I struggled to keep my weight down; it just became normal that I felt horrid all the time. I weighed 165lbs on average, and would drink daily. I tried to avoid sodium, but there wasn’t much effort or understanding. I spent years living like that until I had enough, so I went to get help. I managed to get down to 150lbs, but from there it was a stand still. I had to spend ten days in the hospital being pumped full of diuretics to get down to 142lbs, my dry weight. From there I felt healthy and fit; my tummy was flat and I felt good about myself. Now I struggle in a different way, as the fear of losing this overwhelms me to tears.
Here are all the things you need to consider when it comes to managing right sided heart failure. Right sided heart failure isn’t as common, and it’s even rarer for younger people- there is limited information out there. The purpose of this article is to give you a chance at helping yourself without making years of mistakes like I have.
Edema
This is the bane of your existence; it is what makes you feel terrible and look disgusting. It is the bloat from excess fluid that your heart is incapable of pumping. With left sided heart failure it goes into the lungs and feet- not that big of a deal. But with right sided HF: it goes straight to the abdomen, where it bogs you down physically and makes you look fat. This absolutely fucking sucks, as it will drain you both physically and mentally. This fluid is around your organs, and it squashes them, causing them to have to work harder. It makes you feel winded easily, and is that feeling of pressure when walking hard. This is what you need to remove from your body to feel better. You cannot just remove it by sweating, as it will still be there taunting you. You need hard diuretics.
Diuretics
This is what is going to save you; do not believe that some holistic natural bullshit is going to make a difference. Unless you starve and dehydrate yourself for days, you will not lose the water weight. You are not smarter or clever for having plans; you will fail. You need to take this, and sometimes they don’t work. If they don’t work you need to get IV injections non stop until you are dry, which could involve being in the hospital for days. Don’t fuck around with this; you have to make this work, and sometimes it cannot be done alone. The main two you will no doubt be taking is Spironolactone and Lasix. Ideally you want to take them consistently, and have them working throughout the day. You can take the Lasix subliminally for better effect- put them under the tongue. After taking the medication you should lay down; lasix works dramatically better at rest. It will take time to absorb- however.
The problem with diuretics is electrolyte balance and kidney function. You upset the potassium/sodium/water balance, and you have your whole body struggle because of it. You want to have consistent blood work to ensure your electrolytes are okay, and the creatinine levels are not high.
The result you are hoping for is increased urination.
Pissing
This is what you want; you want to be peeing out more than you put in until you are at your dry weight. If this is not happening, then something is wrong- you need to tell your doctor if it isn’t working. Ideally you would want to measure how much you pee in millilitres, but we all know that's kind of unrealistic- but for now, just do it; you need to get to dry weight. Piss in a measuring cup, or get one specifically for a toilet seat; I don't care so long as you are recording numbers. You need to weigh yourself every morning and night to see your progress; this data is vital to your well being.
You need to drink water to survive, so whenever you to piss you should take a small sip or two if you feel dehydrated. You need water, but you don’t want too much water.
Water Intake
You need to get a litre water bottle and only use that throughout the day. Get one with measurements on it, that way you can add or subtract as needed for accurate results. You have to make your water last, so you need to think about how much you are drinking and when. You want to consume around 1 litre to 1.5 litres of water a day. The more water you consume, the harder your heart has to work, and the result is more fluid backing up. This will cause a snowball effect that will make it harder for diuretics to absorb because of the edema. Your kidneys will have to work harder with less fluid, so be careful not to dehydrate yourself. If you are sweating, or have had diarrhea, you need to replace those fluids, else your kidneys become overworked. If you feel thirsty you can solve this problem by swishing water in your mouth; that will remove thirst, or gurgle water in your throat until you feel less dry. It is important that you keep up with oral hygiene, as bacteria creates the feeling of thirst. Drink your water cold, and add lemon and mint to feel more refreshed. Avoid spicy foods, or anything that will dry out your mouth. Get some hydrating mouthwash and use that when needed. When considering your fluid intake, you also need to consider the foods you consume.
Diet
You get a lot of water from the foods you eat, which creates a lot of problems for you. Ideally, you want to eat food that isn’t just liquid, and has no salt in it. Nuts are rather dry, and make you feel thirsty, so you want to be careful with what will drive you towards thirst. Salads and fruits have a lot of liquid in them; most are 80%~ liquid, so if 1 gram = 1ml, you can get an idea of how much fluid you are getting. Just, have a consistent diet- please. You don’t want to overeat, cause that will put more strain on your heart, so consume small meals throughout the day. If you are at a dry weight, you will notice you have no appetite, so this shouldn’t be too difficult. The reason you have no appetite is because any bit of food or water consumed puts immediate strain on your heart- and physically and mentally you do not want that, so you just eat less. As long as you have fat on your body you are fine, just don’t go too underweight. Try to eat vegan, and make sure the foods you are getting have no sodium in them; sodium is the a crucial thing you need to avoid.
Sodium
Don’t. Just don’t consume any of it. Avoid it at all costs, because indirectly you will end up with enough sodium in your body. This is not something you ever need to worry about getting any amount of; it is useless to you. Do not use potassium salt to replace salt- you are not clever. You will upset the fragile electrolyte balance and make your kidney struggle more. Just don’t consume sodium. It will hinder progress and put you back a few days. This will also create another problem, which is sodium tolerance. If you have a very low sodium diet for long enough, any bit of sodium intake will be noticeable. Your mouth will burn, and you will feel thirsty so much easier. A single slice of pizza can have up to 400mg of sodium; that bread bun can have over 500mg of sodium; that salad dressing is mostly pickle juice; you cannot fuck around with this. Low sodium diet is under 300mg- do not exceed that.
You cannot trust anyone with this; when you go to a resturaunt and ask, “How much sodium is in this?” They will have no idea what you are talking about; they have a completely different perspective and understanding of salt than you do. They will think about table salt added, and then say it’s “probebly fine” and remove a pickle. If their fries come frozen, they are loaded with sodium; if it’s chicken, it has no doubt been pumped full of brine; if it’s a salad, the dressing will loaded; you cannot rely on anyone’s word. Even nutrition labels can be incorrect; even past 20%. You know what is safe, and if you are unsure, just don’t eat it. If it tastes salty, then it no doubt is. Among other things you shouldn’t consume, do not consume alcohol.
Alcohol
Don’t. As someone who is an alcoholic, it is not worth it. Binge drinking 350ml of vodka daily at 170 lbs for years will keep you stuck being bloated and feeling shitty. I am at 142lbs now from water weight loss, and I can say that even the smallest amount of booze will ruin your progress. You will become thirsty, you will gain water weight, and you will put more work on your heart and kidneys. It will ruin your electrolyte balance, causing even more problems. It is extremely destructive to your well being- don’t do it. Stop drinking.
Willpower
Your life will become a lot better when you have lost all the water weight, but then you will be faced with two additional problems: having to maintain it, and the fear of losing it. There is a lot you need to do everyday for the rest of your existence to ensure you stay healthy; you do not want to get sick again… you don’t want to end up how you’ve been living for years. It’s hard, and there is no way to make it easier aside from familiar consistency. You will have have downs, and your health will get worse over time, but at least you have now to enjoy it without feeling too decrepit. Take this time in good health to better understand yourself and your interests. Make something of yourself while there is still something there.
Overall, just do the following in a day forever and try not to kill yourself:
Get a good night of sleep- sleep in if you can
Weigh yourself when you wake up
Take your medication consistently and rest after taking them
Eat small meals throughout the day while avoiding sodium
Drink only 1-1.5L of water, and be sure to consume more if sweating
Get some light exercise (yoga, walking, body workouts)
Rest, no stress
Weigh yourself before bed
Refill water bottle for tomorrow
Get a good night of sleep
Have a schedule like this:
Date | AM | PM | ML
20210913 | 142.2 | 143.4 | 900
20210914 | 141.6 | 143.2 | 1100
You need to keep this as convenient to you as possible. Have it physically in a notebook, or maybe something on your phone. You need to do this daily; if you slip away from this note taking you will see yourself fail. If you want to make it even more optimized, add another column for the amount you have pissed in a day. It also helps to look at the pulse on your neck. If you see it stretching up high, then there is a problem; it should be visible only at the bottom.
You are not in this position because you ate bacon and drank beer all your life. This is not a boomer problem.
thx this is fascinating and insightful, even for a healthy heart person such as myself.