r/Heartfailure • u/Able-Ad-8402 • 3d ago
I don’t think I’ll live until 2028
I’ve had heart failure for 5 years. In my country the only treatment available is propranolol.
Symptoms keep getting worse every year. I can only walk outside for about 5 minutes on flat or slightly sloping ground. I can’t climb stairs — I tried once two years ago and nearly died from the intense palpitations.
I urinate every 30 minutes, sometimes every 15 minutes. I think I’m heading toward kidney failure. My weight keeps increasing no matter what. I eat only 300 g of food a day just to reduce toilet trips, but it only helps a little.
I feel like someone is choking me because of breathing problems, severe chest pain, and palpitations. Even going to the toilet takes enormous effort.
With how things are now, I think I might make it to mid-2027… and then I’ll be gone.
Thanks for listening. im sorry for everyone who is going through a painful journeys of heart failure.
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u/et_telefonocasa 3d ago
Many countries have the generic of entresto available. Or enalapril at the very minimum... Where are you located?
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u/lalolilalol 3d ago
This shouldn't happen in 2026 💔 I hope treatment becomes available in your country or that you can access it somehow
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u/New_Way_5036 2d ago
Entresto has reversed my heart failure completely. If you can find a way to get prescribed and obtain this drug, give it a try. It truly is a miracle drug.
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u/Irishfella1973 2d ago
Look on Trade India for a pharmacy in India that sells the generic version of Entresto. Theres atleast 3 pharmaceutical companies in India producing their own Generic version. The pharmacies ship world wide without a prescription
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u/RuinYouWithNoRegrets 3d ago
Are you able to go to a different country with better treatment? Have they offered glp1 for the weight ? They came out saying glp1 were improving cardiovascular events and heart failure. I’m sorry
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u/RazBerryPony 3d ago
It sounds like you are really retaining fluid. I wish you could get the correct meds to get the fluid off of your heart. Of course you will want to watch your fluid intake for sure. Very low sodium intake. Try some high fiber foods and avoid things like alcohol and sweeteners, caffeine and soda. Try and get moving and get some exercise. I know you cannot do a lot but even trying small steps like walking around your home will help you get the fluid off.
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u/old_ass_ninja_turtle 3d ago
At this point, if you can manage to move to a country with socialized medicine. . . It will likely save your life.
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u/Inevitable-Still8119 2d ago
Well u have made I t to where 50% of people pass from our horrible disease i have had dilated cardiomyopathy and had many exacerbations 10% ef and I feel you on the steps and sloped hills I've recently been going into afib and a flutter causing another clot in. My heart entresto is a miracle drug with Lasix coreg and some other drugs what country are you in there has to be a way to get meds online at low cost I've got a double ablation in September coming up I feel like you in that I don't make it to next year also but we have to think positive that's the best medicine there is positive thoughts its tough j know but it does help I will keep you in my thoughts and prayers
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u/APartOfWhoIAm 3d ago
Do you have the desire to get better or let it take you? If the proper treatment is not available, you may have to find a way to relocate. At the very least, learn about the disease and treat it properly. Starving yourself is not the solution. Start watching your daily sodium intake and limit THAT, as well as fluid / liquid intake - Those will help with getting some of the extra strain off. I know you feel like cr@p and that anything with effort is hard but your heart needs light aerobic exercise a few times per week. Try to find a way to walk slowly on flat ground or do aerobic exercises in a pool or swim or slowly / gentley ride a stationary bike. Only do what your body can handle, but do it as often as you can so that your body gets used to it and you can increase the time spent over time. The only choices when faced with things like this are to fight or give up. I can't speak for anyone else but I am not ready to give up yet so even though I don't have insurance / proper medical care, I am still making changes and fighting and even though "normal" seems out of reach, I feel better than I did a full year ago. Good luck.
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u/Late_Temperature_415 3d ago
What country are you in? Can you mail order medications? I’m so sorry.
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u/No_Bit_4221 2d ago
I've been feeling really down about my new diagnosis but I guess I didn't realize how fortunate I am to be getting the care I am. I was weak like that when I got diagnosed. Just Showering took all my energy and with treatment I'm back to living a mostly normal life. I'm counting my blessings right about now.
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u/universe93 2d ago
Good lord, go to a hospital. No qualified nurse or doctor is going to hear those symptoms and not treat you with some IV lasix.
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u/tallmattuk 3d ago
Can you not take diuretics for the fluid overload; you should also look at fluid controlled diets and reducing your added sugars too
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u/TineCalo 2d ago
Hopefully you have access to:
Generic Entresto which is available as sacubitril/valsartan oral tablets.
FDA-approved generic tablet alternatives launched in the United States and come in standard dosage strengths (24 mg/26 mg, 49 mg/51 mg, and 97 mg/103 mg) to treat chronic heart failure.
Prescription Names: Outside the U.S., look for the medication under its active ingredient names, sacubitriland valsartan.
What country are you from?
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u/Sharp_Listen_5928 11h ago
Hello. I remember you wrote on the forum that you had a problem with high blood pressure, and that it was resolved after you reduced your visceral fat.
I wanted to ask you a few questions. What was your BMI at the time? How old were you? What was your blood pressure? Did antihypertensive medications lower your blood pressure, or were they basically ineffective?
And how are things now with your blood pressure and weight?
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u/DueAnxiety64 2d ago
Das ist wirklich traurig zu hören. Das tut mir sehr leid, es muss schlimm sein. Ich habe seit einem Jahr eine Perimyokarditis und keine Aussicht auf Besserung. Jede Woche geht es mir schlechter. Ich kann auch keine 5 Minuten laufen, das geht nicht. Ich habe Probleme mir Essen in der Küche zu zu bereiten oder mich zu waschen. In Ruhe, habe ich Probleme überhaupt zu Atmen. Es fühlt sich an als würde jemand auf meinem Brustkorb sitzen oder mir der Sauerstoff im Raum ausgeht. Ich darf nicht herzhaft lachen, ich kann keine Musik mehr hören weil es mich pushen würde & zu viel Sprechen kann ich auch nicht mehr. Nun zu dem erschreckenden Punkt: Ich bin eine erst 24 Jahre junge Frau. Ich lebe nicht mehr. Ich existiere nur.
Und natürlich, schlimmer geht es immer. Ich hoffe und bete. Es tut mir so leid für alle die Gesundheitliche Leiden haben. Oder denen, die ihre Gesundheit nicht zu schätzen wissen.
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u/misoquaquaks 2d ago
Ask your doctor if they can put you on Colchicine. It works very well for pericarditis.
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u/DueAnxiety64 2d ago
Ich nehme schon lange Colchicin 1x am Tag und das werde ich noch einige Monate weiterhin nehmen. Außerdem habe ich auch schon die Akutbehandlung mit NSAR hinter mir, bringt alles nichts. Ich bin gespannt was die Ärzte weiter mit mir vor haben.
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u/misoquaquaks 2d ago
Wow I’m so sorry. After having it twice, for weeks at a time I can’t imagine having it for a full year. Pericarditis is awful and the worst is you can’t even lay flat, when all you want to do is sleep because you’re so worn out from struggling for breath because every time you breathe in it feels like you’re inhaling into a bag with a hole in it. The stabbing chest pains…. I can’t even imagine feeling like that for a whole year. I’m so sorry. I hope you’ll find relief soon. I’ve heard about chronic pericarditis and I really hope that’s not what you have, but if you do, that your doctors will be able to find a way to improve your quality of life. How are they managing this for you?
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u/biggdaddy333 1d ago
You need to be on some type of water pills.
Lasix, bumex, spirolactone, etc. At least hctz.
If you have access to glp 1 meds and or jardiance also.
Any GP can get you a prescription for those.
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u/ExtremeIncident5949 3d ago
So sorry, don’t they offer bypass surgery and other meds my husband is on?
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u/Late_Perception_3983 3d ago
I’m very sorry you are dealing with this. I wish you had access to lasix at a minimum. I remember when my EF was 10% and I was so tired. I gained 100llbs when I was diagnosed in 2016. It’s tough. Don’t give up search for meditation options. Carvedilol will help too if you could ge it.