Congestive Heart Failure

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Congestive Heart Failure
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    We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

    We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

    It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

    Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

    I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

    You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

    #Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
    #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether

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    How are you?

    When I’m asked that question, and I’m depressed, as I currently am, I say: “I’m taking air in, and letting it out.” So far the only response I’ve had is laughter. Probably because I use humor yo cope. But when I say that, that’s about the extent of what I can manage to do. And if I’m having an asthma flare, or an episode of congestive heart failure… it’s even more of a struggle…#takingairin

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    Undiagnosed, trying to navigate the healthcare system.

    I've been trying to get answers about what the hell is wrong with me for so long I am starting to lose hope. Growing up my parents thought I was just a hypochondriac. Then when I was able to start going to doctors visits on my own and was diagnosed with #PCOS at the age of 15/16 I finally had proof that some if my symptoms were real.

    I was finally diagnosed with #mitral vavle prolapse at the age of 26. Turns out that I've had it my entire life but no one cought it until just recently. In addition to the mitral valve prolapse I was also diagnosed with #CongestiveHeartFailure #rectocele #vaginismus #lymphadenopathy #BipolarDisorder #Hypertension #Sleep apnea and #PelvicFloorDysfunction .

    I also fit the criteria for a lot of other conditions but I'm having a hard time getting clear answers from my doctors as to wether I do or do not have these other conditions.

    Does anyone else find it difficult to actually get a diagnosis from their doctors? Even when you meet all of the criteria for such diagnosis?

    My current issue is that I'm trying to get in to see a geneticists to get tested for #EhlersDanlosSyndrome and other connective tissue disorders. In order to do so you have to provide a lot of documentation showing why you should be tested for genetic conditions. Part of this documentation would include the conditions that you've been diagnosed with. But since I have not gotten an official diagnosis for many of the conditions I suffer from I don't have a way to include them in the documentation to send to the geneticist and I have been denied an appointment twice now.

    It's like a puzzle. I need my doctors to help identify the missing pieces so that I can go to the geneticist and have them complete the puzzle but I am so tired of having to push and push and push to try and find doctors that are willing to run the tests and not just give up before the missing process are identified.

    Why is the process so difficult? On top of it all I have suffered from #Undiagnosed #ChronicFatigue for the past 8 years and I just don't have the energy to continue fighting. But if I don't continue fighting then I'm only going to continue to decline. It's a never ending loop.

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    I’m new here!

    Hi, my name is deedee42087. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #Anxiety #Fibromyalgia #OCD #congestiveheartfailure#copd#highbloodpressure

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    So suffer from congestive heart failure, depression, PTSD, and epilepsy. Was denied disability, because they would of had to back pay me to 2013. My alimony ran out today, and found out SSI will only pay 800 a month. Our system is so screwed. I have no choice but to work full time, when my Drs advise me not to work at all. UGH

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    Diuretic Medicine will help me live longer, but it will adversely/negatively affect my teeth.

    I went to the doctor Again today - this time to get the results of my thyroid blood test Panel (3 different tests) that my Ear, Nose, and Throat doctor was Supposed to be sending to him. The results have Not been sent yet.

    I showed the General Practitioner doctor today the condition of my feet. He said - that’s a lot of edema. I said thst I had stopped taking my diuretic medicine several years ago because it caused me to have severe leg cramps and because it started me on the process of having the dry mouth symptom which has Really caused my teeth to have a lot of problems.

    What it comes down to is - do I really want to take a chance on developing congestive heart failure or other heart problems by Not taking a daily diuretic pill - or can I take the daily diuretic pill and explain to my dentist Why my teeth keep getting worse? Taking the daily diuretic pill will inevitably lead me to have even Larger dental bills, more crowns, and other dental work.

    But taking the diuretic pill will also reduce the edema All Over my body and may help my weight to go Down as a result of getting rid of so much stored water weight. & Doing that will help my blood pressure to eventually get lower than 162/100.

    The GP doctor also said today that getting my thyroid blood levels reduced/unelevated may help me to lose weight.

    They still have not told me if I have Hashimoto’s disease or not or if (horrible thought!!!) I need to have my thyroid gland or glands removed.

    The GP said Officially that he Is referring me to an endocrinologist. The nurse said that the endocrinology office staff person will call me and give me a choice of locations to go to & that I can tell them that I take cabs and need to have an endocrinologist (if possible) who has an office that is an Affordable distance away by cab.

    Here lately, for me, trying to get healthier is involving more than usual the amount of doctors and more changes in medicine than I used to have.

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    Feeling trapped by pain, no relief options.

    TW: #ChronicPain #Anxiety #SuicidalIdeation #Vent

    I’ve lived with chronic pain all my life. Diagnosed with #ChronicMigraines at 6, #TemporomandibularJointDisorders at 14, #PsoriaticArthritis in all joints at 28, #Fibromyalgia at 29, #PolycysticOvarySyndrome at 30, #Cancer at 39, #ChemotherapyinducedPeripheralNeuropathy at 40. And countless other diagnosis along the way like #Asthma , #Diabetes , #sjogrens , #PosturalOrthostaticTachycardiaSyndrome , #Cardiomyopathy , #CongestiveHeartFailure , #Anemia . All while dealing with #CPTSD , #MajorDepression , #ObsessiveCompulsiveDisorder , #DomesticAbuse , #ChildhoodSexualAbuse , #MedicalTrauma .

    I’ve been in and out of hospital for both the cancer and my heart lately. The bile duct liver cancer is responding to chemo however due to a port that needs replacement and having been in hospital, I’ve not had chemo in a month. So it’ll be starting back up soon. I’m mixed about it, on the one hand what was meant to be palliative had turned out to be curative so that’s amazing. On the other hand the sickness and pain of chemo this time will suck because no meds!

    No meds? Yes, no pain meds or pain management anything aside from “a” Tylenol if I really need it, not the prescription kind. Earlier this month while in hospital for my heart they decided 90% of the meds I was on were “heart toxic”, including my mental health meds and pain meds. So they had me cold turkey all of those and I can’t go back on them because they’re trying to give my heart a chance to improve and heal with the help of heart meds and off the meds that were bad for my heart. As well as lifestyle changes. My ejection fraction is 20-25% since April. They think it stemmed from a virus or infection and usually that heals within 6 months but the meds + weakness from chemo (my chemo meds don’t affect the heart itself) were not allowing it to heal. So now no pain meds, no pain preventing meds. No mental health meds aside from a Xanex to use in emergencies but can’t be mixed with or taken near my heart meds. Which means I can’t ever use it because I take heart meds 3x day.

    Now I’m having pain flares of everything at once because no chemo for a while means my immune system is awake again and overreacting to literally all the things. I know pain, I’ve lived all my life with it and I have a high threshold for it. But I’ve never had to live with it in all its fury and all at once without help for any of it. The full pain with my untreated anxiety has led to almost nightly severe panic attacks at night because the severity of the pain keeps me from being able to sleep. I’m also freaking out at the thought of having to do chemo with no side effect help.

    The intense pain/anxiety combo is throwing me deep in depression again and bringing back all the thoughts of ending things. It’s just so much to deal with at once, losing hope so quickly.

    Thank you for letting me vent & for any support!

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    Blood Pressure Monitor recommendations?

    I think I need a new BP monitor, mine seems to be random lately. I could take it 3 times in a row some days I’ll get the same or close results and other days they vary drastically to where it makes no sense. My blood pressure monitor is an Omron BP760.

    I have to have something accurate as I depend on my BP numbers to determine my meds. I have a low-ish BP but both of my heart meds that I need to hopefully heal the cardiomyopathy also lower BP so if I’m under 90 systolic then I can’t take them. Otherwise I drop dangerously low and have passed out.

    What blood pressure monitor do you find works accurately for you?

    #BloodPressure #CardiovascularDisease #Cardiomyopathy #CongestiveHeartFailure #medicaldevice #healthmonitoring #HeartDisease