Rmp829
  • 15 replies
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Rmp829, July 3,  2019  2:09am EST

Heart Failure 54y/o female EF 20-25% LifeVest

Well, I’ve been reading posts off and on for about a week and I finally figured out how to post my own.  I was diagnosed with Congestive Heart Failure April 1, 2019. I still can’t believe it. My mom was in the hospital with a broken ankle (in 3 places). She also has chf but it’s end stage so they gave her a choice in 2011 to either go into hospice or have and lvad implanted. She chose the latter and is doing very well. However while coming to visit her in the hospital I kept getting short of breath before I could even reach the elevator. Long story short I ended up in the ER of the same hospital. They admitted me, ran lots of tests and after the echo they gave me the bad news. “It’s heart failure”. I asked if he was absolutely certain. But of course he said yes. I guess at this point I’m just sharing my story because I don’t know what else to do. I have so much to say but I don’t want to bore you. But if anyone has tips on dealing with this darn LifeVest I sure would appreciate it!  

Thanks for listening and I will update you guys if there is any interest. 

  • AHAASAKatie
    AHAASAKatie, July 3,  2019  8:49am EST

    Thank you so much for sharing what is happening in your world with us. I look forward to reading what our members have to share. Best Katie

  • nrskim62
    nrskim62, July 9,  2019  12:03am EST
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    Hi. I'm not sure if I'm using this comments section correctly but yeah, here goes.  My story is kinda the same in that im in my 50's and just found out I also have CHF. My ef is 26%, (had a Muga this morning) was hoping for a better outcome but... I was wearing the Life Vest omg! I couldn't stand 1 more day! I'm breaking out under my breast etc. The dr said I could go without but don't return it yet. Oookkkaaayy????? First they scare the crap out of me that i HAVE to wear it,  now with the ejection fraction not very much improved i don't have to.  I guess he thinks that i will improve, it's just going to take a little time. 

    I'm very very depressed. All i do is cry. I had depression/ anxiety before, now it's back with a vengeance!

    Anyway I do know that part of getting better is how I think too so, i need to wake up and get with the program and change my ways!! I have COPD, 40 year pk a day smoker,  almost 3wks without!!! So proud of myself!! Can't believe how bad all my clothes smell!!!

    Anyway, if anybody wants to talk, I'm great at giving advice,  not so good taking it lol!! I apologize ahead of time, this keyboard on my phone is awful!! 

    Hope you have a great night! Kim🌻

  • marshamd59
    marshamd59, July 9,  2019  6:11am EST

    Hi Rmp829 & nrskim62,

    It’s super scary and depressing when you are first diagnosed with CHF. Just know there is still hope for a long and productive life. Rmp828, I’m sorry to hear about your mom’s diagnosis as well. I remember when I found out about my heart my mom was in the hospital getting a pacemaker and I had the same issue I couldn’t make it out of the parking lot before I was completely out of breath, that was in 2006. It has been a Journey with truly more ups than downs. My current EF runs between 20-25, but with the meds and I also have an ICD, I’m able to function well and have a great life. There are a few things I can’t do that I may want too, but for the most part I get along great. I know the story is different for everyone. My advise is one, a healthy lifestyle is super important, so way to go nrskim62 for quitting smoking, keep it up! Two, find a good team of doctors that you like and really listen to you. Three, be patient with yourself and the medical community as much as possible. It takes a while to get on the right meds and get the procedures done, like implanting an ICD, so you don’t have to wear a life vest. Four, once all that’s in order I would ask your doc about cardiac rehab. It’s helpful because you realize you can still do a lot, you can associate with others with similar issues and you also get more education about your condition and living with it. I wish you both all the best and hope you’ll stay in touch with updates and reaching out to others. 

    Take care!

    Michelle

  • Rmp829
    Rmp829, July 13,  2019  1:10am EST

    Thank you both for replying (matsham59 & nrskim62). I have an update and a few more things to share. I almost don’t want to because we should all be uplifting one another but seems like I only have gloom and doom to share 🀷🏽‍♀️ Sorry 😐 

    So I just had my repeat echo a couple weeks ago and my follow up with my cardiologist yesterday. It’s been two and a half months now since my diagnosis. I was hoping and praying for a miraculous healing. Actually going back and for between disbelief and hope. Unfortunately the news was not good but not terrible.  My EF improved slightly. From 20-25 to 25-30% and the cardiac mri indicated 28%. And I have 3 leaky heart valves but the only one he is concerned with is the mitral valve. But he says if we get my heart function stronger the valve thing will get better. So I can’t get my back surgery yet. I have to keep wearing this darn vest until September when I have the echo again and follow up. This vest is hot especially at night and with my hot flashes. Good thing is Zoll sent me extra vests.   The doc is going up on the entresto and maybe the metoprolol next. I’ve been dizzy off and on. But my back and hips and leg hurts so bad everyday I still can’t really focus on all this heart stuff πŸ˜’. Sorry this is so long. Just glad I have people to talk to who are going thru something similar. 

    Goodnight πŸ’€ 😴 

  • tpapete
    tpapete, July 16,  2019  10:55am EST

    The life vest can be very difficult to make comfortable. I have found that taking the defib device out of the cover and putting it in my pocket has helped. Granted, I am a man and my pants are not as snug, but having it hang on my belt just wasn't comfortable. When I sleep, I just leave the device next to me. Only issue is when you go to the bathroom in middle of night you have to carry it. I'm a single father of 3 and have to get up and down constantly. Just try and have a routine. You will get used to it after a while. Hope you get better soon.

  • Rmp829
    Rmp829, July 22,  2019  10:06am EST

    Thanks for the reply tpapete,

     I am getting used to the vest somewhat and like you I put it beside me at night and carry it with me when I get up. 

    During the day I wear it around my neck or on my shoulder  like a purse but I also have my purse too. Gets really heavy. And I already have severe back pain. I’m glad the pocket thing works for you  

    So where are you in this process? I have had 2 echoes and will have my third one in September at which point they will decide if I need the defibrillator implanted or if my heart is recovered enough to to need the surgery or this vest.  I’m hoping for the latter obviously πŸ™‚ then I can get my back fixed and get back to work!  

    Take care and keep us posted!

     

  • Memorare
    Memorare, July 24,  2019  11:30pm EST

    Hang in there rpm828! It’s good to know that your EF is going in the right direction. Keeping you inmy thoughts and hopeful for more improvement on your next echo. My husband  had a low EF on his last echo as well and has to keep wearing the lifevest for now. It is very challenging especially with the hot temps recently. He found a light fanny pack that fits the device. Doing so might help ease the stress on your back. As long as you don’t mind wearing a fanny pack. ‘Hope you feel better soon. 😊

  • preeser
    preeser, August 30,  2019  8:39pm EST

    Hang in there!  The first year was the toughest.  I was diagnosed with cardiomyopathy about 7 years ago, with an EF of .2.  I'm 49 now, male.  I had the lifevest for about 5 months (what a pain!) when I then got an ICD.  My  EF was .35-.4.  I also struggled with continuous sinus infections.  

    It took about 9 months to (kind of) get used to the meds - dizzy, tired, nausea.  

    The outlook on longevity is a lot better than when I was first diagnosed.  I'm not nearly as active as before, but I'm still working 45-50 hrs a week.  

    I was on an exercise program after the ICD, which really helped, I think it helped with being depressed over the diagnosis.  

  • Rmp829
    Rmp829, August 30,  2019  11:19pm EST

    Thanks Memorare & Preeser!

     I did find a fanny pack. It’s working a lot better than that strap across my neck/chest. 

    So I’ve been feeling tired even exhausted off n on lately. I’m not sure if its the meds or the heart failure. My clinic says its the heart failure πŸ™„   I’m on Entresto, spironolactone, baby aspirin, lasix, metoprolol, Potassium and a few other suppliments and pain/nerve pain meds for my back. Thel last echo and cardiac mri in July was 25-30%/28%. My next echo is September 10th. I’m hoping & praying for 40,50 60% EF. In the meantime this vest is still hot!  And irritating 😠 and I still have chronic back pain but I can’t have surgery until my heart function is better. I don’t know how I feel about the icd. But whatever they tell me needs to be done I’m ready to do it. I just want to be well again. My bday was yesterday (55th) mentally I feel 25. Physically I feel 75 πŸ™ƒ

    My best wishes  to you both and all the other followers. Keep me posted & I’ll do the same. 

    πŸ€—

     

  • 1959LADY
    1959LADY, August 31,  2019  9:22am EST

    Was diagnosed with cardiomyopathy last October. EF of 30. After 6 months no improvement of EF.  Changed Dr from a regular cardiologist to a Heart Failure Specialist where they titrated the drugs fo the  highest doses. Entresto, sprionolactone and Coreg. Cardiologist left me on the starting dose for the  entire 6 months. I will go for another Echo October 21st 4 months after being titrated up.

    I declined to wear the vest   I am really non symptomatic. Sometimes slightly winded if I climb stairs. If EF is not rising I will need to see an electro guy to consult about the ICD. Very scared. Can’t believe this has happened. Drs believe it was a virus that attacked my heart.  Hoping and praying the “cocktail” of meds is doing it’s trick.  Some days Im tired. Don’t  know if every pinch and pull I feel in my chest is related to the cardiomyopathy and mentally it’s pulling me down. 

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