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Tori M. Recipient

This wasn't what I was expecting...

Wed, 06/04/2014 - 6:54AM

I'm 30, I was diagnosed with end-stage heart failure when I was 21. I don't have any children and really haven't been able to do a whole lot for the last ten years (not for lack of trying)...

A year ago I was looking on the net for anything to improve my quality of life and I ran across the lvad, I brought it up to my cardiologist and he gave me a referral to the transplant team and now I'm a reluctant owner of the heartware...

If I had died I don't feel like my life was cut short and I wouldn't have any regrets or unfinished business, so now I find myself thinking why did I prolong this, I was so close to the end of all this and I should have just went to sleep. Now I have to deal with this for who knows how much longer.

10401 reads
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Brenda W.

Sat, 06/07/2014 - 6:51PM

Hi, I am 56 years old. I was diagnosed with heart failure at age 44. At that time my heart only functioned at 25%. Over the years my heart got better, got worse, and other things popped up with my heart which are all hereditary. So i also went years and years of not being able to do much because i was constantly short of breathe. I got implanted with the Heartmate II LVAD on Feb 19th of this year. In the beginning i was completely overwhelmed with it all, and to be honest, sometimes still do. But your feelings are yours and are completely normal i think. I was even had suicidal thoughts in the beginning after i came home. I didn't want to live connected to cable wires. I cried all the time to my friends, family, doctors and lvad coordinators. Well, let me just say that THINGS DO GET BETTER. I cannot believe i am even saying this, but its true. You will eventually get into a routine and become use to wearing this heavy gear day in and day out. You will get use to people staring at you, etc etc etc ... I just have always lived with the thought that things happen for a reason. For me i have 2 boys age 24 and 26 and i think i still need to be here for them. For you, you may not know the reason, but there is a reason you got the implant as you are still suppose to be here and living. Feeling depressed is normal and if you find yourself being overwhelmed by it please talk to your doctors/friends or people on this site. Are you on a heart transplant list? I am waiting to be approved for secondary insurance and as soon as that goes through i will go on the list for a new heart. I cannot wait for that. I am actually excited to get a new heart and get rid of my cable wires (lvad)and my pacemaker/defibrillator. If you need someone to talk to, i am here for you as i have been through every emotion known to mankind lol ... I actually had a bad day today and cried, so its normal to feel the way you do. Its hard living this way and no one can understand it unless they are living the same way you are!

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Mnbennett5@comcast.net B.

Wed, 06/11/2014 - 12:04AM

I had my lvad put in a week before you. I promise it does get better. You have to remember your body went thru a major surgery and it will take time. I to have a heartmate 2. I truly believe things happen for a reason. Your feelings are very normal. My heart function was on only 10% and I was diagnosed with heart failure 20 years ago. I have a Biventricular pacemaker and the Lvad. Before you know it you will be doing things you couldn't do before without be tired or short of breath.

I also live in Washington can I ask which hospital you had this done at . Mine was at UW.

I will pray for you and you can send me messages if you have questions..

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Gregory D.

Sun, 10/04/2015 - 2:22PM
Well........that is a statement all us of have felt. I'm 58 and have had my LVAD Heart Mate II for a little over 2 and half years. I have also had an ICD which was implanted in 2007 and swapped out in 2012. So to die peacefully or keep on plugging? Humm. Well end stage Cat IV sux, because I had it and developed massive infections in my legs which had to be cleared up prior to the placement. I had swollen to the point that shoes and socks heart horribly and I literally started to melt with fluid coming from my feet and hands on an hourly basis. So going quietly into that sweet night, was not going to happen. If I had not gotten the LVAD I would have been bed ridden and died a painful death, drowning in my own fluids. Gross but true. So I got the LVAD and I am DT not Xplant due to the infections. Does it suck? Yes. Is it a pain in the rear? Yes. Do I deal with it? Absolutely. I have often wondered why, and there is no reason that I can put a finger on directly. But it is what it is. And I have been and intend to make the best of it. Sure I can't do the things I loved like Swimming, Sailing, Surfing, horseback riding. But I get up everyday, hope for the best and always keep the worst in the back of my mind. Does it hurt physically, no. But I have a lot of emotional baggage about this I deal with everyday. No I don't take any meds to help overcome the emotional BS. Just my coffee, and long walks. However what I have seen and done since my implant, have been pretty fantastic. Honestly a pain in the rear a lot of times, but still quite an adventure. You are alive because. and thats that so find something to take your days and sleep well at night. Cause bigger than snot, the sun is going to come up, the tax man will cometh, and how you personally deal with the day will either make you or break you. You can always sit and whine and bemoan your situation, or you can always go out get a cup of coffee and a piece of pie. Pie is always good. :)
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Jeff W.

Tue, 02/02/2016 - 12:40AM
I know I didn't write that, but it certainly sounds like. There is too much whining on this board. God never promised you a rose garden, but even they have their thorns. Yes it is not the dream of old age as we thought about when we were younger, but life is hard and you can make it better for someone else. Get up every morning and figure out what one thing you could do for someone else. I purposely made my LVAD gear look like gun holsters at my side. It gets people to stare particularly children. I then explain I am a bionic man and continue to educate them on what an LVAD does. I visit with potential LVAD candidates and in my brutally honest way tell them of the pro and cons. My wife accompanies me to give the caregiver's view. I feel I was given this extra time to spend with my wife and do a little bit more for others. I know I am destination LVADer and as such time is relatively short, but I will make the best last to the end. I hope this might help some viewers on the oard and if you need to talk I'm available.
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Joan J.

Mon, 10/19/2015 - 3:55PM
My husband 35 now has been also ill for 9 years before he got lvad. Now comparing to the last two years before getting lvad he feels great although it was not like this straight form the beginning. Isn't there any chanace that your heart will get a good rest thanks to lvad and recover (asking about recovery as you are very young).
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Stephen C.

Wed, 06/01/2016 - 8:23PM
Hi I'm Steve. I just spent my 49th b day getting a triple bypass. Even after that they say my heart is only at 12%. So now there talking LVAD and I'm scared. Any suggestions. My main concern is I don't think my wife can handle it