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Virginia S. Friend

How do you cope with living with an LVAD?

Hello all, 

I'm not exactly new to living with an LVAD since I've had mine for two years now, but I'm still adjusting and trying to cope with it.

It's a huge change in my life that happened at a very young age. I was only twenty-one years old when I got my LVAD and I've spent two of my birthdays in the hospital that I got my LVAD.

I do struggle with anxiety, depression, and PTSD but I still try to be optimistic and positive. I'm grateful to still be alive, but sometimes I wonder at what cost? How do you cope with living with an LVAD?

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ron l.

I can only offer what I've found through researching LVADs. Personally I don't have an LVAD. I expereinced an MI (heart attack) 13 years ago.  Hopefully if I'm around long enough I'll have a decsion to make between a transplant, if I don't outage that choice,  and an LVAD.   

I suggest that you Google Laura Huber LVAD. She was 26 when she recieved an LVAD over 13 yrs. ago. Thus far she has not been put on the transplant list because of the advancement in LVAD technology to date, which is truly something else. I've read where some are choosing the LVAD.  

There's a very informative and positive video on youtube.  Go to Youtube, type in New Hope For Congestive Heart Failure. It's the 28:01 minute video. 

I wish you the best.  Cheers!

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MIke S.

Hi, Virginia. First off, I'm an old man dealing with lots of old-age problems besides the LVAD. I got my LVAD about five years ago and have pretty well come to terms with it. The limitation that bothers me most is staying away from water.  I used to love swimming and boat rides, but they are out of bounds with the controller.  

Other than that, my life hasn't changed much. I'm feeble from the heart failure, but I read of many LVAD recipients who still carry out vigorous activities, so I think that's just me. It took a little while to get used to the controller and batteries, and taking care of them, but they've just become part of my life now, like brushing my teeth. 

I was back in the hospital several times in the first year or two, but I haven't been hospitalized for a couple of years now. The biggest single problem I have is with the blood thinners. I went to the hospital several times with bleeding problems, but I've slowly learned to keep my INR in range. Actually, my wife, who is my caregiver, has learned that. She checks my INR weekly and adjusts my Warfarin level to keep it in range.

Having an LVAD is a big deal in your life, but it's better than the alternative. Mine has given me five years of life I wouldn't have had without it, and I've enjoyed them and am very grateful.

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Cindy S.

Hey Virginia! I just got my LVAD on January 21,2020. Although I only have had it for 7 months I am just now getting adjusted to carrying my bag around all the time and showering without help from my husband. I am 53 years old. I am a Christian and find that praying and worshiping helps me make it through the tough times. Listening to worship music helps me too. My husband and I had adopted four foster children when I was 50 years old so I have four children from the ages of 8 to 13 to take care of. They keep me going and young! ;) I know what it’s like dealing with heart problems at a young age. After I gave birth to my third child I found out I had cardiomyopathy my heart was functioning only at 6% and I was 29 years old! 
oh yeah, the dr told me I couldn’t have any more children or else I would die. That was the reasoning for my husband and I adopting our children, why at such a old age? A promise God had given me one day. He told me he would give me four more children when I was 50 years old then I would have 7 children and my family would be complete. I have 3 biological children and 4 adopted children! God has a great plan for you too! Be encouraged and know that you are not forgotten God knows your name.

 

 

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In reply to by Cindy S.

Juanita P.

Hello Cindy, so sorry to hear about your myopathy at a young age and not able to have anymore children of your own...God has allowed you; however, another way to have children and the ability to give your love.  Thank God you also have a supportive husband... I've had my LVAD about 4 years now...and I can't, can't get adjusted totally to it.  As a matter of fact, I'm finding myself getting real angry at it all.  It feels as though they own my live with appts., blood work, echo's, etc.  I'm alone, no husband, no significant other, and have a hard time putting myself out there to anyone at this point.  Basically, I have given up on any emotional/physical involvement.   I had to retire from a job I totally loved, earned my Master's and professional License, however, unable to use neither one at this point.  I believe in God strongly, pray, and attend church, when there was no covid., and continue to ask God "why?"  I'm not a transplant recipient because of high antibodies, 99 percent.  The medical profession would need to make me real sick, desensitize the antibodies, washing them out and possibly find a match.  I'm very frustrated at this point and hurt, very sore from carrying this heavy bag, and feel so out of place in  my life, a total 360.  I admire your courage and strength and would say continue the love inside and out.  For me, I just can't get past this device.  I pray that God repairs my EF to possibly unhook this device, but it is slowly moving up, only to 20 percent.   The LV is hardly moving... If it wasn't for the LVAD, I wouldn't be here.  However, when I went down for the count, basically died on 2/2017, I saw heaven and this earth was not in my memory...Very beautiful and breathtaking.  When I tell the Dr's, they just look at me in disbelief.  Hang in there, everyone handles things differently..It sounds like your a strong young lady and determined.  Which is a necessity with an LVAD...You got this!!

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richard c.

Hi virginia,

well im at 18months now. i feel so much better now. yes it does get frustrating at times. especially when u try to sleep. i always keep a positive attitude. if u ever need someone to talk to just contact me

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Ray ..

I am on the same page with Juanita.  Toting this “fish-finder” around gets old real quick. 

And, I can forget about water skiing or intimacy with a women.

I got a round trip ticket on the flat-line in 2015, thence afterward cardiologists told me I needed this LVAD.... but I have had to deal with it alone.

Just recently I had clot complications  from lumpy blood, but have now come out of the hospital....a very close call.

In researching surgical approaches that would fix the heart and permit LVAD removal, I have found that not very many thoracic surgeons keep current on Board MOC (Maintenance of Certification) and subspecialists in Congenital Heart issues are scarce ... as are cardiovalvular surgeons.  The LVAD seems to address an ensemble of heart ailments so I guess it slows down medical advancement.

They (thoracic heart surgeons) get Board certified and that’s it.

When I was told I had a congenital valvular problem, I thought I had drawn the “ Ace of Spades.”

As an LVAD patron, I can only hope that advances in valvular surgical techniques come along allowing an LVAD X-plant.

 

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In reply to by Ray ..

Juanita P.

Hello Ray, yes I didn't want to put out there so blunt...but its not very appealing with a driveline visually inserted into your ab and batteries hanging off your body, connected to it.   I was very positive about all this, but after a few years, yes 'GETS OLD."  ..If you were to get intimate with someone, lucky enough, its like "hold on, let  me adjust the batteries or maybe hook up to the night controller...Hmmm not my style.  however, I'm supposed to say "life is good."  No it isn't.  

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In reply to by Juanita P.

Ray ..

I know what you mean about conflicting info., finally I got adamant that these people should all “be on the same page”, but they still lie and withhold information.

They also matched me to a transplant doctor where we were very clear the LVAD was destination therapy for me unless they had a plan for valve repair.

Lugging this fish-finder around has gotten old, though, I haven’t cruised the bars for feminine pity.   Maybe I’m on to something ... as an LVAD Borg I couldn’t be called “Seven”, maybe “Three” ?

And I don’t know yet how quickly I could maneuver the equipment given the incentive you’ve described.

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In reply to by Ray ..

Juanita P.

Hello again Ray,

 

I just seen my medical care Dr. for the LVAD, actually he's a transplant Dr.  Not sure why I'm seeing him.  Not a transplant candidate.  Amazing how the stories change, one can do this can't do that....One says 40 EF can look at unhook, another says no has to be normal range...I was informed by another Dr. at 35 EF can ask to be unhooked....My God inconsistent to the Max.   I informed them a few months go, what my goal was and that I didn't like the LVAD at all.  I was sharing very honestly, everyone is different etc.....he suggested, the TRANSPLANT DR...(New Rookie I might add) I see a psychiatrist or evaluated by one....I laughed my butt off.  This is my field actually, 36 years worth...Mental health, social services, judiciary, etc.  In the first place, I wasn't suicidal, just inquiring about having unhooked and medication managed.  Very honest question.  He advised would be self suicide...I said no its a lack of quality of life and want to live it the way I choose.  I don't have to keep a life supporting device if that is my goal.  Sooooo i get a call two weeks later from psychiatrist secretary...blindsided me...I asked one real important question, what was the reason for referral?? She put me on hold, advised didn't have one...I said well go back and tell the team thank you, appreciate their concerned, also please advise the patient your making a referral and will get a call.  Please give the patient the respect of knowing what your doing instead of BLINDSIDE.  Now gonna go live my life as best as I can.  Besides I have a social worker i see once a month, the Dr. knew this...Because of all the expensive copays, thats all I can afford.  After that point, totally lost respect for that department.  If you look up the cost of the LVAD comparison to a transplant, the LVAD far exceeds.  Also, this country only transplants 3,000 hearts per year....Not a lot; therefore, if I were or to go on transplant list, would be quite the wait with how well i'm doing.  With,  I might add, continued heart cath's, testing,blood work off the chain, etc.  Add that medical expense and harsh wear and tear on your body would be astronomical.  I had to get this out, sorry.   

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Ginger H.

I would like to share an LVAD vest which has helped me balance the weight of the equipment.  I ordered 3 vests from Poland and it has helped me adjust and get stronger.

http://lvadshirt.com/