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Tonya E. Recipient

Does anyone else feel.........

Hi 

I have had my heartmate 3 since November 2019. And spent 2 months in hospital,  since i have been home.  I have had driveline pain since they cut out my stitches  at the site, in February of this year. I have had CHF with an injection fraction rate of 15 to 20% off and on for 17 1/2 years before i needed this. I worked off and on and raised 2 kids. I traveled. Some days im good  and believe  i can handle this. Other days i wonder why i did this? And with this COVID19 thing going on . My daughter put me on complete lockdown.  And im going stir crazy. Because i was always a free bird. Does anyone else feel  this way. Or is it just me.

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Debra K.

Yeah...I'm in lockdown also. So no it's not just you. I got my HM2 4/2016. It does get easier. However, I still feel like a prisoner with a ball n chain. Stay safe✌

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In reply to by Debra K.

Tonya E.

Get easier how and when??? I am use to just getting up and going.  My go bag consisted of toothbrush and a change of clothes just incase i decided  i didnt want to come home for a couple of days. Now i am afraid....afraid to be away from wall power.  Afraid that my battery life isnt gonna last. And packing all the extra stuff is a pain. To be honest. Have you taken long trips?I am sorry to sound like a cry baby. Everyone  says they understand  but they really dont understand. Thanks for listening/reading. Lol

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In reply to by Tonya E.

Debra K.

Took me 2 years to accept the fact that it is what it is! It's been 4 yrs for me. Yeah, theres shitty days but the good ones are there. 

Your batteries should last 10 to 12 hrs. I leave the house for my daily stuff with my cross body purse that carries batteries and controller. I have 2 xtra charged batteries in the car.

Focus on the stuff you can change not what you cant do✌🐝safe

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angela .

 

You are def not the only one feeling that way.   I got HM3, Sept '19.  Was short of breath (EF-10-15%) and gave out easily until the lvad team suggested Entresto.  And man oh man that Entresto made a difference, I can walk down long driveway to get mail and then walk up hill to the house and stairs and not have to stop. 

I also started working as an call center worker at my home.  I sign up for 2-4 hours every other day and am able to talk to people, help them and then make extra money.  I am 52 years old, hard headed, hard charging female Marine Corps veteran.  It was especially hard for me since they taught us we can charge hell with a bottle of water and put the whole damn place out.   So sitting around waiting for  THE CALL was not my idea of hope.

Thanks to renewed hope, self will and entrestro-- I am making significant progress.  I was able to complete 36 cardio rehab visits and have energy to clean my house and resist feeling helpless/hopeless. 

Find that passion you like, (painting, reading, writing, tinkering with tech, music, women's groups, prayer teams, mentoring/tutoring) and then give it all you got!

 

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In reply to by angela .

Barry and Susan (caregiver) S.

I am my husbands care giver.  He got his first LVAD oct. 2016 .  His second one January 2019.   Short to shield happened and had to replace it.  This has been a much longer recovery and more problems.  First the healing long time, theN  infection, Several surgeries to clean out infections leaving him very weak.  He has COPD and often completely looses his breath, then he gets anxious and the circle begins .  We are definitely being very careful.  We have our bubble of family we keep with,  mostly all family.   It’s hard, but then life is more important,   Just trying to hang in there, for better days.  
my question is has the Entresto helped your breathing?

Thank you, Susan

 

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Michael H.

   I feel like I'm in solitary confinement  

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In reply to by Michael H.

Tonya E.

Nice to meet you. I went and brought a gaming system just to play some old games. I'm bored. Out of my mind

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Karol S.

Yes, I can relate to how you're feeling. I miss my children and grandchildren so much! Also, my cardiac rehabilitation and Doctor and clinic appointments are on hold. I'm fairly new to LVAD life (Nov. 2019) and there are days that it just seems so hard. 

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In reply to by Karol S.

Tonya E.

Its being new getting  out the hospital after 2 months say coming home then 2 months after that being ready to go outside and explore.  See i moved to a new state just before my surgery so i could have the surgery. I lived by myself in FL. And i wasnt even here settled in before  i had to have emergency  surgery.  So i am having a lot of mental hard days.

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In reply to by Tonya E.

Karol S.

I lived independently also. I'm living in another town with my niece and her family now. They are wonderful to me and try to make it feel like home. I'm near my siblings which is also good. I was used to seeing my grandbabies almost every day,  and that is probably the hardest thing. Maybe I need to look into a gaming system, too. I'm trying to keep my chin up and pray this lock down  soon ends. We will all muddle through together😊

 

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In reply to by Karol S.

Tonya E.

I am trying to figure out how to send it to only you and not have it posted for the world to see. I am not technologically suave.  Lol

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In reply to by Karol S.

Tonya E.

At first i was like ummm posting it open forum....then i thought what i dont care lol your gonna be upset if your a crook and try and steal my identity  your gonna be mad cause I'm a broke itch.lol and can you hook me up with some money also,lol.  So its tlrechols@yahoo.com. email me any time. Hope to hear from you soon.

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In reply to by Karol S.

Barry and Susan (caregiver) S.

We will be seeing them at a family reunion for a week in No. Wisconsin, in our own cabin.  Each of our Three sons and their family have their own cabin.  It’s going to be difficult , hoping we can do this.  The meds and equipment we need to take and not forgetting anything is important. We are only 2 1/2 hrs from home, if it doesn’t work, we go home.  Miss our children and grands so much.  It’s important too!

Susan

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Lisa J.

Hi Tonya! It is so hard adjusting to your new life with an LVAD.  My heartmate III was implanted in Sept. 2018.  It took me almost a year to feel like me again.  I did not want the LVAD but had no choice if I wanted to live.  So over a year later I can say I am in a much better place from when I left the hospital. 

I can't imagine recovering alone, moving and then adding COVID.  I hope you recognize you are stronger than you think.  The good days will out number the bad and you will be more mobile.    It does helps to talk to other LVAD patients.  We are all on different paths but can understand some of the hurdles you need to clear.   I still have my bitter days.  One thing that really helped me was finding a solution to wear my batteries.  Carrying them around was horrible and back breaking.  Not to mention how many times I dropped them.....shhhh.  

I have not put myself on complete lock down.  I live in Ohio and there has not been any serious breakouts. I am cautious but do go to grocery store and visit friends.  I love to socialize so I started to host six feet of separation gatherings.  Best way to host a party, guests have to bring their own drink, chair and can't come into the house :) Easy!  We just have to wait for nice weather. 

I love to travel as well.  I travel around Ohio and fly.   When I go away for the weekend I typically only bring my batteries and wall unit.  I leave my charger at home.  I only take my charger if I am going to be gone more than 3 days.  My wall unit is pretty small so easy to take with me.  If you need any advice on travel I am happy to share.  My first flight was 6 months after surgery.  I just made sure we visited a city with an LVAD center.

I can always share my email if you need to talk   Hang in there.

Lisa

 

 

 

 

 

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In reply to by Lisa J.

Karol S.

Hi Lisa, would you share what you found for the batteries? I have degenerative disk disease and the batteries hurt and exhaust me. Thanks for the 6 feet of separation idea!

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In reply to by Lisa J.

Vickie T.

Hi Lisa hearing your story is so inspiring.  I received my Heartmate 3 in October. I had no idea that my CHF had taken a turn that would change my life. I actually considered not having the surgery. I'm still adjusting to my new way of life if that make any sense. The greatest challenge for me is the overwhelming feeling of being alone and having no purpose any more.  I lost my job; can't afford to complete school and living apart from my girls and grandchildren. 

Also I'm sick with the idea of not being able to wear certain clothes; I haven't figured out how to altered them that would give me the comfort of how I look; is that shadow? Anyway thank for your post 

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In reply to by Vickie T.

Tonya E.

Hi Ms. Vicki, 

I feel the same way like theres no purpose anymore and being alone (relationship wise). And the clothing im like why bothered to get dressed anymore. Cause nothing fits right or looks right. And like you i have a bad back, hips, and knee.  And i have found that if i alternate  between that i call 2 guns(the shoulder holster) and the bag my back does a little better. In all reality i do know this one thing that i have been saying to myself silently....And that is "thank you Lord, for waking me for another day and i know whom ever is looking over me didnt carrry me for 17 1/2 years with a chf rate of 20 to 15% ,let me work and see my kids grown, to have me come this far before  i needed this heartmate, to leave me now.  Anyhoo, i have babbled  enough, thanks for sharing.

 

Tonya

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In reply to by Vickie T.

Tonya E.

Hi Ms. Vicki, 

I feel the same way like theres no purpose anymore and being alone (relationship wise). And the clothing im like why bothered to get dressed anymore. Cause nothing fits right or looks right. And like you i have a bad back, hips, and knee.  And i have found that if i alternate  between that i call 2 guns(the shoulder holster) and the bag my back does a little better. In all reality i do know this one thing that i have been saying to myself silently....And that is "thank you Lord, for waking me for another day and i know whom ever is looking over me didnt carrry me for 17 1/2 years with a chf rate of 20 to 15% ,let me work and see my kids grown, to have me come this far before  i needed this heartmate, to leave me now.  Anyhoo, i have babbled  enough, thanks for sharing.

 

Tonya

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In reply to by Tonya E.

Vickie T.

Hi Tonya God didn't bring us to the door of hope to leave us. The lvad comes with many challenges to me,  but we will meet and overcome them one by one. Stay strong 

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In reply to by Tonya E.

Vickie T.

Hi Tonya God didn't bring us to the door of hope to leave us. The lvad comes with many challenges to me,  but we will meet and overcome them one by one. Stay strong 

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In reply to by Lisa J.

Vickie T.

Hi Lisa hearing your story is so inspiring.  I received my Heartmate 3 in October. I had no idea that my CHF had taken a turn that would change my life. I actually considered not having the surgery. I'm still adjusting to my new way of life if that make any sense. The greatest challenge for me is the overwhelming feeling of being alone and having no purpose any more.  I lost my job; can't afford to complete school and living apart from my girls and grandchildren. 

Also I'm sick with the idea of not being able to wear certain clothes; I haven't figured out how to altered them that would give me the comfort of how I look; is that shadow? Anyway thank for your post 

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In reply to by Lisa J.

Tonya E.

Thank you Ms. Lisa

, i needed that. The complete lockdown wasn't  my idea (thats a long story in its self). I know it will take time to get use too.  It's the fact that in the beginning i was and still am afraid to speak to total strangers, on a open platform.  I'm  not too much of a people person, I'm  great one on one. But i feel like i am in a crowded room. Like what do i say. And how can i say it a be politically correct  and not offend people. My family says i should come with a disclaimer that says :hi i have word vomit and some things i may say may offend you and or if the shoe fits  put it on and wear it let me say my peace. So i am working a lot of first.  Getting out my comfort zone on all fronts and its scaring the crap out  of me. Then to read on here that other people feel like i do and or did and they got thru it ,and beat the same obstacles i am trying to jump over. Helps me put my mind on point. And i am not feeling alone so much. Please believe i would like it if we can keep intouch. Do you know and can you tell me how i can send you my email I'd appreciate  that. Cause i am still operating like its 1999.lol

 

Tonya

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In reply to by Lisa J.

Tonya E.

Thank you Ms. Lisa

, i needed that. The complete lockdown wasn't  my idea (thats a long story in its self). I know it will take time to get use too.  It's the fact that in the beginning i was and still am afraid to speak to total strangers, on a open platform.  I'm  not too much of a people person, I'm  great one on one. But i feel like i am in a crowded room. Like what do i say. And how can i say it a be politically correct  and not offend people. My family says i should come with a disclaimer that says :hi i have word vomit and some things i may say may offend you and or if the shoe fits  put it on and wear it let me say my peace. So i am working a lot of first.  Getting out my comfort zone on all fronts and its scaring the crap out  of me. Then to read on here that other people feel like i do and or did and they got thru it ,and beat the same obstacles i am trying to jump over. Helps me put my mind on point. And i am not feeling alone so much. Please believe i would like it if we can keep intouch. Do you know and can you tell me how i can send you my email I'd appreciate  that. Cause i am still operating like its 1999.lol

 

Tonya

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In reply to by Lisa J.

Tonya E.

Thank you Ms. Lisa

, i needed that. The complete lockdown wasn't  my idea (thats a long story in its self). I know it will take time to get use too.  It's the fact that in the beginning i was and still am afraid to speak to total strangers, on a open platform.  I'm  not too much of a people person, I'm  great one on one. But i feel like i am in a crowded room. Like what do i say. And how can i say it a be politically correct  and not offend people. My family says i should come with a disclaimer that says :hi i have word vomit and some things i may say may offend you and or if the shoe fits  put it on and wear it let me say my peace. So i am working a lot of first.  Getting out my comfort zone on all fronts and its scaring the crap out  of me. Then to read on here that other people feel like i do and or did and they got thru it ,and beat the same obstacles i am trying to jump over. Helps me put my mind on point. And i am not feeling alone so much. Please believe i would like it if we can keep intouch. Do you know and can you tell me how i can send you my email I'd appreciate  that. Cause i am still operating like its 1999.lol

 

Tonya

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Lisa J.

Tonya- so funny that you like to word vomit!  People nowadays are too easily offended so don't worry about it.   You need to stop over thinking and worrying about what others think.   After two life threatening illnesses I stopped over thinking and decided to make my own happiness.  I too struggled with a purpose, I felt my situation dictated that my life needed to be more purposeful and meaningful.  Then I went to girlfriend therapy and found out how inspired they were from my situation.  This is not easy and we need to give ourselves credit for surviving.  

Vicki- I too mourned my clothes it made me very upset.   So sorry you are not near your family.   Give it time you will figure out your new way of life.  You can make it work! 

I wear the under armour football girdle with 6 pockets.  I put the batteries in the thigh pocket and controller in the cup pocket (boys can't do this).  I then wear A-line dresses.  Many dresses I wear people are not aware I am hooked up to batteries.  I hope this solution works for you.   The shirts were so uncomfortable for me.  I tried to make other garments but found this to work the best.

Here is my email LvadLisa@gmail.com.  Feel free to reach out.  I can help with additional info if you want to try the pants. I purchased them on amazon.

wearing batteries with skirt
At football game wearing batteries under skirt

 

batteries stuffed into pants
need to wear stretchy shirt over cords to keep them down- I have wearing tube tops around my waist.  

 

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In reply to by Lisa J.

Tonya E.

Thank you so much for the pep talk . I needed that, boy did i ever... i dont know when i actually started to care what people think , i have never done  that before. I was a hippie born out of era if that makes semae to you. And i am gonna get on the football pants thingy. I have heard about it,  just never seen it. I am a visual person i need to see it before i waste my money. And i will. Thank you so much.

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Michael H.

  Yes I've been a person who enjoyed being and seeing others , I'm retired spending time with friends or doing my own errands    was normal these days I barely see my grandkids , their parents are worried I could get sick . My retirement plans involved a      good amount of travel their is so much in this country to see and enjoy I guess this will give me pause to explore how to            succeed , hang in their 

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Bernie R.

I’ve had my heart mate 3 for 15 months now, I thought that I would feel much stronger than I do by now.  I can only walk about 50 yards without a walker, and with a walker I can walk about 1/2 mile.  When I work around the house I can only work for about 5 minutes before I need to rest for about 5 minutes.  I hope someone can tell me if this is the best I can expect.  I have always been friends “go to” guy, and hate that I am unable to perform the most modest physical tasks.  I was hoping for much more, but feel only slightly better than when I was in heart failure.  I hope someone can send some wisdom my way, I just found this forum, and am encouraged to be part of a group that truly understands this way of life.

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In reply to by Bernie R.

Ron B.

Hi Bernie,

my name is Ron and I have had my LVAD for 2.5 years and can tell you from experience that everything you do from diet, excercise, fluid intake, attitude, medication,and relationships = how you will feel. I am a retired contractor and have always been proud of my physical level of endurance, until I experienced heart failure. I try to now enjoy my friends, children, and grandchildren as much as possible! If you don’t excercise, start! You only benefit yourself and how you feel by pushing yourself. As before this have a reason why you should get out of bed each day. Lord knows it’s not easy sometimes but it’s worth the struggle!! 

Sincerely, Ron B

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In reply to by Ron B.

Bernie R.

Thanks for the pep talk, certainly could stand to lose some weight and walk more.  Thanks again!

 

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Jerome M.

It is a downer for all of us . LVAD patients are not alone with this virus. We walk and/or ride our three wheelers. We talk to neighbors and practice our social distancing. I had my LVAD placed in March of 2018. No problems so far. I was very active with woodworking, golf, ballroom dancing and traveling to see our children and grandchildren. Life is what it is and I thank God for every day I get. I am trying to learn to play a keyboard and progress is slow. I have also started sketching again and hopefully I'll get better at it. Is it always fun, no, but I'm spending time with the love of my life.We talk and text our family constantly. We are taking it one day at a time and making the best of it.

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Christine L.

Tonya, I think all of us are having a hard time during COVID, whether we have an LVAD or not.  Especially people with any kind of underlying condition.  I am in Florida, which is one of the worst places to be right now.  

I've had my LVAD Heartmate 2 for 8-1/2 years.  I had had CHF for 18 years before I was given the LVAD.  Although I had a rough recovery in the hospital and periodic hospitalizations during all these years, my husband and I also did a lot of things--fly home for our son's wedding in Illinois, go on an Alaskan cruise, take numerous car trips up North and various other places.  (We have a time share and decided to take advantage of it many times.)  Our grandson lives about 3 blocks away,, but we don't see him very often because of COVID, whereas before he would be here all the time, including an overnight every week for years.  Now we just see him when the weather allows us to sit outside and visit.

I try to keep busy at home doing different things.  One of the things I do is look at my list of phone and/or Facebook contacts and get in touch with someone I haven't talked to in awhile.  Almost everyone (especially retired people) are happy that you called or texted or emailed.  I'm making masks for the elementary school my grandson will be attending in a few weeks. Even during the lockdown, I'm an ambassador for the LVAD department at my hospital to talk to prospective LVAD patients, especially women.  Pre COVID, I would go to the hospital.  Now, I talk to them via phone or Facetime.  My exercise is walking in the house, sometimes to a DVD.  Too hot in Florida to do it outside!  I'm also trying all sorts of healthy recipes and am really enjoying that.

I, too, get down sometimes.  But we need to keep plugging. Life will get better.