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

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✌

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!

   I feel like I'm in solitary confinement  

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. 

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

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.

  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 

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.

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.

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.

I have pain that wakes me up at night. My driveline is arched up under my ski. It’s is very painful. As soon as I sit or stand it flattens out and the bad pain is gone.