Coping with Reality

The first thing you should know is that you're not alone. You're part of a community of thousands who are dealing with the same problems you're dealing with right now. Some have gotten past similar problems and some just haven't gotten to those problems yet, but we're all facing the same problems. Life is tough for everyone. Even the luckiest people in this world face more problems than they should. Ideally, we would all be on a beach or in our happy place without any worries. That's not reality. 

More than just the community of LVAD patients and their supporters, you have the same community around you that you had before your husband had a heart attack. If you ask for help from friends and family you'll be surprised at both who and how many people will step up to help. I have a close group of family and friends whom I have talked with about my challenges. Every day someone from that group does something, without even realizing it, that picks me up and helps me to make it another day. Sometimes it's as simple as sending me a joke or just saying hey. I did have to work on being able to accept that type of help. Early on I was upset when friends and family didn't want to talk about my heart. I would feel sick and since they failed to directly address my illness I felt they didn't care. That's just not true. For the most part, people don't know how to deal with those who are sick. Should they talk about problems or should they help distract? Embrace what you're getting from friends and family. They are worried. They do care. They do want to help. But they have to do that in their own way and you have to be accepting of what they offer even if it doesn't fully make sense to you at the time. 

Find small places for motivation. I love corny motivational videos on YouTube. Sometimes we just have to feed off of others' energy. Jocko Willink has a popular podcast. He's a former Navy SEAL. One of his mantras is the Good Policy. His response to every problem or obstacle is to say "good." If you have a flat tire... good. You get to practice changing a tire. If a package you need is delayed... good. You then get to find a replacement for that need. He explains it a lot better than I do. You can search YouTube for 'Jocko good' and it will come up. I played football when I was younger so those jockish-type locker room speeches always resonate with me, but I'm sure you can find a brand of motivation that helps you. 

Sam Harris has a guided meditation app - Waking Up - for the phone. It does cost $120/year; however, he offers scholarships if you apply and say that you can't pay. I did and within a week had full access to the app. Meditation has helped me a lot. 

As far as money... both hospitals that I have visited have social workers who can help find funding and will know local opportunities for help. There are foundations around the country that can help - for example, the Heart Brothers in Boston provides support to patients around Boston. I wouldn't have gotten through my recent hospital stay without the help of a social worker and her knowledge of local programs that could help out.

Take things one day at a time. Don't worry about obstacles down the road. Focus on today and then deal with tomorrow. You're already doing something positive by reaching out here. Keep pushing forward and you will find that one of the great miracles of life is that there is always hope.

I wish you and your husband the best. 

Phil

Your story was breaking my heart.  I had my LVAD and severe heart so close to Valentines Day, both years apart.  I have had my LVAD. almost four years.

My only hope comes from faith.  I was not brought up in the church but found the Lord and researched his claims.  Jesus can help you with comfort through prayer.  He truly was the Son of God.  I wish yo peace and comfort during your difficult times.  

I've read what all of you are saying and I feel for you. I was in the best physical shape of my life despite heart failure (EF of 22%) only 7 months before my LVAD which plummeted due to getting Covid. It attacked my weakened heart and almost killed me in February (2022). I can't really blame my doctor for painting a rosy picture of life with an LVAD because if I'd known how long the recovery would take and what I'd have to go through it would have been a harder decision. 9 months post LVAD I'm still improving but I'm only 2/3 back to where I was last year. I'm talking about strength, fitness, a myriad of post LVAD issues that are not life threatening but extremely annoying like numb feet, vericose veins all over my legs and feet, a general lack of energy and need for excessive sleep. Anyone who has other than a dog (he's pretty awesome as they go) to care for them has it easier than someone who's spouse (is an RN) divorced them because they didn't want to deal with anything slowing them down. And though I don't have any caregivers, it has to be more challenging to care deeply for someone and be out of control to make them better despite trying everything possible. Everyone on this board has had more than their share of health and life challenges. What's helped me through it is a combination of stubbornness and faith. Not many of us lived through the Great Depression but it was an awful time that was temporary fortunately. Yes, we are being challenged to our core. I must have hope and faith that in a year I'll wonder how I made it through the challenges and really glad I did! I hope I'm not making light of anyone's circumstance. Today I'm doing well. A couple weeks ago I was depressed, felt alone and isolated and wondered if all this was worth it. Thank goodness for my relentless stubbornness and, of course, my awesome Yorkie companion! We will all get through this. See it in your mind. The best thing a caregiver can do IMHO is to continue thinking positively as much as possible, don't forget to take care of yourself in the process of giving, giving, giving and keep reminding your (spouse, patient, relative, etc.) that the future is bright next year when they are recovered - don't get stuck in the challenges of today. SO many people on mylvad.com have made it through similar challenges you and yours are experiencing and now live far better lives than those who chose against medical intervention. I would not be writing today if I had not chosen the LVAD. I'm not deeply religious, but once I realized that I wasn't in control and adopted "God has a plan" I think it has helped me internalize that I have to let go of things I can't control. 

I wish you all the very best. Often times it is your words on this post that help me when I'm feeling down. I thank you... 

I have seen patients are automatically eligible for Social Security benefits for 24 months.

I had my VAD implanted 16 months ago and you are a candidate for Social Security Disability I was approved right away. Up to 24 months. Then I flip to my regular Social Security. Kim....if haven't applied I would suggest you get on this asap. I know it's tough what your going thru as we all have had some hardships throughout our own journey. I'm here to listen if you need to vent!!! I know the feeling!!!

Is anyone struggling with eating?

Since I came out of hospital, may this year, my appetite has gone completely. I love my food normally so I really hope it comes back.

i m worried because if I don’t put on weight i won’t be able to have a transplant.

Emma 

I’m pretty sure an LVAD is automatic qualification for Disability. I got it. Look it up on the SSDI site. 

And LVAD it’s automatic qualification for Social Security disability. I got mine that way. Look it up on the SSDI website. According to that website an LVAD it’s supposed to be expedited according to the Social Security bureau. Check it out.

Need to locate some HM3 MENS 2X LVAD SHIRTS THAT WONT BREAK THE BANK