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MyLVAD is dedicated to LVAD recipients and their loved ones. We feel it is vital to know you are not alone on your LVAD journey. Every month MyLVAD will feature a recipient or caregiver who has volunteered to share their story in what we are calling our Community Spotlight.
This month we would like to introduce you to Jason and Shannon. Jason is in his early 30s and received his LVAD in the fall of 2011. He has a family history of cardiomyopathy, his father also received an LVAD and heart transplant. Shannon is his partner and his caregiver. She is a mother of two, works full time and is the author of the blog ourlifeourlovehislvad.com which chronicles their LVAD journey.
Shannon shares her reflections on her relationship with Jason since his LVAD implant.
With Valentine?s Day soon approaching, what better things to reflect on than love and relationships with someone with an LVAD.
When Jason received his LVAD on September 26, 2011, I knew life was going to change, but I had no idea to what extent. First of all, it was so hard watching someone I loved having surgery, not to mention heart surgery. None the less I was ecstatic when Jason for made the decision to get an LVAD.
I will never forget the first time I laid my head on Jason?s chest after he received his LVAD. As I listened to this awesome piece of equipment, I couldn't help but to feel a little sad that I couldn?t hear Jason?s heart any longer. .now I will let you know that within the last few weeks, I can hear jason?s heart beating again, . I was so happy,In a strange way it feel like I got a little part of my Jason back. Now there have been plenty of times that I have thought back and thought to myself ?we should have done this ..or that. That is totally normal but you can?t let those things get too you too much. Of course you will wish that you swam in the river together one more time, or took one last shower together. You just have to have faith that one day you will get to do those things together one day. For the day to day battles, I will continue to fight for Jason and be his number one fan. In that aspect I know I will never have any regrets.
When Jason was released from the hospital with his LVAD, I knew things would be different. Starting with his driveline care, we always tried to make things fun. I always love the driveline care every night. I always draw pictures on the dressing, or just write I love you or whatever comes to mind. He always looks forward to what I am going to write that night. My favourite part is how attentive he is while I?m doing his driveline care! I like to think it?s because his totally in love with me!
After the LVAD was placed Jason and I talked about when to become intimate again. I told him just to let me know when he was ready, because I knew he was going to be just as scared as I was. Now I will tell you ?The first time post - LVAD?, actually does feel like ?your first time? again! Its kind of awkward well I?m not even going to say kind of..it is!, I could hardly touch him anywhere because he was still so sore, I was so scared my legs would get tangled in his cord, or in some way I was going to hurt him. I have good news though, it does get better. Communication is a must in this area, and the more you are intimate with your partner, the easier it will get. You will still always be ?aware? of the cords, but it does become more natural.
The emotional aspect of being with someone with an LVAD is the most difficult for me, but it is just as emotionally difficult for Jason. It is scary being with someone with an LVAD, but then again it was hard being with Jason just with his CHF. For the most part it is just dealing with the unknown. For Jason and I that meant that we knew we needed more than each other, we needed faith in our lives. With faith we are able to accept thing as they are and Thank God for everything he blesses us with each and every day. It doesn?t mean that we?ve had an easy road, it has been very hard, but we have faith that God is constantly watching over both of us. Jason and I were laying in bed one night praying, and he started to get emotional. When I asked him what was wrong, he said he was just thanking God for his life?now that?s awesome.
Living with an LVAD, Jason has what he calls ?LVAD sad days? . While he doesn?t have them very often, I never dismiss his fears or feelings. He told me not too long ago that he?ll find me when I get to heaven. Although I felt like crying, I said "and if I get there before you, I won?t stop looking until I find you Jason." If you think about what could happen you will never enjoy the moment you have right in front of you. We always share our feelings and nothing is ever left unsaid between Jason and I. I will end saying this. Being in love with someone with an LVAD isn?t always easy, but I?ve never been so proud of someone in my whole life.
MyLVAD would like to thank Shannon for her openness and courage to share her story with our community. Share your thoughts and how you have dealt with some of the same issues on your journey.
If you would like to share your story with the MyLVAD community send us an email at mylvad@gmail.com. We would love to feature your story in our Community Spotlight.

Comments

I admire your strength, courage, and communication skills! The poem is lovely and attests your enduring love and commitment to each other. Thank you for sharing. Best wishes on your life long journey together.

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