This picture here is a powerful one for me. It was taken by my friend Claire on the night Kevin received his new heart. All the hands are wearing "donate life" bracelets. All the hands belong to my dear friends, my twin mom friends. All of these wonderful women were with me in the hospital. My other twin mom friends were with our boys.
Every time I stare at this picture I absolutely start to tear up. It embodies all of what my little family of four has been through these past 9+ months. It represents the hope, the love, and the unity that carried us through.
Today, I met up with a few of these twin mom friends, kids included, at a local park. Had a great time. Lots of laughing, giggling, eating, talking, yelling, crying because someone was throwing sand or someone was not sharing....you know, normal toddler playdates. All in good fun. As I was leaving I realized this was the first playdate in a long time where there was no immediate crisis looming over me or my family. No real rush to get anywhere. I reflected on the days where I really tried to have a good time but couldn't because I was so worried about Kevin or needed to pick up medication, or just needed to be in ten places at the same time. Not today. It's as if someone has pressed play on my life again. As if we were put on pause. And then when it really was just the four of us again, someone pressed play.
My name is Jeff and I have a LVAD and I am having a hard time dealing with this. My doctor is the best and my wife are doing everything they can to help me. It's been two months and I am still showing fluid in my site. I am very grateful to be alive. Just waiting for a new heart. it all feels so surreal and to be honest I am out of my mind with worry that I am going to die before I can get a heart. Will someone please help me to get used to this new life. Jeff
ReplyDeleteJeff I'm at 4.5 months post LVAD install. My sure still lightly ooses, can but it's just about dinner. Tuesday they said I can go to well bandage changes (which I'm sure makes my wife's day, as well as mine)
ReplyDeleteWhen I was deciding to get an LVAD I was not a candidate for TP as my kidneys were wall asks from all the drugs over the last 15 years. While deciding u was in Milrinone and had been for four months and it was not helping as much anymore, in sorry I was declining.
While trying to decide if meet a man who had his LVAD for five plus years. He helped me realize even and LVAD with more years is better than the alternative.
They tell me as my kidneys continue to improve I may eventually may be a transplant candidate but that will depend on kidney function. I was at stage 4 heart failure and stage 3 kidney failure. Today I walked .7 miles on a treadmill at 2.3 mile or hour with no shortness of breath.
My point is it can take 6 months to fully recover from the surgery, and an lvad WILL LAND dried extremeexte life. There are people on other books I've read that are ten years out with their lvad. 10 years! And they have the older technology n
Keep on keeping on brother! Lvad is not an end it's a new beginning. If you want to talk...864 202 0076
Sorry for the tops Jeff. A life extended is a good thing. Am lvad is the best to they have right now. Keep the faith, stay strong TAKE ALL YOUR MEDS AS INSTRUCTED report setbacks to your lvad team promptly even if it seems minor. They're good at what they do. Good luck my LVAD BROTHER! Stay strong. Know that your stamina and strength will come back gradually. Walk almost as far as you can each day (not as far as you can, were trying to build stamina not run a race) (think if it like this for a weightlifter. Numerous small reps will build strength and stamina) know that open heart surgery is A FREAKING MAJOR SURGERY and everyone recovers at different rates. Be as active as you can,it will help I promise
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