Friday, April 1, 2011

Limitations...

Let me just preface this blog entry with this: certain limitations really do SUCK. 

So if you've been reading my blog you already know about our 19 foot struggle which can certainly be categorized under "limitations." There is a whole schloo (schloo is from my personal dictionary meaning lots) of things Kevin isn't allowed to do or has to be careful. Now, if Kevin is reading this then my apologies love for pointing out the obvious to you but most people don't know what we're going through on a daily basis. 

For instance: no swimming, no baths. Not that we as a family went swimming a lot but could you imagine those living with the LVAD that love to swim?!?!?? Same with baths...I think the only time I saw Kevin in a tub was on our honeymoon when our suite had one of those jacuzzi tubs...and well, that's all the info you're getting from our honeymoon jacuzzi tub experience. (heehee)  The reason behind this is because the LVAD cannot be submerged in water..it requires electricity to work...get it now?

So far the no water limitation isn't really a bother but this also means no splashing or throwing a bucket of water over his head. This also means he can't give our boys a bath. BIG downer in our house because Daddy always did bath time at night. It was his quality time with them since he worked during the day. Don't worry they still get quality time with Daddy. 

If you're a parent, imagine someone telling you that you're not allowed to pick up your child anymore. He isn't allowed to lift anything heavier than 10 lbs maximum. At first it was 5 lbs and we've gradually worked up to 10 lbs but apparently this is his limit. Kevin had a defibrillator put in a few weeks ago...it's about a 4-6 week healing process. He currently cannot lift anything heavier than a gallon of milk. I remember the day in the hospital when the VAD team was "prepping" me for the things he wasn't going to do anymore...at the time Kevin had just woken up from sedation & was only off the ventilator for a few days.......I was sobbing like a baby. Thank my lucky stars that my Aunt was sitting next to me taking notes and being my shoulder. It was so much to take in but they HAD to tell me. They HAD to prepare me. Enough said on that limitation.

Driving is VERY limited. He only just started driving locally about two months ago. Here's the thing. He's not really even supposed to be in the front seat of a car. God forbid we're driving & someone rear-ends us. The airbag goes off, hits him in the chest. This is BAD. It could very well kill him. When he &I drive anywhere together he's always in the back seat. That's right, add chauffeur to the many hats I wear. :-) In the beginning when Kevin first came home, our little family of four couldn't be in the same car. Our cars aren't big enough to have two car seats & an adult in the back seat. Thankfully we had family here and we'd always have to take two cars everywhere. The first time we were in a car together was just before Christmas. My friend Gina let us borrow her minivan so that just the four of us could drive around & look at Christmas lights together. It was fantastic... nowadays the four of us do drive together, we take the chance and just like when he drives locally, we take the chance. 

With the LVAD implant, any pressure on his chest is NOT allowed at all. It could kill him. This is why he has to wear a medic ID necklace saying "no chest compressions, heartmate II LVAD implanted." This is why he needs  a caregiver & people around him to be his advocate should something happen to him...should he pass out.. should he lose consciousness...it's an extremely SERIOUS matter. Having said this, it means no wrestling with our boys, no rough-housing, no jumping on Daddy. This is a tough one. 

Having explained only some of the limitations Kevin has to deal with on a daily basis, put on top of that the issue with his left hand. It can be extremely overwhelming at times and then it can also be easy going. It's hard to explain unless you're actually living with it and seeing how BRAVE he is every day. And let me tell you, he's one brave son of a bitch. So, the next time you see my husband "venting" or "complaining" on Facebook, Twitter, or just in face to face conversation, please think before you speak. We KNOW the alternative and no one likes the alternative. No one does. You don't need to remind either of us of the alternative. 

We are EXTREMELY grateful for the LVAD implant, grateful that he is still alive, grateful for the doctors that saved his life, grateful for all the amazing support & love we've received from our friends & family.....just know that he is allowed to complain/vent as am I......everyone has struggles in their life....our struggles have limitations. 

2 comments:

  1. Hey there Kevin!! Im Shawn, I too have an LVAD Heartmate II implanted. Ive had it since May of 2009. Before that I had a Heartmate XVE from April 2008 until May 2009, had to replace it because it lost all electrical function. LVAD life can be a downer sometimes, but family helps!!! Sounds like you have a very supportive family and that will take you a long way! I too love swimming, my father is retired NAVY and we always grew up swimming or being around water, but all is not lost forever. I believe wholeheartedly in technology, and I know that one day, they will have this thing beat! Dont lose hope bro! This LVAD is amazing, but I am looking forward to the day that we dont need these anymore! Cant wait to swim again, I feel like I want to swim the English Channel :D

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  2. Hey there fellow LVAD'er! This is Tracy...kevin's wife. I copied your message & sent it to him, since it's my blog I only see the comments when they're posted. Yes the LVAD is amazing & none of us has ever lost hope... being listed now it's pretty much out of our hands as to the "when" we'll get the call. But for sure we are all thankful for the LVAD. Without it, we wouldn't be having this discussion. So you've had the Heartmate II LVAD since May 2009... if you don't mind me asking, are you BT or DT? Are you on facebook? You should "like" LVAD Caregivers and From the Bottom of my Heartmate II LVAD...
    Rock On!

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