Heart Failure to Transplant: Curly and Zolvie

The following was posted to my CaringBridge journal on Jan 10, 2015:

Curly and Zolvie came home from the hospital with me.  They are my new constant companions.  They brought a lot of stuff with them that has taken over our guest room.  Like any guests, they are requiring us to change our habits and routines somewhat to accommodate them.  

Curly is the Curlin brand IV pump that continuously infuses dopamine into my PICC line.  I can carry the pump and bag of dopamine in my hand, or I can strap them into a bag that straps around my waist.  One of the most dangerous side effects of continuous dopamine is that it can make the user more prone to fatal arrythmias or sudden cardiac arrest.  That's why Zolvie, The Zoll brand Life Vest, came along too.  Zolvie stands by ready to shock my heart back into normal rhythm or to get it to start beating again.  The vest looks a little like a backwards bra.  Four electrodes in the band monitor my heart rate, and there is a pocket for one of the "therapy pads" of the defibrillator.  The back panel holds two more "therapy pads" between my shoulder blades.  The vest is connected to an external monitor and battery pack with a handy cross-body strap.  The electrodes and therapy pads can be disconnected from the vest so it can be machine washed and dried periodically.  They sent me home with two vests and will mail me one more to make the laundry burden a little less demanding.

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Together Curly and Zolvie add about 10 pounds to my dry weight.  That's only the beginning of the changes they bring and represent.  My heart failure has already placed some limits on my activities, and in a way Curly and Zolvie just make those limits more definable and salient.

• I can't drive.
• I can't be alone with the kids.
• I can't pick up or carry the kids, or anything heavier than 5-10 pounds with my left arm which has the PICC line.
• I can't let the kids use my left arm as a pillow as they like to do when we are snuggling.
• I had to abruptly wean the boys from breastfeeding and no longer have that as a tool for comforting, quieting or settling them to sleep.

These limitations change almost everything!  

• Morning routines
• Diaper changes
• Feeding Elliott
• Naptime routines
• Bedtime routines
• Sleep locations

There will likely be some growing pains as we try to figure out what will work, and big feelings as we grieve the way things used to be.

However, there are many positives to the situation too!

• Adam and I are working closely together to manage the care and maintenance of Curly and Zolvie.  Acts of service and quality time are some of our top love languages and so we feel more in love and connected than ever.
• There are still many many things I CAN still do with no or minor adjustments to how I accomplish them.
• I was going to have to wean anyway because of the immunosuppresant drugs I'd be taking after transplant, and I'd rather be coping with the effects of weaning now than at the same time I'm recovering from open heart surgery!!
• I'm now going to be listed as a status 1B, and am looking at a much reduced wait time, possibly a few months or less.  I could have a new heart before Elliott is a year old!