Journey to a New Heart

So we are just past 12 weeks post transplant...and what a ride.  Eric is doing great and still continues to amaze me and others who know him with how well he is doing. Every day is a new aspect of normal.  I joked at one point that he could only "milk this transplant" for so long.  But you know what, he can milk what he has gone through for life  because he has a second chance and renewed energy.  He waited for SO long, 33 months, and came out on top swinging.  I know, because I was there every minute of it.  Learning the new normal for us both, new roles because he can do so much more, is the biggest adjustment. He continues to get stronger and more independent and that is awesome. I know I go over the top in certain ways because that is my nature with my job.  When they come in to review my program every aspect is looked at closely. And at work, that is what is needed,  but at home, not so much.  So I continue to grow and work on m...

So everyone thought the wait for an organ, a second chance, was difficult.  And don't get me wrong, it is/was.  But the road to recovery, once you have that gift, is sometimes just as hard if not worse. Now, everyone's story is different.  Some people wait a short time, always feeling OK for them while they wait and the post time is horrible.  Then you have people who wait a REALLY long time, lets say maybe 1008 days, and the first few weeks are really good but there is a HUGE adjustment curve. Now, as I say that, Eric is still doing great.  And he so far is ahead of the curve, but the medicine that will be on board, to essentially save his life and preserve his heart, are not a walk in the park. They have an amazing purpose, to help his body accept and not fight the new heart.  But the down side of them, is they are really hard on the body, lowering his immune system, to keep his body from rejecting the heart. And when I say hard, I mean hard.  Gu...

OK, where to begin?  I think I want to put this all down to remember but also for Eric to read as well.  Everyone saw my repeated posts that night with the time frame so that is documented so to speak. Now I don't know where any of you stand on views of "things happening for a reason" or there being a power that puts everything into alignment just right or whatever thoughts you have on any of that. I for one, believe in signs and that not everything is a coincidence.  If you don't want to believe that then you can stop reading here because from this point on, I write about all the "things/happenings" that seem to tie everything together and help us...or well at least me.  Disclaimer...forgive me as this may jump around a bit as I try to put my thoughts together So, about 3 weeks before THE CALL (as it will always be known) I had a dream.  In my dream, I was sitting in the waiting room here in Nebraska (I know this because it was the same room I waited i...

So here we are...THE CALL came at 11:15 this morning.  Holy Crap, really?! So I was actually on the ball this morning and brought my briefcase and all paperwork into school. Ready to work this afternoon to finish stuff up instead of leaving it in the car to bring in later... Great workout at the gym, good talk with a friend and off to a chiropractor appointment. Chiropractor and dentist on the agenda for today before back to school for computer work. And then...Eric calls me eerily calm which makes me think he got a shock from his ICD.  NOPE, "um, so I just got the call.  You need to get your ass home, we have 4.5 hours to get to Nebraska".  Um, OK, I am 20 minutes away and we live 3 hours and 53 minutes from the hospital, on a good day, no traffic, no potty stops.  Forgive me but HOLY SHIT!!! Who do I call, what do I do...call and cancel your appointments, you have a good reason.  Call work/employees to make sure all is good there.  Call family...

This seems to be our new norm.  Waiting for the CALL, waiting for his heart cath to get done and waiting to hear he is listed here in Nebraska, waiting for people we hope would contact us to show support.  Now I am not complaining or mean to sound like I am on a pity party, this is our life...NOW.  What an amazing life it will be when we do get that CALL, whether it be at Iowa or Nebraska. I have said it before and I stand by it...this is not a journey for everyone to handle and I guess that is why some pull away.  But we have been graced by an amazing support system that has been there for us.  We have so many things to be grateful for.  We have encountered amazing nurses and doctors, people who we have gotten the pleasure to work with who continue to pull us through.  We have had some that we had to decide weren't for us in the best interest of Eric.  And that is my advice to all of you...be your best advocate.  If something doesn't feel ...

So here we are in Nebraska... Eric is getting worked up to be listed here as well as at the University of Iowa.  We have been very impressed so far at our 2 days of appointments and we have 3 more; tomorrow as well as Tuesday/Wednesday next week. The fund-raising efforts continue and we have been so amazed at the support from so many as well as gestures that to some may not seem huge but to us mean so much.  An offer to come change Eric's oil, a night at a hotel so we didn't have to drive the entire way in a day and money/gift cards for gas and food along the way.  To us, these are such kind and amazing acts of kindness that make our hearts full of gratitude that some are willing to give of themselves to help us. In an appointment today, Eric pointed out the reflection that it took us so long to ask for help, because in our respective careers we are the ones that fix issues...not the other way around.  All of this is amazing and overwhelming in a way that we know...

Forgive me if this is a bit all over the place.  I have wanted to write something for a while but have many thoughts.  I will do my best to put them together in a manner that makes sense. To most, spring break means time.  Time to have off work or school, time to go on vacation, time to be.  Growing up, I never really knew what spring break was because I was in a small town going to a Catholic school. We had Easter break but that was all and that was a time to just be with family.  There were no trips, no breaks, just being who we were with an extra day off school if we were lucky. Then college came and spring break for the first 3 years meant no classes but work for me.  The last year of college meant a vacation with friends that I loved and a break from here. Flash forward to now...I don't have kids so no school breaks to be had yet I work in a school where they have a spring break.  It still means work for me normally but every year it seems to m...

Now that I have decided to have my own blog about our journey, I feel I want to write another one.  I know I just published one this morning so don't get used to me doing one this frequently.  I love writing and feel I don't have enough time in general but I think it will be cathartic for me to reflect. It is good to reflect on the people that have continued to be in our lives through this journey.  We have an amazing support system here.  I have a job I love that is fulfilling and rewarding with great employees that I can count on. And we have become connected with awesome people we, or rather I, would probably never have met and gotten to know.  I always knew there were people who experienced transplants near us...I admittedly never knew HOW MANY.  We have an incredible hospital very close to us that has a great transplant rate.  I don't know why I never really acknowledged that truly before.  I have become connected and genuinely friends ...

The first gift Eric gave me at our  first Christmas together... Eric and I met in November of 2012.  This glass heart was the first gift he gave me our first Christmas together.  It had an amazing note in a card with it that talked about true love and that we had found it finally together.  I decided to carry the heart with me always. Flash forward to February 12, 2014.  This was the day that we found out Eric would need a heart transplant.  I pulled this heart from the little satchel I carry it in and reflected.  Was this the journey I thought we would be on in our lives together...no.  But this first gift became a sign that we could make it through anything we set our minds to as long as we fought together. I never knew how significant this heart would become years down the road but it is still always with me.  The card is safely tucked away but I take it out and read it whenever I feel I need to.  The heart is always with me whe...