Skip to main content

Waiting...

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 right, go with it.  It will help in the end to feel in your soul that your team is the best for you and your care.

Back to the waiting...I got a glimpse into what it will be like when we get the call and I wait to hear the new heart is working.  While waiting through Eric's cath I got the chance to see a family waiting.  Waiting to hear their daughter came through the liver transplant, while also waiting to hear their relative, who was a live donor match, also came through fine.  I talked with the young man's sister.  He was a match for his cousin to donate a portion of his kidney to her.  There were some tense moments when they were given news the procedure on her had to stop due to some issues...but then the news it restarted and was successful.  Through the time I was in there they filled half the waiting room with family and friends offering support.  As the surgery completed, they gradually left, back to their families and hopefully much needed rest.  I wished them well and hoped the best for the 2 who just went through what they did.  I wasn't even part of it but I sat there waiting for smiles and not tears for them.  I get both...

Well, we are back today for the last series of appointments and tests.  We get the chance to meet the surgeon who will do Eric's transplant if the heart comes here.  We are told he is the best package of surgeons wrapped into one having experience in all the areas Eric needs; electro-physio for his ICD, pediatric and adult congenital defects.  Another full day at the Nebraska Medical Center before driving home later this afternoon.  Nebraska presents new cases for transplant listing on Fridays, unlike Iowa who is Mondays.  There is a good chance we may not know until next week what they decide.  But the chances that they don't list him here, when he is already listed at Iowa, are unlikely. And even though it is Nebraska (haha sport joke) we have been very impressed by the facility so far.  Very efficient, kind and Knowledgeable doctors (2 of which are from Iowa originally).  Beautiful facilities and did we mention FREE VALET parking.  That is worth its weight in gold!!!

So thanks again for those thoughts, prayers and good vibes!  Keep them coming our way as we need all we can get right now.

Comments

Popular posts from this blog

Spring Break...

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...

So Many Emotions...

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...

The Recovery

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...