We did it!  One year with the new heart!  The one year appointment was full of testing.  The sonographer 3 months ago said I had a well-placed heart, the sonographer this checkup said I had a picture perfect heart!  The heart cath also gave us good results and compliments of a healthy heart.

I am out of a mask on a daily basis (some freedom in June but more in July)!  White count has stayed steady in a low “normal” level.  Hemoglobin is finally up, following a successful series of iron infusions. All other labs are looking good.  Once again, we are so grateful to hear the heart care numbers show no rejection!  I’m “free” for 3 months (minus some local labs).  We asked, “what are we supposed to do between now and then” and the nurse coordinator said, “live life”.  Hum. Amazing. Sometimes I feel like I’m playing hooky and other times I feel a sense of freedom I have not felt for a long time.

My meds have significantly reduced.  I now only have 2 meds at 8 am, 15 at 9 am and 5 at night!  No noon or 5 pm meds any longer!  To think I came home with almost 40 just at my 9 am dose – major progress.  I may need to invest in a new pill dispenser since I don’t need the 4 dose a day variety!

I am working on writing another donor letter.  I sent the first letter around the 3rd month post-transplant, primarily focusing on saying thank you. This time, I have struggled a bit more to know what to say.  My experience of “firsts” is the opposite of theirs – first Thanksgiving, first holiday, first birthday – mine are all “with” and theirs are “without”.  It is hard to know how my excitement/gratitude may be received, I want them to know I am indeed doing well, but can only imagine the loss they may still be experiencing.  I continue to struggle with knowing someone had to lose a life so that I may live.  I know I had no control over their loss of life, but that doesn’t ease some of the guilt.  I still hope to meet them someday. 

I have strengthened so many friendships and made many more dear friends throughout this process.  It has been fun to visit CVICU during some of my return visits in Kansas City.  Many of the nurses have left but there are a handful of steady ones.   They are like “home” to me – not somewhere I dread going or have bad memories of – rather a deep gratitude and sense of calm.  They are extended family.  They always tell us how great it is to see us – unfortunately they don’t have an abundance of return visitors – some due to how sick people are when they are there, some due to short stays while in CVICU, and I’m sure there are many other reasons – but for me, I’m grateful to have that opportunity to tell them each time how important their job is, how wonderful the care was that I received and to catch up on their life – kids, grandkids, school, hobbies, etc.  I’m so thankful for the genuine friendships we have developed. You learn a lot about people when you spend nearly 50 days with them! They may have been my assigned nurse, the charge nurse or the staff I saw multiple times a day as I made laps walking the unit getting exercise.  I’m sure there is probably an element of trauma bonding going on as well – but I’m thankful for the smile it brings me and my family when we visit them.

We celebrated my 1 year Heartaversary in true fashion!  I’m thankful for family and friends who came to celebrate.  Wish we could have invited everyone who has touched our lives along this journey.  My dear friend Jamie from Texas provided the biggest surprised in attendance – what a true blessing – she has been faithful throughout this journey offering me words of encouragement, love and laughs, so to see her was a true delight!

I plan to post from time to time moving forward, anticipating that “no news is good news”.  I plan on “living life” – spending time with family and friends, enjoying the lake (which we did in July and it was so incredible!), watching my grandson grow, preparing for football season (GBR), enjoying work, relaxing, going for bike rides, and whatever opportunities might come my way.  

Your support, thoughts, words of encouragement, and prayers have brought such joy to me and my family for the past year+.  Thank you for walking this walk with me in whatever way you participated, it means the world to me. Please keep in touch.  Let’s go to lunch, have a cup of coffee (I’ll have decaf please), or talk on the phone – feel free to reach out.

Blessings to you all!  You hold a special place in my (new) heart!

Diana