1 Mo Post-Op

Hello my little bloggies!  Long time, no type - my bad, but I haven't had a lot of news to report!  I can't believe that as I blog, exactly one month ago I was in the middle of my heart transplant!  Time flies, but it doesn't if you know what I mean?!  I miss you all dearly and can not wait to return home!  That is not up to me or that one way ticket would've been bought weeks ago!  My family and I are constantly reminded of all the good left in the world because of you all!  The thoughts, prayers, calls/texts, donations, fundraisers, you name it...you all know how to make a girl and her family feel truly blessed!  Thank you from the bottom of my, well, 4-chambered fully functioning heart!  My love for you all will endure as well as my donor family - I pray to one day meet you and thank you in person!  

Today, and the preceding days, have been good!  I had a one month post op heart catheterization today after some lab draws and an echocardiogram.  My labs indicate that all my meds are adjusted accordingly and the pressures look similar to the previous cath two weeks ago.  They biopsied my heart again and we're hoping there's no early signs of rejection just like last time?!  My body is still adjusting to this bigger ticker and vice versa!  The O.G. organs and tissues are adjusting to the new pressures and increased flow while the new kid on the block needs to loosen up a little more and settle in to its new home!  The docs say all in all, everything looks great and we just need to hold the line!  While I'm still recovering, I know that I already have more endurance and that will continue to improve even more!

I'm missing my sibs but I think I'll get to see all of them next weekend for Father's Day as they have no activities?!  Until then, I'll be hanging at the Donho while the world influxes KC for the world cup - brown footballs are way cooler!   

                                               LOL!

                                   Retail Therapy Break

                                            

                                           

     

Sunday, 5/31/26

Hello!  Hope this finds you all well?!  I've felt better but maybe it's just cause I'm missing all of you and home?!  I want to go home in the world's worst way but know it will just take time!  The drs said that I could have some of these days, but dang - no fun!  I'm missing my brother playing baseball in Salina and Layla's dance recital, ugh!  Gemma's getting back from church camp today but she'll be busy with summer activities in Hays so I don't know when I'll get to see her again or Warren for that matter?!

On a positive note, Mom and Layla are doing the ol' switcharoo with dad later today after her recital!  I'm super excited to see my girls minus Gemma!  It's better than nothing and will be a nice change!  I'll spend the week with them and then we'll switch again next weekend after Warren plays baseball in Newton!  I don't have much else to report other than I have another scheduled check up on Thursday, 6/4 which we hope brings more good news and continued stability!

On one of dad and I's short excursions, we checked out the pop tabs operation at the Ronald McDonald Houses!  Talk about a lot of pop tabs - 4 tons collected in 4 months!  Please, please, please save those tabs as they provide lots of funding and support for this wonderful operation!  

All for now as I'm super excited to see some of my girls tonight, gotta go get ready!  I love you all! 

FRIDAY!!!

YAY!  We made it!  Today started out a little rocky to say the least with several phone calls to insurance and the typical runaround - I have nothing nice to say, so silence is golden!  On the flip side of that coin, you all worked wonders again with your thoughts and prayers - THANK YOU!  I got a call today from the transplant team and they said that my biopsies all looked perfect - they scored a 0 which means that there are no signs of rejection, whatsoever!  We're still waiting on the antibody results but that could be early next week before we hear on that?  

I received great news today and I am ever so grateful for the Good Lord above!  Dad and I were getting a little cabin fever so we decided to go check out Billie's Grocery that has a lot of gluten free and dairy free alternatives!  I can't remember if I've blogged to you how I was recently diagnosed with Celiac Disease or not but it's been a bit of an adjustment for us?!  I've always been a big foodie so with the transplant on top of the recent diagnosis, it's been a little trying to say the least!  It was nice to get out and go explore / try something new!  Billie's kombucha isn't near as good as the fam's back home though - just FYI!  Gonna kick back and relax to start the weekend off right. Lets Go, Royals!  Goodnight, I love you, God Bless!  

                                              Cheers!  
     

Thursday - 5/28/26

Happy Thursday - we can do it, only one more day to the weekend!  Today was pretty much a hospital day but a good hospital day with a lab draw first thing this morning and then check in for my heart catheterization apt at noon which turned in to more like noon mountain time!  Oh well, it goes with the territory!  The actual procedure only took about an hour and they were estimating an hour and a half to two hours so I ain't complaining!  They also went through my neck instead of my groin so I only had to lay still for 2 hours post procedure and could be elevated somewhat!  Time it was all said and done, we got our walking papers at about 4 bells!  When they go my groin, I have to lay flat and be still for more like 3-4 hours afterwards so this was a walk in the park!  

The docs said that all my vessels look good and patent!  My pressures are still a little elevated on the left side of my heart meaning that it still needs to relax a little but they're not concerned!  They increased my lasix a little to help with this but said it's totally normal when they do a transplant on a fontan (single ventricle) patient such as myself?!  Time will tell as I'll have another heart cath in two weeks (4 weeks post transplant) to re-eval?!  They biopsied the new ticker to put my new cells under a scope and check for signs of early rejection - they're to call tomorrow and give us the news?!  That being said, maybe throw a couple extra prayers my way if you don't mind cause I'm ready to spread my wings!  I know you will and know that I'll be praying for you cause we all got our crosses to bear!  

I'm feeling better each day for the most part but am excited for my steroids to start tapering off tomorrow!  I got the shakes, my insides itch, and my appetite is all over the place which they say is completely "normal"?!  Considering where I was and where I'm going, I got no complaints - thanks to you all pulling for me!  I miss you all more than you'll ever now!  All for tonight, blog atcha later!  Night, Night - I love you!  

    Me & Bernardo - my Squishmallow they were giving kids today!
      

5/27/26 - Hump Day

Hello blog readers!  Two weeks ago tonight, my family and I got the call that they had found a match for my heart transplant!  That was the ticket to ride this emotional roller coaster that we've been on ever since!  Everything is working out great and I'm stoked for the future but I can't help to think that I'm now two different people kinda rolled into one - God Bless this donor family wherever you may be! 

Early today was filled with tying up loose ends business wise and making plans for the next few days!  It seems as if we don't look down the road 1-2 weeks at a time, this boat ain't gonna float?!  My meds have to be slightly altered for my 2 week heart cath tomorrow at 12:30 and I'll have to have some labs drawn to check my medication levels.  I'm hoping / praying that everything goes smoothly tomorrow and everything looks good?!  

This afternoon we ran a couple quick errands and then got some sweet drinks at Dutch Bros for a little outing!  My afternoon got even better when my friend, Giana Schumacher and her family stopped by for a visit!  It was good to see some friendly faces and have some girl time - what a great way to wind down the day!  

I think I'll retire on that note and watch the Royals - hopefully we avoid a shellacking like last night....flipping Yankees.  Goodnight!  Peace and love to all!   

Exodus

Good day, mates!  Hope you're all having a great kickoff to summer?!  Mine is going splendid - I'm another step closer to going home yet this summer!  My family and I were praying for a call in May but never in a million years did we think it would be May of 2026?!  We were initially told that once listed, it could be up to a two year wait.  My family fought like gangbusters to get me on the list and I even had some help from our good friend, Jeff Seibel, and Senator Jerry Moran!  Senator Moran, you have our support and our vote 100%.  Many thanks to everyone for all your thoughts, prayers, and contributions - we are truly blessed!  

Today was busy with a couple last suture removals, IV removal, and meetings with various healthcare disciplines.  Mom and dad passed the test when it came to medication administration but they've been dabbling in that for the past 16 years, so that was a piece of cake!  The pharmacist came by and made sure that the pill box was big enough for the plethora of pills I'll be taking but that's just the cost of doing business I guess?!  As time goes on and I get stronger, the number will decrease but I'll always be on a couple anti-rejection meds that need to be taken at the same time each day!  Again, we are so grateful and often talk about the donor family that made this all happen for us - you will always be a part of our crazy family whether you like it or not?!  

They decided to hold off on the echocardiogram today and are just going to do it on Thursday, May 28th after my 2 week post-transplant heart catheterization.  That helped to speed up the checkout process today!  The time it was all said and done, we were dismissed about 1:00pm today!  Dad and I made our way to the Donho to unload all our things while mom and the rest of the crew got westbound and down.  We are semi-settled and the rest of them made it home safely, so another successful day!  It sure was nice to leave the hospital with my family and I'm excited to not sleep in a hospital bed tonight!  Time to say some prayers and get some shuteye!  Goodnight, I love you!  

                19 in the morning & 7 in the evening to be exact
         

                                 My circus, I mean family

                                         Donho, Day 1

                                               WOW!

Memorial Day 2026

Hello all!  I hope / pray everyone had a great Memorial Day weekend with family / friends and remembered those watching over us from our heavenly home?!  Hopefully tonight is the last night I blog from the hospital?!  The plan is to be discharged tomorrow after all the necessary paperwork and an echocardiogram!  Mom, Gemma, Warren, and Layla are heading west to begin all the summer activities!  I get to at least move out of here and take up residency at the Ronald McDonald House (Donho as we like to call it) for the next few weeks!  It may not be home but it sure beats dad's cooking!  Say what you want about McDonald's but what the Ronald McDonald House Charities does for people is out of this world!  My family and I are forever indebted to anyone that donates or contributes to this organization - THANK YOU!  Please save those pop tabs / beer tabs! 

Not a lot of info to share from today!  My family and I didn't kill each other in here yet, so that's a big plus!  We did have to delicately balance the solitude and the family circus but like I said, no one got seriously hurt and we're all still talking so we'll chalk that one up as a win!  The rents have been giving me my meds today and taking care of the incision that is healing up quite nicely!  I'm officially off all monitors tonight so they must be serious about this whole getting out of here tomorrow?!  I'm sure some here appreciate the chaos we bring to the table while others are probably quite thankful we're leaving?!  Either way, it's that time, so we're taking the show on the road!  Time to hit the hay, I love you, and I pray for you all as I appreciate all of you praying for me and my family!  God Bless.  

                     Guess nobody else really wants to leave?!  

                                            Sista salon

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