I hope everyone had a good Thanksgiving. We had plans for Thanksgiving to do all the sides but with a chicken meatloaf because turkey is a lot for the two of us….we had plans…

Instead we were in my PCPs office at 4:30pm, the last possible appt, the day before Thanksgiving and I had a sinus infection. My transplant team trains us pretty early on, to be aware of any acute changes. We learn what our baseline “chronic illness” feels like and then they like to be notified if anything changes.

I woke up with horrible sinus pressure on Monday last week, so I called my transplant team, told them what was going on and that my home swab was negative. We decided with the holiday coming up and not seeing my PCP until late on Wednesday, that we’d send in an antibiotic for a sinus infection but not start it until my PCP confirmed. Which she did.

So our Thanksgiving plans turned to chicken and wild rice soup in the crockpot with a side of an antibiotic. It ended up being perfect. I’ve learned that infections, take me down harder because I don’t have the reserve to fight it. We are on day 10 of this infection and I feel worse then when it started.

On top of that, Black Friday, we were picking up some stuff mom needed for an event this week at work and I suddenly had severe flank pain, I’d noticed some blood in the urine a few days prior so I basically just thought my cranky kidneys were throwing a fit.

I had to wake mom up at 2am to take me to the ER because the pain was so bad, like rivaling having my chest cracked. One all night stay at the ER and I’d passed a kidney stone.

We both looked at each other, laughed and said you can’t make this stuff up! But at least we were home for the holiday. we mostly just chilled the rest of the weekend, I online shopped, got busted when the packages all started arriving and the foyer looked like every delivery service had delivered. To my credit, 5 of the boxes were the dog’s food that gets automatically delivered…and it’s not my fault that Amazon ships one item at a time. At least that’s my story and I’m sticking to it. and mom just laughs.

Anyways, Monday, woke up feeling like utter crap and now dealing with the GI side effects of an antibiotic and praying to the good Lord that it does not turn into C. Diff again.

At this point, Mom and I do a pretty good job handling these one two punches when they come. We laugh when things go awry, we snuggle under some blankets and watch hallmark movies when I’m feeling yucky, we nap after late night ER stays and we are grateful to have each other.

Despite the holiday not going according to plan, we made the most of it. We took our annual tradition trip to the recycling center with the pups and threw on our matching Christmas Pajamas. Im just grateful that looking back at how our story has unfolded has gifted me the ability to always laugh off the bad, smile through the good and remember that Hope Wins.

We had only been home about 5 weeks. My wounds hadn’t even finished healing. But we made the most of that Thanksgiving.

I was so fragile then, my immune system so suppressed so as to not reject my new heart. My mental health doing an obstacle course, tears usually just a moments notice away.

We drove down the road to the recycling center at the local high school. It was a mundane chore that felt like an adventure at the time. It was safe, no one else was there. we put our boxes in the bins, I walked a few laps around the parking lot and we went home. Actually, we probably stopped for a fountain Diet Coke.

But on the way there, tears had fallen. I grieved for my donors family. Their first major holiday without their loved one. One less place setting, one more serving still available of their favorite side dish that hadn’t been eaten. An empty spot in the photo where they once stood.

And I grieved for us, the missing people at our table, the life we now live, the crazy life that we just call everyday. There was so much gratitude that first year. I wondered this year, has mine slipped away? Having chronic illnesses to manage isn’t for the faint of heart, it’s ridiculously hard. I paused this week, in my frustrations, had I lost my sense of gratitude? It was probably 9 days of a migraine that made me question it all, but it took a few days for me to find my true answer.

I want to thrive and live not just survive. I’m 100% grateful for my donor and each Thanksgiving week since, I find my heart nestles into this safe place of happy with just being here. And then, I hope for even better health and that’s okay too. You can grieve and be grateful at the same time.

I know holidays aren’t happy for everyone. Families? Hello, #drama. But what if we simplified things this year. It changes everything.

If you told me in 2019, that the following year I’d be sitting at the table, with a new heart or that 3 years later, that heart is happy in its new home, I’d have called you a liar. Sometimes the trials of our life, prevent us from seeing the good, the gratitude amongst the grief. I know far too many people approaching this holiday with a year that wasn’t easy and trials that continue. We all have something. I hope this Thanksgiving, a little voice of Hope whispers to you, to keep going. Because, in the end Hope Wins.

Now…I’m case you need them..here’s some sure fire ways to survive a family thanksgiving.

1. The bathroom is your friend. Need a break? Gotta go! Need to scream silently? Grab that towel your mom hangs but no one uses, put to mouth and scream. take as long as you need and spray some febreeze for good measure when you leave 😉

2. Oh, I see they have the fancy napkins out. I encourage you to grab a paper towel, stick it in your pocket and head to the table. That paper towel is your saving grace. Funky stuffing? Into your paper towel. Burnt fried turkey? Into your paper towel

3. Practice your ABCs. This is actually an anxiety tool, but if Aunt sally wont stop going on and on and you might lose it at the table. Begin going through the ABCs. First round, name a person you know whose name starts with each letter of the alphabet? Then foods? Then cars? Sports players? By the time you toon back into reality, Aunt Sally is hopefully done.

4. Remember what is good for you, may not be good for everyone. Oh, everyone’s gathering at 1, eating at 4. Nope, girl, you go at 3/3:30. Your mental and physical health is just as important. Too many hours with the family and woah!

5. See #1. You’ve had enough? Lost your last ounce of patience? All that rich food is upsetting your stomach? Best get home to your house.

Have a fun and blessed Thanksgiving! Forever grateful for each of you.

This is the fourth week in a row that I’ve ended up in the ER. First week was for a migraine, 2nd/3rd were for my heart and this week was for another migraine. 💔

This week was almost harder than all the others. My neurologist finally got insurance approval for the last medication we can safely use to stop a migraine and it didn’t work. Like not even a little bit. The pain was so severe, I couldn’t sleep. After being awake for 36+ hours, I caved and went to the ER. Caved or went after Mom told me to stop suffering and she would take me? Votes still out on that one.

The reality is that ER visits are mentally triggering for me. I have PTSD from horrible visits where Doctors didn’t understand my case and instead of properly assessing and treating me, I was labeled a drug seeker and dismissed. I never know what kind of reception, I will get. Thankfully, we have to alert the Transplant Coordinators everytime that we are going to the ER so they can call ahead, which usually helps things go smoother.

Locally, most of the nurses know me, mostly due to being what I call a “medical zebra” or having a rare case. They remember the facts of my case, that I’m a hard stick and am a “legit chest pain” more than my name. But it helps to have nurses that know you, they are the ones at the bedside pushing meds but also providing comfort through their words and actions.

Thankfully, the last 3 of the 4 ER visits, I’ve had excellent doctors and nurses. The doctor yesterday had treated me before and knew part of the reason we needed to get things under control was so that I could safely keep down all my meds. She kept checking on me, followed Hopkins Protocol that they’ve given the local hospital to use and made sure I felt I could keep things down before I left. I don’t often have that experience.

That’s why I think yesterday was so hard. The fact that last med that we could use to manage chronic migraines that was also safe for me not working, means we have no other options to use. I don’t share this for pity. But the reality of having a heart transplant is that it automatically limits you to treatment options that are too risky or interact with non-negotiable transplant meds. We aren’t just managing a heart transplant but lots of other health conditions over here.

Disappointment seems to be the thing I’m wrestling with the most. Disappointment in my team of specialists, who just keep coming back with “I’m out of options”. Disappointment, in my transplant team for a few different reasons. Disappointment in my PCP who took on a new role and whose attention to things hasn’t been great. Things seem to be continuing to progress because we aren’t finding good and safe treatment options.

My PCP admitted to me last week that she thought the transplant would make life easier and that she felt hopeless when all these things kept popping up. New arthritis? Great. Lower back pain for 3 years that hasn’t resolved?. Super. Migraines we can’t get a handle on. Lovely. cranky kidneys? Why not.

When she said it, I was almost taken aback. I’ve kept going, frustrated and disappointed because there is no other choice. I didn’t survive them removing my heart and giving me a new one, to not go down swinging. At times, it’s felt mom and I are the only ones holding on to hope. One of the ways I honor my donor is by continuing to keep going, holding on to hope.

But is it disappointing when treatments fail? 1000% times yes.

Is it disappointing when some of the smartest doctors say “I don’t know”? Yes.

Is it disappointing to deal with some level of chronic pain everyday? 100% yes.

Is it disappointing to have multiple illnesses that are unreliable and plan ruiners? Also, yes.

So what do I do in a season of disappointment?

First things first, I need time to process it all. When I’m ready to talk, I will but not before then.

Second, I’m in constant contact with my transplant team and specialists. They know what’s going on and sometimes we’ll make small medication changes or brainstorm, before the next appointment.

Third, I’m not afraid to give my disappointments to God. I usually throw a temper tantrum and then feel better. Sometimes, prayer looks like a daily devotional and sometimes it’s some choice words.

Four, I do things I enjoy. I’ll work on a project, go thrifting, work on schoolwork, enjoy a small treat. Those things are reliable and don’t disappoint me. Hooray for therapy and developing coping skills.

Lastly, I let my people in to walk with me. Mom knows to give me space and then I’ll need to talk about it. My bestie knows to send me goofy memes to make me laugh. Those two have walked through some of darkest times with me. find your people who will walk with you in sunshine and in storms.

We’ve all experienced disappointment at some time in our lives. Whether it be in a person? A situation? With God?

But that’s why I believe hope always wins. The faith that something greater is possible. Does hope change the fact that right now, medically things are complex and not making much progress? No. But it changes me. It gives the ability to keep going.

I don’t want to be known for the fact that I get back up again every time. But that I clung to Hope and to the One, who will ultimately be the Healer.

Two weeks from today is Thanksgiving. Perhaps in this season you find it hard to be thankful or just don’t feel it this year. Trust me, I’ve been there. But find one thing each day you’re thankful for. Write it down. Today, I was grateful for a good nights sleep last night and for each of you, walking with us in this story of Hope.

#becauseofJesusandadonor