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