It’s hard to believe, but later this month will be 10 years since my first heart attack. The one that I shouldn’t have survived. The one where the doctor wasn’t sure I’d walk out the front door alive.

There is something about 10 years, that makes it feel different. The big year milestones make it real: I look back and see everything that happened, 5 more heart attacks, over 30+ trips to the Cath Lab and a Heart Transplant, just to mention the heart stuff, and see God working through all of it. Did I see Him in the moment? No. do I now? Absolutely. I wasn’t supposed to survive 10 years, according to cardiologists, so I’m eternally grateful for my donor for being a part of the story that got me to 10 years. And I’m honored to carry a part of their story, into this world.

It’s been a crazy 10 years, so I figured it’s time for an update. Things with my health are actually stressful at the moment, so here goes.

I’m writing you from a local infusion center, where I am receiving the first dose of an IV migraine preventative that my neurologist wants to add to my migraine regimen in addition to Botox. Migraines continue to plague me, thanks to Tacro, my anti rejection med. He doesn’t have any more meds to treat a migraine to try, so wants to try adding another preventative medication.

At the end of May, I am scheduled to have surgery to remove my broken spinal cord stimulator. Many specialists want MRIs which we can’t do with a broken spinal cord stimulator. Recovery is about 2-3 weeks. My neurologist is the most anxious to get it removed so that he can get some fresh MRIs of my brain to make sure nothing else is causing my headaches.

Nephrology: I saw my kidney doc yesterday, and overall my kidneys are maintaining their level of crappiness. However, he was very concerned about my anemia.

Hematology: For a while, we thought my anemia was due to my kidney disease. But we now know it’s iron deficiency anemia. In the words of my nephrologist, “you have zero iron, I need you to get truckloads of iron”. And so we are doing 5 weeks of iron infusions. The last time, I had one it caused the most severe headache, that happens in like 4% of patients. He hopes spreading out the dose will help. Prayers please. In increasing my iron levels, he can restart a medication that is meant to help anemia and the kidneys.

Also of concern to several of my doctors, my hemoglobin and hematocrit are extremely low, and dropped significantly lately. They all believe I am bleeding from somewhere, likely somewhere in the GI tract. They referred me and got me in for an appt with GI next week, so we can get an endoscopy and colonoscopy scheduled to check there first.

This + my anemia (no oxygen rich blood) can be taxing to the heart, so prayer appreciated. They are also ruling out another diagnosis after an abnormal lab value.

Endo: we continue to manage medication induced diabetes and try to find a GLP-1 that my body likes. So far, not much success. Recently, my PCP, asked me to reach out to my endocrinologist to ask her to order some labs for possible adrenal insufficiency. It includes testing for cortisol and another hormone. They both resulted low, which makes us think I do have adrenal insufficiency. Treatment? Going back on steroids. My endocrinologist got the labs Monday and wanted to speak this week, so I have a virtual appt Friday.

This all started, from an ER visit where I was convinced that my appendix ruptured. Every month or so, I experience excruciating abdominal pain that is a symptom of adrenal insufficiency and another condition that hematology has to rule out. We hope this leads to a diagnosis and treatment of the awful stomach pain. And I don’t get periods, so it’s not that.

Cardiology:

Overall, things are stable with my heart. I have been experiencing palpitations and low blood pressure. But now, we are thinking that could be tied to my anemia.

The good ol’ cardiologists are pleased with how things are going and we are just watching symptoms for now:. September will be 5 years since my transplant and will include a trip to the Cath lab to check all the major arteries. But we have a few months before that happens.

Ortho: I injured my foot about 4 weeks ago and it’s the most random thing. The pain moves around in my foot day to day. On steroids, I have no pain, but the minute I taper off it returns. It’s so weird but I see Ortho next week.

Psych: there are days when depression wins or pain takes over and I have a chill day in bed. Anxiety has also picked up, so also trying to manage that. Trying to be faithful to a prayer time, seems to be helping manage both. But it’s also a reality of chronic illness.

There are a lot of moving parts right now and trying to figure out what speciality goes first can be stressful. I have spent a lot of time scheduling appts, going to appts, getting followup testing, etc. and it’s exhausting.

I was also admitted Easter Weekend, so yet another holiday wasn’t spent as we planned. Despite the crazy, mixed up days we’ve been experiencing, there are still moments of joy. Moments where we laugh, we smile, we say what the heck just happened to each other? Bird in the chimney? AC requiring a service call? Why not? We’ve embraced the unpredictable.

We may not know the chapter God is writing right now. But we know the ending of the book, and that’s when Hope Wins.