We went to the ER 4 times in two weeks. I had every symptom of my heart attacks from pre transplant all over again…nausea, burps everytime I exerted myself, having to take a seat after I climbed the stairs and loss of appetite.

Every time that I would burp, Moms and my stomach would drop. it was so reminiscent, but each time everything would come back fine, EKG was normal, troponins were elevated but not enough to be positive to indicate a heart attack. I was in contact with Hopkins and was supposed to see them when it snowed, so it got cancelled. Everyone else sees snow and exclaims snow day, we see snow and we both think, “sh*t, what are we going to do if I have an emergency”.

Well we found out at 2am about 10 days ago. We called EMS, who came equipped with snow shovels and ice melt and a sledge hammer. Because of my history, any time we call, an ambulance and fire truck are dispatched in case they need to activate ACLS, advanced cardiac life support. While the ambulance team checked me out inside, the fire truck team was busting up ice, laying salt, moving mom’s car so they could get me to the ambulance.

When we got to the ER my troponin was elevated but still not positive for a heart attack and my labs showed my kidneys were pissed. And they gave me fluids, which was the worst thing they could have done. The ER was a little bit of a shit show until cardiology got down there to see me. He offered to send me home or keep me over the weekend for observation and do a stress test Monday. I stayed. Why I wasn’t transferred to Hopkins is a story for another time.

They managed symptoms all weekend and did an echo as we waited for Monday. Nephrology consulted and wanted to bump up my diuretic. Turns out she’s an expert in cardio-renal dual diagnosis and really smart. She felt the kidneys needed some more help getting the fluid out and that was affecting the Heart.

We made it to Monday and I did a nuclear stress test and I passed, no signs of ischemia or blockages. Then the cardiologist told me that I definitely had congestion. It turns out I was in heart failure, with my new heart.

Not expected, but not outside the norm, heart failure can happen in transplanted hearts. my PCP and I believe that a couple weeks ago when I had gout flare ups twice and we bumped up my prednisone to treat it, it caused me to retain weight and I got behind the 8 ball with my diuretics, not able to get the fluid off at my normal dose. This isn’t the first time post transplant I’ve gone into heart failure, it just was missed 3 times in the ER locally and continued to progress. So we’ve bumped up my diuretic to get some of this fluid off this week and we will repeat labs later this week to see how my kidneys are handling it.

So other than the excitement of that admission we are also making some changes…

We are also starting the process to taper off prednisone, which means that I should let go of some more fluid and once we hit 3mg in March, my body should also be able to lose some of the prednisone weight. It’s a little complicated with my joints and the fact that I’ve been on prednisone for 3 years, so we have to go down by one mg every month. Our goal is to hit zero, but we may have to stop at like 2mg due to my joint pain. We are hoping transplant will okay adding a small dose of a second gout medication that would help with this and hopefully allow us to get completely off. I’d ask for prayers for this specifically right now.

We are also looking into adding a GLP-1 and another Kidney medication that both have cardio-protective benefits. The GLP-1 would be to help with the diabetes and the heart, with the hopeful added benefit to lose some weight. The kidney medication would give my kidneys a boost, I was on it previously, but it was stopped and we are trying to figure out why from old records. There’s a lot of my team that has to weigh in on this, so prayers everyone agrees would also be appreciated.

I have to be honest this last setback and admission were hard mentally. I felt like I was screaming something isn’t right and no one was listening. It was just like all the hospital visits pre transplant.

Because of the heart failure, that caused extra weight to go on, I didn’t recognize my rounder face and body in the mirror. It’s hard to have a body that chronically has issues on the inside and not see the outside as flawed, ugly or broken. Body image is hard for me.

As I laid awake the second night worried about the stress test, I realized that I’d developed some social anxiety. It happened after my first heart surgery and I’m surprised it took me this long to connect the dots. The first part is I’ve become afraid to be alone in a store or out somewhere, as sometimes my symptoms come out of nowhere and mom is there to help. The second part, is I don’t want to go out because of germs. The third part is the hardest, I’m ashamed of all the weight gain prednisone caused and I don’t want people I know to see me. I don’t want people to think I’m not taking care of the gift I’ve been given. I tell myself I’ll see people when I’m this x weight.

I even avoid my general cardiologist because I don’t want to hear the talk. Yet, at the same time I know he’d help me come up with a plan. I don’t mind my transplant team because they know it’s par for the course, I’ve gained the average they see people gain.

This part of transplant isn’t talked about nearly enough. But I’ve seen men and women both struggle with their bodies post transplant. It’s traumatic enough having your heart replaced with someone else’s and then to not recognize your body afterwards, only adds to the struggle. Mental recovery from transplant is far longer than the physical recovery. My hope is that one day, this will be talked about more, resources more readily available and the shame of mental illness will be wiped away.

I don’t share all of this out of sympathy, but to let others know that healing is ongoing. My heart had to be healed in more way than one and this last admission allowed for me to see the places in my heart that still need healing. Physically? yes, but also mentally and spiritually. As I said my prayers from my hospital bed, I explained to Jesus I wasn’t excited to do this healing so please go gently and let us begin..

I’m choosing to cling to the hem of his garment, for even in those moments, Hope wins. ♥️

PS: don’t forget to wear red on Friday for Women’s Heart Health ♥️…and yours truly.

Well it’s night shift reporting for duty again. I had finally gotten my sleep schedule back on track and then had a gout flare up this past weekend which requires high dose steroids and then a taper. The high doses keep me wide awake at night, so I’m back to being on night shift again.

Seems like we can’t win right now….i had two trips to the ER last week in the middle of the night. We will call them “episodes”. I would suddenly get really sweaty, palpitations, chest tightness and nausea/vomiting. For the first time post transplant I took nitroglycerin sublingually to hopefully get rid of the pain. When that didn’t work, off to the ER we went.

They tried to admit me locally, until a bed opened at Hopkins the first time. The hospitalist was refusing due to the complexity of my case, cardiology was saying they were fine with it, the hospitalist was not listening nor willing to work with Hopkins team, so I said just let me go home. I had to sign out AMA or against medical advice, even though in the records it flat out states the hospitalist refusing to admit me. This isn’t the first time this crap has gone on. I have full confidence in the local ER docs, but the hospitalists scare me. I have 24/7/365 pager access to my transplant coordinators, so I felt safer leaving a hospital than staying. Go figure.

I had another episode last Friday so back I went at 5am. That ER doc was less than stellar, basically ran the blood work and said good luck. I was supposed to see the transplant team this week, but the snow cancelled all my appts, so we are trying again next week.

And then on Friday, my stomach also decided it wanted to be a part of the party and I’ve been on a liquid/soft food diet since then. We don’t even know what’s going on there.

And then Saturday I woke up with gout in my foot and couldn’t bear weight on it, so I’ve been stuck in bed for 5 days while the prednisone does the trick. Thankfully, Mom works from home a lot so she’s able to help me get up to the bathroom, etc.

And the past two days I’ve been dealing with a migraine, because the steroids cause high blood sugars which can cause migraines. So like, it seems like I can’t win this week.

When I want to voice my frustrations but don’t want to use profane language, I declare “Fritos and frijoles”. A gem from my youth ministry days, that one of the kids used to say..”Fritos and beans”. It allows me to voice the emotion and then it makes me laugh.

There was a lot of Fritos and frijoles, this week. I had to literally put a Hope background on my phone to remind myself, that this too shall pass. It might pass like a kidney stone, but it will pass. Did the phone background work all week? Nope. I threw that phone in the bed a few times.

It’s hard to live with chronic illness and repeat disappointment on how I thought I was going to feel or how the day is going to go. Especially when it’s a week of back to back issues.

Disappointment is a hard thing to swallow… I think that’s true for a lot of people..The disappointment of a friend ghosting you, or a test result that wasn’t what you expected, or even the conversation that took a hard turn in the wrong direction. Or the person that just won’t change.

But I watched a video (i can’t find it now), this week about this woman who had gone through a season of disappointment and she was a little feisty in her relationship with the Lord, kinda like me. It took her a long time but now in moments of disappointment, she mutters a quick prayer of “God, you must be up to something”. And she would do so in hope for the future and faith in His plans.

I so hope for better days ahead, but on the days of flares, headaches and “episodes”, I will choose to trust that “God is up to something”. That is when hope wins.

We sleep in shifts at our house. Mom sleeps like a normal person, while there is a 90% chance I’m falling asleep around 4am or staying up all night. Gracie stays with me at night so we consider ourselves night watch. Thankfully, we have a routine where mom wakes me up and brings my morning meds, so we stay on schedule.

Insomnia is pretty common post transplant as some of our meds cause us not to be able to sleep. It comes up pretty much every week in Facebook transplant support groups, with people desperate for relief and sleep. We’ve tried melatonin but it causes me to have vivid nightmares and triggers my PTSD.

Insomnia isn’t just annoying it can be problematic. The interesting thing is that migraines can be caused by not enough sleep or too much sleep so I’m constantly trying to strike a balance of getting enough sleep but not too much…basically insomnia leads to other problems, but it just comes with the territory.

In other news, I’ve been battling the crud since Christmas Day. Mom also caught it but she’s past it. Whatever viral infection turned into a bacterial sinus infection for me, so I’m still feeling yucky. My transplant team started an antiobiotic last week, so hoping to feel better soon. It pretty much requires me to fall asleep with an ice pack on my face due to all the pressure.

After battling a migraine for a week, we went to the local ER, one day this past week. I had the nicest doctor who listened, treated appropriately and explained that infections trigger migraines, so she wasn’t surprised. She wouldn’t let me leave until I was pain free and the headache broke. It was so nice to be seen, talked to and treated like a person. She understood that my multiple health conditions play into each other and it’s nothing I do or don’t do. I didn’t realize I needed it, but the visit was healing in more ways than one.

Speaking of migraines, my pcp added some supplements to my medication regimen that are supposed to help prevent migraines. I already take magnesium and Vitamin D, so we added coQ10 and B2 to the mix. She and I hope these 4 will calm things down. We’ve also talked about acupuncture & manipulation therapy as part of our treatment plan.

Supplements are not regulated like meds, so it’s important that you speak to your doctor about them and purchase from a reputable company. Adding these supplements takes the total number of daily meds to 25.

We head up to Hopkins next week to meet with rheumatology and see the pain clinic and transplant clinic. We are seeing pain for a consult to remove my defective spinal cord stimulator, which is preventing MRIs we need. We are then seeing my transplant coordinator NP, to get labs, check on things, etc. and we are having a rheum followup to discuss treatment of my joint pain.

In other news, we got the results back on the heart monitor I wore for a week and it was good. Because they don’t connect some of the nerves to the donated heart during a transplant, it isn’t uncommon for the electrical circuit of the donated heart to be a little wonky. Luckily, mine is just premature ventricular contractions (PVCs) and premature atrial contractions (PACs), which right now are benign. Basically, my heart sometimes beats out of rhythm by throwing an extra beat, but is able to get itself back on track. Of course, my heart would be extra, why not?

We’ve had a quiet couple of weeks here. We have about half of our Christmas decorations down at this point. We are getting through all the tasks that went by the wayside when we both got sick and we can see the kitchen table again. We had prepared some freezer meals at the end of December, so between that and delivery we’ve survived.

And of course, since it’s already January we have started the countdown to Moms Birthday in early February. She celebrates all month long and I love that about her. She knows life is to be celebrated!…Even if she is 74! Just kidding..someone asked her age and I couldn’t remember so I said 74 and it’s become a running joke. She’s still forever young!

Also a friendly PSA-please get your skin checked by a dermatologist. I had a pre-cancerous lesion removed at the end of 2023, and now have to be rechecked every 6 months. Wear your sunscreen. I’ve tried them all, so let me know if you need a suggestion. My top favorites are Clinique or Supergoop unseen sunscreen for my sensitive skin.

Lastly, as the year kicks off and you’re met with the same challenges, remember it’s okay to ask for help. One of my college professors, told us to figure out what battle we’d always fight for. For me, it’s going to be mental health. I’m deconstructing the lie that it can be prayed away. It’s literally a chemical imbalance in the brain. Yes, use prayer as a tool, but don’t listen to anyone who tells you to just pray more. (…steps off soapbox…)

While Therapists are in short supply, just know, I’ll always have the porch light on and a cup of coffee for you, if you ever need it. I’ve learned mental health and healing is just as important as physical healing.

If the church has never been or isn’t a place of healing for you anymore, please don’t step away from God. I tried that, I’ll save you the heartache, it isn’t pretty or worth it. Perhaps step away from that specific church, but not from God. I’ve witnessed far too many people try to get through hardship in the past few years, without God. No one wins. Hope doesn’t win in that moment. So if you find yourself, in the same place you were a week into 2024 as you were in the last week of 2023, don’t give up on yourself, on God or on others. God saw things in 2023 you didn’t, to prepare you for the path ahead in 2024. Let hope win and trust that He will guide your steps in 2024. Let us begin…