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…

Because why not? 🤷🏻‍♀️2023 is not leaving quietly.

In the past month, I’ve had…
A sinus infection 👃,

migraines 🤯,

Passed a kidney stone,

a reaction to Botox last week 💉,

a stomach bug over the weekend 🤢

and now a viral cold infection 🤧

…oh and I broke my toe and walked on it for 4 days. 🦶

All the viral/infection stuff is the reality of being immune compromised in the middle of cold and flu season. If you don’t want to be sick for Christmas, you might want to put a 😷 on. Everything is going around and the virus-that shall not be named-number’s are trending higher.

Let’s see, to follow up to last week-pretty much everyone has a different opinion on the Botox situation. Tx is in favor of not doing it again or at least only letting Hopkins do it. My PCP would like to premedicate with steroids and see what happens, rheum thinks it’s a hypersensitivity reaction (aka, he doesn’t know) and neuro’s response is still pending. I haven’t had a migraine since the Botox so I’m in favor of pre-medicating and trying again in 12 weeks, but we’ll see. We discussed seeing an allergist but because I’m on steroids, the testing would not be accurate.

We are looking into other ways to manage the migraines, like therapy to manage stress, massage therapy to relieve tension and pain, acupuncture which has shown benefits in studies and adding a combo of supplements in (riboflavin, magnesium, CoQ10, Vitamin D). We have about 10 weeks before the next Botox, so we have some time to figure out our next steps.

The end of 2023 and the beginning of 2024, is filled with a lot of followup appts coming up-

Dermatolgy for an annual skin check. My transplant meds make me ip to 200% more susceptible to skin cancer so we are supposed to be checked annually. It’s been two years since my last check so getting that checked off the to do list.

PSA: Ladies, don’t forget to schedule your annual exam.

My PCP – We have appts scheduled every 10-14 days to stay on top of things. We are hoping this helps us get out of crisis mode and into tackling other things on our list. She also does manipulation therapy, as a D.O. and this helps with pain management.

Hem/Onc-i am chronically anemic, so he manages that. We are also repeating a lung CT scan for some nodules we saw in April, to make sure they have resolved. They were an incidental finding on other imaging, but we need to make sure they have gone away, so another scan it is. I’m pretty sure I glow in the dark at this point.. Prayers appreciated, of course.

Endocrinology is also coming up. My insulin pump has a smart function which takes a couple months learning your patterns and responding with the correct insulin or turning off the insulin. Mine finally learned my patterns and we are staying below 250 for the most part, which is huge due to the steroids causing a daily spike. This appt we will tighten things up and get even better control.

Pain Management-we are doing a consult in early January to get my spinal cord stimulator removed. Its battery is malfunctioning which is preventing us from getting two MRIs my docs want. I don’t use it-so we are hopeful we can remove it and transplant gave the okay to do so-as it would require general anesthesia.

And then there is my silly toe. Mom’s bed post has metal at the bottom and I went full speed into the sucker with my big toe-breaking it. I thought I just bruised it and kept walking on it for 4 days. If you want to also ask, seriously? Seriously? We are right there with you.

Mentally, it’s been pretty draining and my holiday spirit is more grinchy than anything at this point. It always seems like something happens at Christmas time and our Holiday isn’t what we expected or wanted. And that’s okay, too, if your holiday isn’t all holly jolly.

Today, I’m super Grateful for friends who love and support us in big and little ways. Like our dear friend, who said let me take care of one thing and dropped off lunch today. And who reminded me, that even though it’s not clear how, God will use this for good.

I’ve seen God work miracles and take care of things big and small. So I am allowing Hope to win again and continue to believe He’s got this.

#becauseofJesusandaDonor

This week was a doozy. Monday night, my migraine got so bad, I was laying in the middle of the bed in the dark sobbing just begging for any relief. I had had the same migraine since Saturday and was trying to just tough it out until Wednesday, when I would finally get Botox again. Mom made a command decision and took me to the ER to get some medications.

We had met with a new local neurologist who also does Botox injections, the week prior to discuss him taking on my case. The reality is that some local doctors feel my case is beyond their scope and I don’t always get a warm welcome. But he gave us a warm reception.

This neurologist was knowledgeable about transplant medications and immediately identified my trigger, tacrolimus, and that since we can’t remove it, we have to manage the migraines. His office also has an infusion center that I can go to when I’m having a long migraine instead of the ER which will be much cheaper and hopefully help. The truth of the matter is that we have tried all options that are cardiac safe and I’ve failed every therapy. He is confident though that if I get on a regularly scheduled Botox schedule we can minimize how much they happen. We all agreed it’s much easier to drive to Reston than it is to Hopkins every 12 weeks.

On Wednesday, I received my injections in his office. Unfortunately, they cause me to have an inflammatory response to the toxin entering my body. I get a migraine within hours of the injections and my whole body hurts, muscle aches, joint pain, nausea, vomiting. I was up all night miserable. It wears off within a couple days and its benefits start to take effect but it’s rough. Managing one health issue, triggers another for a few days. Because I missed for a few months, my body wasn’t used to it, so this time my body’s. response was pretty bad.

Thankfully, I figured I would get a migraine at least and planned ahead by turning in my final paper for grad school this semester early this week. I can officially say, my first semester of Grad school is done! 🎉 looking forward to my classes next semester and also having some time off during winter break.

🎄 Mom and I are slowly tackling Christmas decorations. . We’ve also enjoyed finding a few thrift store Christmas treasures to add some new decor to the house. We are avoiding stores for the most part and did a lot of our shopping online early this year (perk of having endless time in an ER and a phone), hoping to avoid the holiday stress. So far, it seems to be working. I also feel like it is my duty to tell you all, that you can get flameless advent candles on Amazon with a remote and timer. Ours are on the way, because we are the worst at lighting the advent wreath. You are welcome, for this little golden nugget of knowledge.

We are also enjoying being home and having the time to tackle the little house things that get pushed to the side. We aren’t messy people but it’s amazing how quickly mail stacks up, things pile up, laundry gets back up, because we are dealing with the health crisis of the week. Our energy just doesn’t get spent on laundry and housework. But with Christmas decorations going out, it naturally leads to things getting put back in order.

One thing we’ve been keeping our eyes on is the date. On December 21, God-willing, I will not have been admitted to the hospital in a year. Only 14 days to go as of writing this. That is a huge testament to transplant, as prior to, I was admitted several times a month. Yes, we have had countless ER visits for a variety of issues, but never admitted. You don’t understand the gift it is to have doctors listen to you in an ER, listen to your team’s instructions, get you stabilized and okay to go home.

To be honest, December is typically a hard month for me mentally. I love Christmas and all the traditions it brings. But new years lurks right around the corner. And for someone with chronic illness, a new year comes with mixed reviews. “How far have I come? We didn’t really make much progress..that got worse. Will the new year even bring any change?” runs through my mind a lot.

If you find yourself there, for whatever reason burdens your heart, know you are not alone. If you don’t feel all holly jolly, that’s okay. Perhaps you aren’t meant to be united with the joyful alleluia of the angel this season. Perhaps you are meant to ponder the worry Joseph must have felt as the Holy Family fled? Can you imagine traveling with pregnant Mary and the son of God? I’d be a nervous wreck. I find myself feeling connected to Joseph this year…knowing the miracle about to unfold but knowing the path to get there. Wherever your heart is this advent season, sit with the manger and allow God to speak to your heart. Maybe you’ll find yourself as the shepherd, or even maybe the sheep. 🐑 I love sheep.

Just know that no matter the highs and lows that life may bring, you are so close to the infant Jesus this season. Take a moment to rest in his presence and find peace. That my friends, is how Hope Wins.

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

I am in a couple heart transplant groups on Facebook with thousands of other pre-transplant individuals, people on the list, recipients, caregivers, etc. People are able to ask questions. Recently there was a post, what’s the craziest question you’ve been asked and it was filled with 100s of questions, many of which I’ve been asked. So. I thought I’d share some of the most asked with you..

How are you not angry?

Mom and i have both been asked this..and to be honest, we have been angry. Remember, all the mama bear stories? We just don’t usually share when we are angry online. But for instance, Right now, we are angry with a bunch of my team, including the transplant team. I don’t have a specific Tx doctor overseeing my case, so when specialists run into dead ends, there is no one to pick up the ball and advocate for me. And that’s frustrating.

Have we been angry at God?

Of course. You don’t go through such a heavy and dark period for several years, without being angry with God. We’ve both handled it differently. It has helped to see how the knots become untangled in our lives and see where He was working to heal that Anger, but it’s hard

Have you met your donor?

I’ll let that sink in for a moment. I can’t have met my donor. I hope one day to meet their family, but it’s not physically possibly to meet the donor as they have to have met their maker for me to receive my gift.

Did they check to see if anyone in your family could be a donor?

Ummm….I simply responded that was not how it works for hearts.

Where did the other organs go?

I actually do not know. When an organ is available, multiple teams are notified based upon criteria in the list system. A team asks for any tests they want run to see if it’s a match. if they accept the organ, then the coordination begins with other teams around the country, on when they will accept their organ, as they do not all go to one individual. It is in a specific sequence. Generally, hearts and lungs go first as they have the shortest viability.

Did you take on any of your donors likes, dislikes, traits?

This is actually a really big discussion point within the transplant community. Some people swear by it, while it’s not scientifically possible. But, I will say after transplant, I craved fish. Before I could take or leave it. I also used to be an extreme grudge holder, now I just let it go and move on. Is it because I have a new heart? I tend to think my body was craving a specific nutrient when it wanted fish and I think I don’t hold on to grudges because of what I’ve been through.

Did you see a light?

This one cracks me up. I didn’t see a light when my heart was explanted. We are on bypass so blood is still circulating throughout our bodies. The closest I got was wheeling to the OR and realizing that there was a 50/50 chance the new heart wouldn’t restart.

How much did it cost?

I’m not offended by this. People are curious. Pre insurance-it cost between 1.6-2.0 million dollars. Our out of pocket, was somewhere between 15-20K. That’s for several weeks of ICU stay, the surgery itself and post op care. Now, each ER visit costs us about $400-$600 and Biopsies/Right Heart Caths run about $700. Hospital stays usually range from $2,000 to $5,000. The increased costs are due to the pharmacy costs of all our meds, the acuity of care we require and continuous cardiac monitoring.

What about your meds?

One of the realistic factors about being listed, is ensuring you have the means to take care of your heart, including your meds. the organs have to be given to the best candidate and that includes those able to take care of the organ. If someone can’t afford their medicine and not eligible for resources, the organ will not survive and therefore they may not be the best candidate. The transplant community is always evaluating the ethics of transplantation and I hope one day money is not a factor.

Medication is a big concern of teams and pre-transplant individuals. I take 26 daily meds + 13 meds as needed and it costs about $1000/month and about $12,500 for the year, with insurance for my daily meds. and about $500/year for as needed meds. This total is at the 3 year mark. The first year, when we are on even more extensive meds it cost over $15K.

What are some of the weird rules you have to follow?

At first, they seem overwhelming but then you get used to them. For instance, when cooking each ingredient must be prepped on a different surface and with new utensils. This is due to the risk of cross contamination. We have about a bajillon cutting boards. No gardening, no sticking your feet in the ocean, no lake swimming or public pools, no pomegranates or grapefruit, no fruits or veggies from outside the home are some of the ones that come to mind. This is mostly due to the bacteria concern.

Is it creepy/weird knowing your heart was in someone else’s body?

I wouldn’t say I’ve ever felt creeped out. If I really pause to think about it, it actually amazes me. It also helped that My transplant coordinator told me early on, it carried them through their life and now it will do the same for you. The minute the nurse let me hear it beat, it become mine/ours.

How long?

How long what? Just like you, I know not the hour our Lord will call me home. Hearts last on average now, 13 years. But some have had one for 20+ years. God willing, that will be me or I will be eligible for a second transplant if the need arises.

Most asked question by ER doctors? Was it drugs or genetics?

Nothing about my case follows statistics, so I’m an outlier when I go to ERs. When they want a quick history they ask the question above because those are the two reasons, that a younger person has a history like I do. Mine was all genetics.

My heart is heavy for anyone who has or does battle drugs, so I’m not offended by the question, because it’s a harsh reality and one linked to transplant. Sadly, there has been an increase in available organs due to the opioid epidemic and overdoses.

The #1 most asked question is…do you know who your donor is?

I do not know any personal information about my donor. I’ve written, but not received anything back and that’s okay. I remind myself, in order for me to get to enjoy my life with this gift, they are grieving someone they loved. It can also be hard for donor families, who may be angry that the recipient is still living while the donor is not. So, we remember to hold them in prayer and hold a sacred space for them in our lives and that’s enough for now.

That being said, my coordinator did tell me that I had a younger heart, as they tend to be the feistiest, when we were dealing with another issue.

To conclude,

Perhaps it seems odd to talk about a surgery that was 3 years ago. But the reality is, it’s not like other surgeries where you are fixed/healed. You accept a lifestyle when you accept a heart.

This isn’t just a 1-2 punch and things are good. Your doctors have concluded that no other treatment option will work besides giving you a new organ. You accept you are 200% more likely to develop cancer, you accept a lifetime of meds, and you accept a different type of chronic illness.

I often times read people being frustrated that their life isn’t like it was pre-transplant. I try to tell tell them gently, it never will be. But that it’s completely worth it all. These 3 years, are ones that were never promised and knowing what we know now, likely wouldn’t have happened. So I’ll write these posts for the girl who posted a few days ago she’s scared and wants to back out, I’ll write them for the post transplant newbie who wants to feel normal, and I’ll write them for myself, to remember. And I’ll write for each of you, so you can step into a glimpse into our story and see how God continues to work in it.

Never in question? That hope will win because of Jesus and a donor. ♥️

Next up: Biopsy/Right Heart Cath and Echo update…

The last time I saw my grandmother, or Nonnie, as we called her we sat on the floor and went through her treasure box and button box. She told me stories about the ones she remembered and afterward, we laughed as she sat on the end of the couch telling me stories of her childhood. These were the stories I guess I was finally old enough to hear. These were her most treasured stories, her gift to me. I learned I was more like her than I thought. Which is why my mother calls me by her name, Rose, when I am being stubborn.

She and I talked every Monday night, I’d call her on my way home from work, she’d tell me about her weekend. I’d tell her about mine and ask my biggest prayer warrior to pray for certain intentions.

On more than one occasion after that visit above, she’d say “I can’t believe you wanted to see the button box”. It was the time with her and the stories she told over that button box. And so a few months later when she passed, there was a note on that button box in her handwriting, “for Kristin”. Since then, the contents have been moved to a old milk jug and on display ever since, retaining the button box title.

A week or so ago I was looking for buttons, and mom suggested the button box. Blasphemy! I wouldn’t dare. But after a search high and low in the house, they were the only buttons we had.

I poured them on the bed sifting through them, hoping to find pairs. I found some. It was like time stood still that evening, as I looked at them…and it still didn’t feel right to use some. That night I was scrolling eBay on my phone half asleep and somehow ordered online a vintage American Greeting plush doll. She worked for American greetings, so I just knew that was Nonnie getting the last laugh on the button box, when I saw the notification the next morning.

I ended up not using the buttons, but those memories stayed with me all week. We were supposed to be at Hopkins for a week of appts and a biopsy to check on my heart. I woke up with a sinus infection Monday, had an antibiotic by afternoon and the side effects of an antibiotic even sooner. This carefully scheduled and coordinated week was a mess-all having to be rescheduled.

I looked at that dang button box again. To anyone else it looks a mess, but to me it’s the most beautiful mix of buttons I’ve ever seen.

Year 3 was a mess of a year, just like that button box.

…endless ER visits for migraines as we wait for a new med to come on the market

…an auto-immune diagnosis, only for a new doctor to disagree with the first one and request more testing. A medication that didn’t work and only caused more migraines.

…lab fails, over and over due to tired veins.

…infections, GI bugs, colds, the flu.

…specialists hitting the end of their treatment options that were transplant compatible and getting nowhere.

…some challenges we didn’t share..

And we had come into the year thinking (year 1-survive, year 2-thrive, year 3-live!)

And yet, year 3 turned out to be the messiest. Like that button box, looking back it looked like a bunch of messes. And yet it was the most beautiful year so far. It was the one where God continued to reveal “He is still good”. year 1 and 2 you are simply just trying to survive the craziness that you forget to look up.

Everyone wants transplant to be this beautiful tied up package.

But it’s not. It’s messy. hospital bills. Medications. Doctor visits, vitals, phone calls to the transplant office, messages to doctors. Its energy one day to not being able to get out of bed the next.

But in the midst of that it’s silly memes from your bestie that made you laugh out loud. It’s the random texts, “just thinking of you”. It’s your mom being there for every high and low. Its the dogs acting like goofballs that you laugh so hard you cry.

It’s been 1,095 days since my transplant. It’s been all things beautiful, messy, and everything in between. I never had smooth sailing pre-transplant or post transplant and as my PCP says “when you’re supposed to zig, your body says I’ll zag”. And yet, this year showed me my resilience.

It’s shown me God’s goodness, His presence, His faithfulness, especially when I look back. We stare too much at our own feet instead of trusting the hands and heart of His.

But I hope, I never forget that…

..somewhere a family grieves their loved one. And in Gods providence he saw it fit their story would live on through my heart. And so,

Grief and gratitude coexist in this story. It’s messy like that button box, but this heart of mine is the most beautiful and prized possession. And my donor’s heart is the best gift, I’ve ever received.

To my donor family, wherever you are, thank you. And to every blood donor who saved my life since, thank you. Because of you, I get the gift of beautiful and messy days. As a wise friend once said “not every day is good, but there is something good in every day”. And even on the hard days, life is still good. And so is God.

…Post coming up next: all the crazy things I’ve been asked post transplant like, did you meet your donor? How long does it last? How much did it cost? And some fun other ones…