I’ve rewritten an update on things, five years post transplant, multiple times and it just doesn’t seem right. Mostly because, our summer was really tough, followed by an even more challenging fall for me and thereby mom.

Good news, my heart is stable. The bad news is that we’ve been dealing with new issues and new symptoms for about every other part of my body. I’ve been having lots of appts, tests/labs then follow up appts trying to chase down what’s going on.

It’s taken the wind out of my sails, and I find myself experiencing what those who deal with chronic illness call the October slide. Basically in fall time, unexplained by science but accepted amongst the medical community, those with chronic illness backslide mentally, physically, emotionally, etc.

So for now, we ask for prayers. And in time we’ll have answers and be ready to share. We trust in God’s faithfulness and we have a good team of doctors chasing things down, so we remain hopeful that Hope will continue to win.

Love, K

Hi everyone-

If you didn’t see on Facebook, I finished my masters from LSU on Friday. I promised an update on my plans, so here goes…

Also, please keep reading for a special prayer intention.

My Masters in Education, is in Curriciulum and Instruction, with a specialization in Special Education. Individuals with disabilities have always held a special place in my heart.

Time and time again, when I worked for the Catholic Church, I saw how churches were/are ill equipped to handle anyone with a disability, whatever the type may be. And probably 20 years ago, when I was a college intern at a parish, I had to advocate for a young man with disabilities, to be included in the program in a way that worked for him. That experience changed me forever. I am a firm believer that Churches should be open to anyone, especially means those with disabilities.

And so, after my transplant, I started to really ask myself what I wanted my mark on this world to be. And after much prayer and thought, the answer was to change how individuals with disabilities and families encounter God and experience church. My plan now is to begin creating curriculum, children’s books and a variety of resources for individuals with disabilities, using my knowledge from my undergrad, in Catechetics and theology and my newly acquired Masters.

But, that dream is on hold for a little bit…as I am headed back to the OR on Wednesday. If you don’t want to read about female stuff, skip ahead a few paragraphs.

Some of you may remember that back in 2017, I had to have an endometrial ablation. I had always had really heavy periods and was also on blood thinners at the time, which meant I essentially hemorrhaged each month. The solution was to do the ablation, which basically cauterizes the lining, so I would still ovulate, but didn’t bleed. The surgeon told me at the time, that it would likely need to be repeated, due to my young age and being of child bearing years.

A few months ago, I started to have some bleeding. After discussing with my transplant team and a few gynecologists the options were birth control or a different surgery. I opted for the surgery, as birth control has increased my migraines in the past and my PCP and I aren’t convinced that it didn’t play a role in the progression of my heart disease early on.

While the previous ablation, made child bearing, extremely high risk, this surgery will make me unable to bear children. Child bearing after a transplant is controversial, as there isn’t enough research on it. What we do know is that pregnancy introduces antibodies into the system, which often leads to rejection. And the meds I must remain on, often cause birth defects. Lastly, a pregnancy would be life threatening, if it were to happen.

So at the time of transplant; I agreed to not get pregnant in the future. This surgery will ensure that. And while it’s hard to know as a woman, that will never happen, I’ve also had the last ten years to grieve that. The decision for the surgery was made to address the now problem and the future, with a mister, someday.

And for those wondering about the morality of it, it has been discussed with many a wise counsel.

The surgery is supposed to be outpatient. My gynecologist wants to ensure I’ve come out of anesthesia okay, my heart is handling everything well and that my pain is under control, before he sends me home. But we are rooting for getting to recover at home. Cardiology gave the all clear a few weeks ago and my PCP gave a thumbs up. I’ve had some labs and they are actually looking good and the kidneys are behaving, so from a medical standpoint this is a good time to do it.

Recovery the first few days will be rough, but then it’s supposed to be about 2 weeks and then back to normal activity. The surgery itself, start to finish, is about an hour. Mama Bear will post an update.

We appreciate your love, support and prayers. We kindly ask that you would pray for a safe and successful surgery, my surgeons and for a quick and full recovery. You all remain in our prayers.

Look out this fall for a few more big updates, like have I started my book? How recovery went, what surgery is next, and all the other fun updates.

Always remember, that Hope Wins ⚓️

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.

Happy Heart Day/Rock the Red Day y’all! ❤️

It’s the annual day to rock the red today, in honor of women’s heart health! I thought it would be a perfect day for an update!

Now that we’ve made it through the 1072 days of January, we are officially in heart month. I can’t believe this year is 10 years since all my heart stuff began, and 5 years this fall since my transplant.

It’s been a tough road and one that has required resilience, strength, grit and a whole lot of grace. A lot has happened recently so thought I would share:

🫀Cardiology: my heart is overall doing well. I continue to not show any signs of rejection. In 2024, a lot of time was spent with multiple doctors figuring out the sweet spot on meds and fluids, to keep me out of active heart failure flares. I will always have heart failure, we just sometimes see it flare up requiring a Hospital stay to manage.

Praise: we have me on the lowest doses of cardiac meds possible, and things are stable.

Prayer: my heart remains stable, and hopefully some meds can be discontinued.

Neuro: oh my little noggin. Unfortunately, my migraines have changed their pattern and increased in frequency, requiring a lot of ER trips in the past few months. My neurologist is also concerned because some symptoms mimic a seizure and my EEG did not come back clear. He wanted to repeat it in 3 months, and that’s this week.

Praise: a neurologist that listens!

Prayer: we find the root of my change in migraines and that my EEG is clear.

Endo: my sugars are doing better, still not great, but better. We restarted Monjauro and my body is tolerating it much better than the first time. This helps my body be less insulin resistant, require less insulin, and I’ve begun to lose more weight. I still have about 30 more pounds of transplant/prednisone induced weight loss to go, but I’ve already lost 60, so we are making progress.

Praise: better sugar control, tolerating monjauro

Prayer: continued success with weight loss.

Nephrology:

The real divas for the last 5 years, my kidneys. They still are cranky little things and my baseline creatinine has worsened by a whole point, but my nephrologist has kept them there. We are still looking at a transplant, but the timeline has been extended some. I do labs every month for his review and see him every 3 months, with the phone in and I’ll get you in option available.

Praise: finally finding the most outstanding nephrology doc.

Prayer: that my kidney function would not worsen.

PCP: my primary care doctor has followed me for 10 years and she deserves all the praise and gold medals. She gets everyone’s notes and has to make sense of them. Lately, we are monitoring my thyroid function, which has decided to get worse and my anemia, which has remained in the almost need a blood transfusion range for months. We are now beginning a weekly injection, to stimulate red blood cells. I often experience shortness of breath, because anemia means you lack oxygen in your blood. The hope is this injection will help my anemia and I can feel better.

She also gets the fun of figuring out what latest illness I caught and how to treat it. We both love that I have no immune system. I currently have strep, but the less common strain, because why not?

Prayer: a period of stability

Praise: having a doctor who knows you, sees you and hears you.

The start of 2025 has been a doozy, I’ve had a different virus every week. But ultimately, we are seeing improvements in my health, even in the areas not mentioned. It has become more manageable, overall. On the tougher days, I listen to my body and slow down, and on the good days, I do something I enjoy.

I’ve had my donor on my mind a lot lately and I find myself thanking he/she for the opportunity to experience new things. It hasn’t been the easiest road, and when we selected Hope Wins as our mantra post transplant, we never knew the twists and turns life would take. I’d do it all over in a heartbeat (pun intended) just to experience life again.

If you aren’t an organ donor, I’d encourage you to become one. Or if you can donate blood, I’d encourage you to donate and save a life. For everyone in need is someone’s child, friend, cousin, special person.

And when you get the opportunity to live life, live it. Book the trip. Call your friend. Flirt with your crush. Forgive those who hurt you. Try something new. That’s when Hope Wins.

Y’all, I can’t. When he explained another surgery was on the horizon, I felt that air of hope deflate within me. My interior thoughts were “you have got to be kidding me” to “okay, at least we know what it is”.

It was actually Mama Bear’s idea to schedule this appointment. I’m not sure if she was tired of the middle of the night water running from baths trying to get relief or she too was fed up with doctors who kept telling us “let’s watch and see”.

Either way, she convinced me to call and get an appointment: I’d seen this doctor before and he had the nicest bedside manner that I’ve ever seen. And I see a lot of doctors. If he didn’t know the answer, he’d know where to send me to next.

And so we went. And waited an hour to see him. And then he was in the room all of 10 minutes.

When we arrived, they took me to get x-rays right there in the office. They wanted some fresh imaging for the doctor. At this point, I might glow in the dark from all the radiation and imaging I’ve had done in my life.

He came into the room, “this is 100% prolonged steroid use.”

Me: uh; what is?

Dr: you have AVN (or avascular necrosis). Jump up on the table and I’ll ultrasound you.

Me: I’d heard the term before but wasn’t sure Mom had. Trying to gather my thoughts, I laid on the exam table and he ultrasounded my hip. he said terms I didn’t know to his scribe and he explained that I had dead bone tissue due to lack of blood supply, associated with prolonged steroid use. Bad in the right hip and not as bad, but still bad, in the left.

I always knew it was a reality the longer I was on steroids, but didn’t think I had to worry. The pain had started about a year and a half ago, while I was still on steroids. I must have tweaked something, I thought. Yet the pain got worse and worse and reached its peak this spring. Looking back we were weaning off steroids, which is a powerful pain killer this past spring. So as the dose came down on the steroids, it only made sense the pain had gotten worse. I complained to my transplant team and PCP and it was always “let’s keep an eye on it” or we have to wean you off steroids since you’ve been on them so long.

We were talking about bringing in pain management but Mom kept saying, “what are we treating”..so she convinced me to see ortho.

I went because I was sick of being in pain and being gaslight, “you’ve been through worse, you’ll be fine”, “your 20 pain pills are lasting two months, let’s make them last longer”, to “we might just have to bandaid this”.

Bandaid what? The truth of the matter is there were days I couldn’t get out of bed, I didn’t sleep more nights than I did sleep, because of the pain, just getting out of a chair or going up the stairs once did me in, And venturing out on a “good day” meant I spent two days in bed because it hurt too much to move.

Mom, my dutiful lidocaine application nurse, and I were done. So when we saw ortho and he diagnosed AVN, I knew immediately what was next, a hip replacement.

Yes, hip(s) replacement(s) in my 30s. While not immediately, in the near future. We already know a kidney transplant is in the distance. I was expecting to just maintain status quo medically until then. Another surgery? Ugh.

Truth be told, I expected the diagnosis and treatment plan. But I was still very upset. Upset at my team of medical professionals, those that they allowed me to continue on steroids, knowing the risk. That it took me saying, I’m weaning off steroids, for it to happen. And ultimately, the very medication that helped my body not reject my new heart, was the same one that destroyed another part.

I wish people knew that with transplant we accept one risk to live, only to also accept a ton more risks to our lives and bodies. That’s why I share so much of my journey. It isn’t the transplant and recovery that’s the worst part, albeit the hardest.

It’s the lives and risks we take everyday after. Medications that nurses wear two sets of gloves for, because they are that toxic, we take every 12 hours. Suncreen people casually put on because they want a tan, becomes a necessity to lessen not remove our chance of skin cancer. Rules we follow, so the risk we take are mitigated, but never fully gone. Our lives are forever changed.

A young adult recently posted in a transplant support group, I’m struggling with my emotions since my transplant. I couldn’t type fast enough, you can be eternally grateful for the gift of your new heart, but also grieve what is, what was and what was supposed to be. I hope it brought her some peace.

And I too, couldn’t share this the past two weeks, because I too had to grieve another part of my body that has failed. I’m just barely 36, and have more scars than I can count. Nothing about this is normal. And there is more coming.

I wanted to be the girl who walked her two pups every morning, the girl who would go out shopping to find herself a deal on budget, the girl who’d go out with friends and meet Prince Charming along the way. And that isn’t my reality right now, and it’s okay to grieve that. For the transplant followers, it’s okay to grieve where you are at the moment versus where you wanted to be. Just remember you are 100% on getting through your worst days.

And for those of you who have followed since the days this blog was started, I hope you continue along. Triumphs over each challenge that comes our way, is when Hope Wins.

Hello friends,

I can’t believe it’s mid May already. It’s been an interesting first quarter of the year for us. As my transplant coordinator put it on the phone the other day, “you’ve had a really rough first part of the year”, and that is correct.

It’s only May, and we’ve dealt with the flu, stomach bug, UTI, strep, GI issues again, two hospitalizations for heart failure and so much more.

I decided not to share all the excitement that filled our first part of the year. Not only was there physical ailments, but looking back I was in a deeper depression than usual. Everytime I got sick or an infection, it caused my joints to become inflamed, which meant a lot of sleepless nights and constant pain.

In good news. We’ve finally figured out why my back always hurts, and it’s that my SI joint pops out of place. My PCP is able to do osteopathic manipulation (it is not chiropractor type stuff, which I do not trust), to help pop it back into place which alleviates the pain until it slips out again. That can be a week, two days, etc.

All that chronic pain wears on you physically. But in my opinion, mentally even more so. It can become hopeless very quickly. Not only does this chronic pain get triggered by infections, but also my migraines. I was on a good streak for awhile with no migraines, but we are back to almost weekly. Thankfully, we are trying Botox again in 10 days! (PS: life hack: can’t get into your doctor? Send him a direct message and watch his office call you in 24 hours! It’s even better if you mention transplant, they try to get you in sooner. One perk of transplant life).

In other news, we are officially on the last 3 weeks of steroids! After starting the taper in January, we are almost done. After 1300+ days and over 60 pounds gained, these suckers are almost done. I can’t wait to be off them and finally able to lose weight and feel better. This is a huge accomplishment. And the hard work of multiple specialties working to find other meds that work together to keep my inflammation in check! I think I might throw a done with steroids party for myself, mom and the pups they day we are done!

Speaking of weight, my team has approved trying monjaro, the diabetes injection. I am extremely insulin resistant, and this medication will help with that. The hope is that it will offer the heart and kidney protective features they are seeing as well as assist me in losing weight. This will help endocrinology with diabetes control and thereby help protect the heart. And my goal is to get back down to my pre-transplant weight. Let me just take this opportunity to ask a favor, don’t comment on how someone looks or their weight. You don’t know if they are on meds causing them to gain or lose, they could be suffering with not eating or eating too much as a coping skill. It’s just not okay. Unless you are someone’s doctor.

Take for instance this photo I reposted yesterday on Facebook. My face is so swollen thanks to the need to increase my diuretics. The next day, my face wasn’t so round and my leggings were loose. I love the sentiment about this picture, we’d made it to the 3 years post mark. But it’s really hard for me to lookout, because I don’t like the way I look. It took awhile for me to realize it’s temporary and part of keeping my heart safe, was taking the steroids. It’s hard each day to look in the mirror and wanting your face thinner, your belly flatter, your arms not flabby.

I’ve spent a lot of time grieving this body of mine, the transplant itself. But I’ve been asking God for the grace to accept what is and the grace to change what needs to be. Our Lord knows me and that we have to go slow, so for now, it’s finding excitement in no more steroids and the ability to take care of my body, one step at a time (literally).

The first four months were hopeless at times, but it’s in those moments that I envision Jesus carrying a baby sheep, reminding us he’ll carry us whenever we need, and that my friends is a place of hope, nuzzled in the arms of Jesus.

If you’ve been following along on Facebook, it’s been a roller coaster the past few months, but especially the last week.

In early January, I went to the local ER 3 times with chest pressure. I didn’t feel well and I knew it wasn’t another Heart attack, but something wasn’t right. I was sent back home each time, never admitted, nothing beyond blood tests.

Until the 4th time, during which I refused to go home. I was admitted for 3 days, they did a stress test (I passed), but my echo showed congestion around the heart. Sent home with a “increase your diuretics” and take it easy.

Only problem was that my kidneys were already signaling ‼️ “danger” ‼️ in my labs, moving more from cranky to angry. My Tx team, told me to watch my weight and diuretics and we’ll see how things go.

They didn’t go well and so I started retaining weight and my diuretics stopped being effective, because my kidney function was crashing. Your kidneys need to function to pass the fluids, diuretics help them do that. When they don’t work the kidneys get congested which backs up to the Heart

I went back to the local ER for the 5th time and they called cardiology. They were okay sending me home, but thankfully the ER doctor told me his gut told him to admit me and so he did.

They took me to the Cath lab the next day for a Right Heart Cath & Biospy (to check for rejection and how my heart was pumping) and a Left Heart Cath to check for blockages (all clear 🙌🏻). I wasn’t in rejection but my heart function had dropped.

They started IV diuretics and pushed the dose way to high, causing my BP to bottom out. They stopped one of my major cardiac meds to allow for the blood pressure to come up some while continuing the higher diuretics. This is when things really went downhill.

The nurses were holding the diuretic the last 2 days, i was admitted, because my BP was too low, without alerting the doctor. 🤬 they discharged me told me to take 3x as much diuretic I went in on and sent me home in kidney failure. Oh and that cardiac med they stopped, prescribed exactly to help heart function in transplant patients.

I came home sicker than when I went in. My PCP saw me 3 days later and was worried. She re-ran labs which didn’t look great, but we were heading up to Hopkins in 2 days to see cardiology so we talked with Tx, told them about the labs, and agreed we’d repeat them that Friday.

Oh, and we did. And they were really bad. My general cardiologist saw them first and expressed his concern, as they were edging at the dialysis level. We talked about a few things, agreed that my kidneys are top priority and then I saw my transplant coordinator.

She saw that the repeat labs that morning were still not good. I was told to hydrate and go to ER if symptoms worsened. I pushed fluids all weekend, and then I started having the runs (b/c why not). Not good when you are trying to hydrate.

Transplant teams have a different threshold than other doctors, because we can have really wonky labs, but then bounce back. But everyone was in agreement that I was on the edge of an admission being needed.

I saw my PCP again this past Monday, she took one look at me and told me to go to the local ER for labs and fluids and to be admitted. So we headed to the local ER on Tuesday am (because I selfishly wanted a good nights sleep).

We were fully prepared for an admission, but when I tell you there were tears when the labs resulted back at my baseline, there were tears. Mom and I both had our moment. Mine when I went off for test, hers while I was gone at said test. The labs should not have resulted where they did. My team all thought without an admission it would take weeks and even with admission it would take 2-3 weeks. But it happened in 3-days.

At the bottom line, my transplant team pushed the “wait and see” a little too long, things got behind, the local hospital messed up multiple times. I was a very sick young lady at home for about a week, and then with my team working together we righted things. This isn’t a story of doom and gloom, it’s a story of how fast things can change. And how Hope Wins, in the end.

I’ve never been scared post transplant. Worried? Yes. But I was never scared until the past few weeks. The talk of dialysis, the local hospital majorly screwing up my case and making me even more sick, labs in critical range. It was very scary.

I now have to do labs every couple days to monitor things, I’ve talked to my transplant coordinator every day this week, messaged with my PCP and still need to loop in my general cardiologist.

We’ve all had moments where it felt like the heaviness of Good Friday. That all hope was gone. But 3 days later, Jesus rose.

If you find that with life lately, you feel like a passerby on the road to Calvary….You can hear Jesus’ heavy breathe from carrying the cross, you can feel the dust from the road kick up as the cross drags along, you can hear the crowd, you watch Veronica wipe his face, you see the anguish in Mary’s face, I’d encourage you to sit in that place in prayer this Holy Week, so that you can experience the joy of Easter morning. And be filled with the Hope of the Resurrection, for that is ultimately where Hope Wins.

Someone recently said to us they were glad things were on the up and up…Mom and I just laughed, got frustrated and moved on…well I thought I moved on…

But the more I thought about it, the more it pissed me off. 2024 has been really heavy for us and really hard so far. I’d like a return on the first two months please. So I thought about, why’d they say that? And I thought about perspective..

Some of you might not know this, but I helped manage the football team in High School and the first year of college. We helped with equipment, uniforms, whatever the coaches needed. I loved it and wanted it to be my career- the coaches were even trying to help me find programs, that I could work with. As managers, we were always on the sidelines at games and practices. You’d hear and could almost feel the hard hits. You could feel the excitement on a good play. Once you’ve been a part of the sidelines, watching in the stands pales in comparison.

And so, I thought, perhaps this person is just a spectator to our lives, looking from the stands. And while we thought they’d be on the sidelines with us, it hurts that they haven’t. It wasn’t what they said, it’s what hasn’t been done.

If you are one of the few who’s remained right on the sidelines with us, seeing every hit, every foul play, seeing who else is standing there with us, and helping us get back up again, your perspective is different-even after 3 years my perspective is different. In one night in the middle of September 2020, we changed forever and would never be the same.

We’ve climbed some mountains in our lifetimes, been stuck in some storms, and so when I saw this quote about how grief is so much a part of this life, it felt like it captured what I’ve been trying to say. Each time another symptom comes, another setback happens, you grieve the part of yourself that you’ve now lost..

And so far in 2024, we lost the little ounce of stability we thought we were building upon.

We’re still trying to manage the Congestive Heart Failure, with a team that’s dropped the ball way too much, and a PCP whose wondering why she’s left managing it.. this setback is actually quite serious, especially when we don’t know what caused it..

We have now pushed too much diuretics that my kidneys are not just cranky, they’re mad. Nephrology thinks, I have cardio-renal syndrome-what ever happens to one organ effects the other, which means pissed off kidneys makes for a pissed off heart (see above).

My tacrolimus level came back double the level it should be, so I dealt with migraines for 8 days and then 11 days, until the levels came down. Thankfully both times we went to the ER, the docs understood and worked with me to start feeling better.

I am scheduled for Botox next week, which caused a systemic reaction last time. I had to email 4 different practitioners, to get an answer on a pre medication protocol, because everyone started playing hot potato, not wanting to give an answer.

Oh and now, I have some type of GI issue that’s going on. GI issues happen a lot to transplant patients, but my team doesn’t allow us to take meds for symptoms until we get our stuff tested for viruses, bacteria, etc. when you’ve already been diagnosed with IBS for 20 years, a GI bug is just rude.

Think of your immune system like a screen door, it can catch all the bugs and keep them out. My screen door has no screen, so all the bugs just come on in. The GI variety like to come in quite often. So to my fellow transplantees, new to the game, you always want to have baby wipes and diaper cream on hand. Just thank me later.

So, yeah, things aren’t on the up and up right now. Mentally, Mom and I are just waiting for the thing that sets me over the edge and into a meltdown. I told her today, I’m thrifting $10 worth of dishes and throwing them, to get a little frustration out. She laughed. I’m serious. The meltdown will come, and it will likely be due to something goofy, like Finley ate my crackers (100% likely what will happen). And it will be okay when the moment comes because being strong also comes with the “I am not okay” right now moments.

If you are a fellow transplantee, reading this, I just wanted to remind you- you are enough. What you are physically and mentally able to do is enough. You will have good days and you will have bad days. People will say goofy stuff such as “stay positive, stay strong, you’ve got this”, don’t let this invalidate what you’ve been through, when you had no other choice. Your ability to take a hit, shouldn’t be an inspiration, but many will see it as such. Your ability to lose every part of yourself and become someone new, that should be the inspiration. Who you were and who you are, that’s enough. And that should be the inspiring piece of your story.

Thanks to Jesus and a Donor, the ending of my story was re-written and chapters remain to be written. And even in a body with chronic illnesses and diseases, I am enough, who I was, made way to who I’ve become, and that my friends is how Hope wins.