Hey Y’all-

What a week, and it’s only Wednesday!

We spent 6 hours at the local hospital on Monday for some scheduled GI testing. I had to drink a bunch of Barium and then they took imaging every 30 minutes. We got the results back the same day and everything looked good. My poor GI doctor now has to scratch his head even more about what is going on.

Then on Tuesday, we drove up to Hopkins to see Rheumatology. I’m seen by the fellow clinic, which is a doctor who has completed his residency and is doing specialized training in a field. they are overseen by an attending who is consulted, comes in, examines and discusses the plan. One of the interesting parts of being seen at a teaching hospital, is that they like to have those with complex cases be seen by those in training (but always over-sought by an attending). I can’t say it’s ever compromised my care, but I think actually enhanced it. I had a cardiology fellow suggest a test that we would have never looked at, that led to a diagnosis.

Anyways, back to Rheum. The medication they were using, methotrexate, is considered to have “failed” at this point as I’m having so much pain.

What was more concerning is that it turns out it’s also toxic to the kidneys. My Kidney function is stable-y crappy. We know that dialysis/kidney transplant is in the future, so we want to do everything we can to protect the kidneys. Also, the fellow explained, given my crappy kidneys and the fact that this medication is cleared by the kidneys, I actually had higher levels of the medication running through my systems-which was contributing to my migraines.

So now, the plan is to wean off of it. They are reaching out to transplant to see if we can try a new medication, plaquenil. While we are tapering off the methotrexate and the levels trend down, at the same time the plaquenil will be increasing in my system. We are all crossing our fingers the timing will be right and this will work as we have planned.

The fellow was quite honest that my symptoms aren’t following a linear pattern to a diagnosis and that the initial diagnosis doesn’t seem to fit. Given all my other health conditions, as the attending said, my case is a puzzle. The heart always supersedes everything else, so a lot can’t be used with transplant medications.

As the fellow (doctor) said, “we are in a tough spot”. He warned me that it’s going to be a tough 3 months as we do more testing, get off the one medication and start using the plaquenil, assuming transplant approves it. We don’t know if this will work.

It was a good news/bad news situation. He expects my joint pain to be worse with these changes but we have this new medication to try. Maybe you’ve experienced joint pain but I never appreciated what arthritis really feels like. It is p.a.i.n.f.u.l. And I never know how I’ll wake up feeling. Plans? What plans? It’s a day by day decision.

It’s also equally frustrating that so much of my health conditions play into each other. I will always be grateful for my transplant. But I wasn’t aware that it limits what doctors in other specialities can do. I often hear, “I’m at a loss, I don’t know what our other option is”. This reality can be a robber. A robber of hope.

Do I wallow in that? No, do I allow myself to feel all the emotions? Yes. it usually takes a couple days and then I get back up, thank the Lord yet again and fight to live another day.

With my 3 year anniversary coming up next month, I find myself thinking of my donor even more often. They must have been feisty, because now, I don’t settle. Oh, you don’t know what to do? Who else can you talk to? What else can we try? I don’t have to waste and neither do they-lets get this show and plan on the road!

Me, the stubborn one + a feisty donor means we will keep on pushing my team for better answers and treatments. Because, even when we hit these road bumps, I refuse to let it be the end of hope, because in the end Hope always wins.

I didn’t know I would be having a transplant in 2020. I went into the hospital for fluid management, my heart wasn’t responding to my diuretics anymore-which meant it wasn’t pumping as well. I was being admitted for IV diuretics which work better and to be monitored. Except I was sicker than we thought, and 18 days later I received my new heart.

I was thrown into the transplant world. Oh, what I wish I knew.. so for the soon to be/newly transplanted, here’s a few things I’ve learned so far….

#1: the surgery is just the beginning. You’ll be back in the hospital that first year, more times than you can count. and you will have more appts than you knew was possible.

#2: transplant isn’t a cure, it’s a treatment option. It brings on more issues than you could imagine.

#3: everyone knows the side effects of myfortic/Cellcept post transplant. Your GI system will hate you and you’ll probably crap yourself a few times. Be sure it’s the night you have the really cute, single male nurse.

#4: there will be moments you laugh and moments you cry. And then there will be the day, a knocked over glass of water causes a meltdown, because that’s not really what you are upset about.

#5: Remember Casper the friendly ghost? Yeah? Buckle up, because you are going to get ghosted by people. you’ll learn who your circle really is.

#6: your life will be lived by a clock. You will have set times to take meds, at first it will be about 4 times per day. There is no more sleeping in, time for morning meds. Rise and shine! Export tip: more of a night owl? schedule your meds later, just make sure they are 12 hours apart.

#7: ER doctors will find your case fascinating and you will answer lots of questions. Hospitalists..not so much. They will be afraid to make the transplant team mad. They’ll coordinate the specialists, but transplant will run the show.

#8: Meds. You’ll be on meds to take care of side effects of other meds. It’s not uncommon for Tx patients to take 30+ pills a day. You’ll get used to it. Find a system that works for you. Get a cute pill case. Add some decor to it.

#9: you will no longer carry a small purse. You’ll want to carry a spare dose of meds. Oh and then all the PRN stuff: glucose tabs, insulin pumps for the steroid induced diabetes, nausea meds, Benadryl, you name it, it’s in there. You now carry a small pharmacy-oh and papers. Lots of papers-your med list, all your doctors contact info, a brief medical history, allergy list. Oh and don’t forget to have the transplant teams contact info on every page.

#10-sleep is notoriously hard to get post transplant. It’s the mixture of our meds and they keep us up more than half the nights. You’ll get a lot done between the hours of 12am-5am. And then you’ll take a short nap.

#11: everybody and I mean everybody, will want labs. You’ll know the phlebotomist at every lab who can get your vein, by name. you’ll be able to tell them where to go. Left arm -gotta go high or low.

#12: people will call you strong and resilient. It will rub you the wrong way at times. You’d rather not have gone through everything you did, to be known as resilient. But in time, you’ll be able to give yourself credit for all you got through. Take your time with this, you’ll get there.

#13: if you were type A before you will be type AAA now. You will manage-all your specialists and appts, you will keep track of when your meds need refilled and by what pharmacy (#always get your immune suppressants and anti-rejection meds from you transplant center). Keep a running list of your vitals-keep notes of symptoms and med changes. Electronic is better so you can just message it off to your doctors.

#14: You will have a support person/caregiver who will be the real MVP to your story. They’ll keep you on time with meds, make sure you eat, remember things at appts that you’ve forgotten, run and fulfill your random requests and so much more. they’ll laugh with you at 3am when you can’t sleep, wipe your tears when it’s all to much,m and be your biggest supporter.

#15: that first year your goal is to stay alive and survive. The second year your goal is to thrive-not just survive. And the third year-your goal is to live. Transplant won’t be at the top of your mind 24/7. But your life will now be viewed as before transplant and after transplant. You’ll start to live.

#16-you’ll catch yourself sometimes thinking how crazy science is that you now have someone else’s heart that is now yours. You’ll realize your transplant team has an incredible responsibility and that’s why you follow so many rules.

#17: no more sticking your toes in the ocean, no large crowds, certain foods are now a no-go. All to protect you from an infection your body might not be able to fight and rejection.

#18: rejection is scary, but germs are scarier. Rejection can most times be treated, but germs and infections could take you out.

#19: you’ll always want to be clean. You never know when you’ll end up in an ER or admitted. You’ll keep a go bag packed-change of clothes, deoderanf, brush, toothbrush, phone charger, dry shampoo.

#20-Hope (always) wins! There will be days that you’ll feel so crummy, you don’t think you’ll ever feel good again. But you will. I promise. Hold on to hope, that tomorrow will be even just a little better.

I promise you’ve got this. I promise your caregivers got this! I promise Our Lord’s got this. In the moments of good, thank God. And in the moments of desolation, pain or just not good, seek consolation in Him. If you can’t see his plan, remember you can always trust the heart of God. For he is good.

Oops, it appears I’m on the post every 6 months plan. So much has happened since that last post.

Let’s see, the year started off really bumpy with GI issues of unknown origin for about 4 months. I’ll spare you the details, but GI has joined the party of specialists on my case, as symptoms resolved for about 6 weeks and then returned for another round. We don’t have final results yet, just theories. We did have some lab results concerning for a neuro-endocrine tumor which earned me a trip to see Hematology/Oncology and Pet Scan, but we got those results this weekend that no tumor was found.

On top of that, I had my first experience with gout, as the GI issues threw my electrolytes and body all out of whack. We looped in Rheumatology who started meds, but then we officially had to add on Nephrology, as my always cranky kidneys were really angry. And, angry kidneys make the transplant team nervous.

We really liked the nephrology doctor, who had taken time to read through my records beforehand. He was pretty honest, that dialysis and a kidney transplant will very likely be a part of my story, especially since the kidneys and heart work so much in tandem. He plans to follow me in clinic every 3 months, with consistent labs. His goal is to keep them as healthy as possible for as long as possible before we have to start more extreme measures.

From a heart perspective, my last biopsy got cancelled at the 2.5 year mark, so we think my next one will be around the 3 year mark in September. Can you believe it’s almost been 3 years?

Anyways, my biopsy last October, showed no rejection and I’m not displaying any symptoms, so we presume all is well. We’ve finally gotten my fluid status, my blood pressure and heart rate controlled with the right medications. Unfortunately, a lot of those meds cause insomnia, so sleep is still very elusive here.

We also have gotten my arthritis under control with medications, including prednisone. The goal is to wean off prednisone over the next 6 months. It still causes me to be very insulin resistant, so it keeps my endocrinologist and I in close contact. She was able to get a new insulin pump approved by insurance that has smart technology. It works by communicating with my continuous glucose monitor, and based upon my blood sugar, it either holds insulin or gives insulin to stay in the range we set. My Endocronologist and I are having much better success preventing highs and lows with the new system. It also allowed me to lose 40 pounds since January. Several more pounds of steroid-gained weight to go, but we celebrate victories over here.

From a mental standpoint, I would say things have improved as the year has gone on. We had so many bumps in the road to start 2023, after coming off of a rough 2022, that it took a little time to wade through all that.

I find myself in a place where I trust Gods heart, even when I can’t see his hand or his plan. Finding rest in that place again, has brought great emotional and spiritual healing. The Lord has whispered yet again to my heart, “Hope wins”.

Mom and I have masked up and ventured into thrift stores when there is no one else there. We’ve scored lots of bargains and enjoyed refreshing the decor around the house.

We’ve had some ER visits and lots of appts, but we’ve gone 6 months without a hospital admission. It’s been so nice to create each room as our own with our thrifting finds, since we are finally home to able to enjoy it! We’ve also had fun selling some of the old stuff around the house on marketplace, poshmark, eBay, etc. which funds our thrifting and we’ve even been able to use some of the funds to pay some medical bills.

Its still always something here, but we’ve actually been able to find peace within our four walls, find rest and have some fun these last 6 months. My team would like to see some more stability, but overall is pleased with progress and so are we. I feel like my head is always on a swivel, in contact with the pharmacy, doctors offices or at an appt. But we’ve found our groove in post-transplant life. I couldn’t do it without Mom, she’s still a rockstar. It’s a team effort and we get it done.

Please continue to pray for my continued health and for wisdom for my doctors. And keep my trusty sidekick and her intentions in your prayers. She’s the real MVP.

I’m promise I won’t go another 6 months without another post. 😎

Always thankful for my donor, #becauseofjesusandadonor, #Hopewins.

I hope everyone had a great thanksgiving, is having a great start to the Advent season and looking forward to the holidays and new year. Last time we chatted, it was pre thanksgiving. We had a quiet thanksgiving at home, watching hallmark movies and putting up Christmas decorations.

The week of thanksgiving we had two days of plumbers at our house to fix a water leak, which turned out to be going right across the yard. Then because that wasn’t enough, our cable went out and the only channel that would come in was the Hallmark channel. Its only funny because I used to give my resident “loves everything hallmark” channel, mother, a hard time about hallmark movies…do you think the leads will fall in love? Yes. Big town girl meets small town boy? Yes. Even Mom was getting sick of just the hallmark channel by the end of the week. We spent two hours chatting with a tech running tests only to have him go test something and never come back. Round two of trying last week resulted in all the channels returning after new cable was run. If one more thing in this house starts to malfunction, we are packing our bags for the bahamas. dont worry, we will send postcards. 🙂

Anyways, so last week, I caught the crud again. My team had me tested for rona/flu, but it was negative. We think I picked it up at the ER the weekend of thanksgiving. I had another run of palpitations, chest tightness, sweats, nausea, so we went and got checked out. My labs showed my electrolytes were off, my kidneys were struggling and I was dehydrated. A few hours and some meds later we were on our way home. Who needs sleep anyway? Whatever virus I picked up last week, took me down hard. I would sleep at night, get up, do breakfast and meds and sleep the rest of the day. Being immune compromised, means we are more susceptible to picking things up, but it also means we go down harder when we do get sick. We were able to manage at home, but in close contact with the Transplant Team.

This might be a good time to explain why we are still so careful, as people have asked us many questions. Any infection increases the risk of rejection. It also is not uncommon for the immune compromised to be resistant to medications/antibiotics for an illness and therefore the infection takes over and the body cannot fight it. I have heard of too many fellow transplant recipients who lost their life due to an illness. Some were as young as months out of transplant, while others were many years out. Oh hell no, that is not happening here.

Anyways, I finally started to feel better the end of last week from the crud, only to have severe flank pain and uh, difficulty voiding start over the weekend. So last night we ended up at the ER at 1am after consulting with my PCP, to make I didn’t have at UTI or Kidney infection. We were home by 4:30am, with preliminary results not showing a UTI, but it was being sent out for a culture and we are waiting to hear back. Both my PCP and the Tx team are concerned that I have an infection somewhere in the urinary tract and we will start antibiotics if the culture shows anything.

My kidneys are just brats. My labs the weekend of thanksgiving showed that my kidneys were not functioning well enough, so we backed off my diuretic for a few days. That resulted in gaining weight and then having to restart it at a lower dose, in the hopes my kidney function would bounce back/improve. Well my labs last night, didn’t show any improvement in my kidney function. I talked to my Tx Team two times today, because the low kidney function is what got us into trouble last summer when I was inpatient for two months in Kidney failure. Please Lord, not again. If you could pray for things to improve, I would really appreciate it.

Physically its been pretty rough the past few weeks. Mentally, its been a roller coaster, as I get so frustrated with the constant up and downs. But….there have been some victories. I have had the ability to reconcile with an old friend, after we were both hurt by each other’s actions several years ago. The situation had weighed so heavily on my heart, that it was one of the greatest gifts of 2022 to be able to start a text dialogue, opening the doors to full reconciliation. Taking the time to work on trying to heal the relationship has been really healing and assuring that even despite all the up and down, I can still make forward progress. Being staunchly independent so as to not have to rely on others is a huge trauma response. Being able to go outside of myself and move forward, was a huge gift.

As I look back on the year, I’ve come to the realization that post transplant life is like constantly keeping your head on a swivel waiting for the next thing. Its managing meds and appts to also reporting symptoms and changes. Its also, being able to say right now my mental health needs more attention, the physical can wait this week. Or the next day it might be, I need to devote attention to this physical issue. Its physically, mentally and at times spiritually exhausting. I’ve spent so much time in the last two years, telling myself, when things calm down, I’ll make the time for …. But the reality is those moments come amongst the chaos.

The Christmas season, is usually filled with the chaos and anxiety of the gift buying or the activities to be attended, that we forget that amongst the chaos, we find a little infant laying in the manger. What gift are you going to lay at the manger? Are you bringing resentment, anger, hatred to the manger? Or is there someone to forgive? Is there a need in your community, that you can help meet? Is there a relationship that could use more of your time to foster it?

Hope wins, when the infant child lays his head in the manger on that Christmas night. Could you imagine the difference in Bethlehem if we all ran in there with all our chaos, gifts flying everywhere, the baby Jesus starting to cry from all the noise versus if we walked humbly towards our lord, like the magi, to present our most precious gift, ourselves? Don’t miss the baby Jesus, running after a different ‘god’ in your life. In this second week of advent, I will meet you at the manger.

The week before thanksgiving since my transplant has been hard for me. A lot of emotions coming to the surface. I think most of it comes from the fact that Thanksgiving was the first major holiday we celebrated after my Tx in 2020. I vividly remember that our big outing that week was to take our boxes to the recycling center and on the way there, tears just flowed down my face. All the emotions I had been bottling up for the last 6 weeks that year, came to the surface and it was the first time I cried for my donor. I cried for what their family was missing, what they were missing and what gift they had given. I remember there was a soccer game playing on the field adjacent to the the recycling center and watching them thinking, would my new heart allow me to get out there and play again. Did my donor play? All these questions about the person behind the heart I received, that I still know nothing about.

And each year since then, its almost like thanksgiving 2020 has been the benchmark to compare things to. That first year I walked a 5k thanksgiving day – this year, I’m trying to rebuild my stamina by walking the girls around the neighborhood most days. In 2020, I was still in physical pain from surgery. Now that pain has subsided, only to be left with a different type of Chronic pain each day. I was getting weekly labs to watch my tacro levels and my kidneys, and today its the same. That year, I was riding the high of transplant, in such a state of gratitude that the effects of another traumatic event in my life hadn’t kicked in yet. Now its managing anxiety, depression & PTSD diagnosis – never knowing when or what will trigger me. Back then, it was such restful nights, still in the post-operative period, where pure exhaustion knocked me out. Now its endless nights of insomnia (thanks Tx Meds) and not falling asleep some nights or going to sleep at 4/5am. Instead of losing the weight I wanted to- I gained weight but because of life sustaining medications that we fought really hard to find the right ones because I learned to advocate for myself until someone listened.

As I was thinking about all of that this week, I was stuck in this place of comparison and I wasn’t happy about it. It robbed me of joy. I found myself comparing what other people were doing as we continue to isolate for my safety. I was also comparing the progress, I don’t feel I’ve made, which if you have ever experienced makes you feel like a failure. I also got trapped in this feeling of being a burden. Mom had to go into work this week for some big meetings (#masked), and we still had to figure out how to get my labs done, because I haven’t gotten comfortable driving much since my transplant due to never knowing when a symptom/side effect will hit. I thought I had gotten over that feeling. Its mostly caused by the medical trauma of the past 7 years, where Doctors would become so frustrated with my case and not making progress, I felt like a burden, when things never worked.

Overall, we have a lot to be thankful for. I am still here, thanks to a gift by a total stranger and my ultimate hero. I am capable of so many things, I couldn’t do before my transplant. We have learned to lean on each other and the people that have remained at our side through it all. We have two goofball dogs that make us laugh on good days and bad. We have a faith that Hope does win in the end. We have a warm home, food on our tables, clothes on our back. Could we get stuck in this place of comparing our lives to others around us? Sure. Would we love a life that isn’t full of so many ups and downs? Absolutely. But God has given us everything we have needed and continues to need to sustain us.

Don’t let comparison, rob your joy. If you’d like an update on how things have been going, read on…

😷 We had a little rona/flu scare. My PCP wanted me tested after I caught the crud again for the last 10 days. Thankfully, all was negative, but I have to say, sometimes being immune compromised just really stinks. I likely picked it up sitting in the hospital lab waiting room last week. Thankfully, it appears I am on the tail-end of it and hopefully feeling good for turkey day.

As you may remember, I wore a heart monitor for 10 days, after starting to experience palpitations, that were abnormal. As a cardiac patient, I know palpitations but these were different…

♥️ My heart monitor data came back and I unfortunately had some arrhythmias that are not benign. While some of the palpitations were just premature or extra beats in the upper chambers of the heart, some of the palpitations were runs of SVT or supraventricular tachycardia. At rest, my heart rate was 203. 😬

❤️‍🩹Arrhythmias are not uncommon after Transplant.. Treatments range from beta blockers, ablations to a pacemaker. Right now, the Tx team has decided to watch and monitor and if they become more frequent, we will move on to some medication changes. In the mean time the doc has asked me to wear my Apple Watch and capture an EKG, anytime I have them.

🩸 One day I hope to be off the weekly lab routine, but sadly not yet. We are having a really hard time finding the right balance of keeping excess fluid off with diuretics and keeping my kidneys happy. If it wasn’t my heart, the past two years, it has been my two little booger kidneys. We think we have found the right balance after another change last week, but this week’s labs haven’t resulted yet.

We are pretty much both a Bada** at handling what life throws at us, but honestly I think we almost hit our limit last week. Finley started getting sick randomly. I didn’t feel well so Mom had to take her to the the vet, she had to get two shots, start meds and eat a special diet. Oh and we got notified we have a water leak somewhere by the water company. Poor Mom was trying to work, deal with all that, keep me fed and watered as we like to say and both making sure I stayed on schedule with my meds.

I’m pretty sure if one more thing happened, we’d both have been sitting on the floor in tears. We say all the time, we wouldn’t wish Post Transplant life on anyone. But what we wouldn’t wish is the unexpected ups/downs, the chaos, never knowing how I will wake up feeling or what plans will have to be cancelled. But we would wish this life filled with a belief that Hope Wins, that little things don’t matter and with enough love and laughter in your homes that it fills you on the good days and sustains you on the bad. I was reminded this week of a quote, “you may not have Faith in God’s plan, but never lose faith in the One who holds the plan”.

Have a great thanksgiving. Get those christmas pj’s on and decorate it up. Laugh and break bread with your friends and family. We will be rocking our pjs, I will win and those decorations will be up and we will laugh and count our blessings, including each of you.

With love and so many prayers,

K.

Two years ago, our world stood still and my new heart started beating on its own in the quiet of the early morning. It would be a new beginning.

Two years that wouldn’t have been.
Two years of triumph and setbacks.
Two years of laughter and tears.
Two years of good days and bad.
Two years alive.

If you’ve followed along, you’ve witnessed our moments of triumph and our moments of defeat. But even those moments of defeat taught us yet again, the power of hope.

The physical challenges were numerous; the mental challenges were heavy and the spiritual lessons were hard but life-giving.

I learned that bad days are just as much of a gift as good days, when those days weren’t even promised before my gift was received. I learned that post transplant life is as much a life of sacrifice, as it is life giving. And I learned anger robs you of your hope, each day that you hold onto it.

To my donor-

Our heart has carried me through the most life giving days and through some of the hardest days of my life these past two years. In the quiet of our heart, it held grief for what life “should” have been and yet it also holds inexplicable joy and hope for what is to come. It held joy and sorrow, it held hope and despair. It held, disappointment and triumph. It held hurt and healing. It held hope.

I’d be lying if I said I was a happy camper 100% of the time. This year brought another round of c.diff, kidney failure, an auto-immune disorder and weight gain from more steroids and a body I no longer recognize. But I have a pretty awesome team, watching over our heart so we’ve been triumphant over ever challenge that came our way. And we’ve had zero rejection, baby!

Yesterday, your family was heavy on my mind. I wondered how they were doing as they grieved the second anniversary of your passing. I bet we had the same questions? What would you be doing? Where would your life have taken you these past two years? And I prayed that their grief would be less heavy, knowing a part of you lives on in this world.

I promise you this:

I promise to fight every challenge and setback.

I promise to celebrate every victory, big or small.

I promise to laugh a little more each day.

I promise to seek God.

I promise to take care of our heart everyday.

I promise to choose hope each day.

And I promise to remember you everyday of my life because Hope began with you.

And to my mother,

We did it. We made it another year. Oh, it seemed like we’d never get to this point, during all those late night ER visits.

No one gets the privilege to see how much you’ve loved beyond measure these past two years: from being my medication reminder, to errand runner, holder of things ;), meal maker and for helping me in so many ways, when fatigue takes over, you help heal my physical body. Always, willing to keep me company on the sleepless nights or the 1am meltdowns. But it’s what you do – wiping my tears, laughing until we cry, crying until we laugh, praying for me, encouraging and bearing hope, when all seems lost- that have helped heal my soul – spiritually and mentally.

I think back on all those late night and early mornings and I can always see you sitting in the chair at the side of my bed. Ready to pull out the Mama Bear card at any time, but instead there to be a comfort and companion to me.

I don’t know why God has asked us to walk this road. And I know we’ve both asked to peek at whatever roadmap he’s using, but one thing I know for sure, there is no one else I’d rather have as my companion for this journey. You hold me up when I am weak and point me to our Lord for continued hope and strength.

And to all of you, who have walked with us, thank you for your prayers, support and companionship on one of the most challenging paths we have ever traveled. Your witnesses have bore us hope, each day. And for that we are eternally grateful.

When we were waiting on my heart, we waited with prayerful expectation and hope and so today, we look forward with that same prayerful hope for what is to come. Because Hope wins, thanks to Jesus and a donor.

K

With love, K

Hey y’all,

Its been quite the past month, let alone since May 4th. …the day I learned I had c.diff again. In case you missed last week, I tested negative for C.Diff while inpatient for five days. But my immune suppressant, Myfortic, prevented my body from allowing my gut to heal, so the abdominal pain is still there so its been a really difficult week being back home, with even an ER visit thrown in there, for symptom control. To give you an idea of the level of pain, it took 5 doses of IV pain meds to get the pain to subside, before we could go home. But we continue to choose hope that this will heal and pray the doctors were right.

So, on facebook, I mentioned an option to order a new tshirt or tote bag hand created by me as a fundraiser for my ongoing medical costs. It got a little confusing and some people missed the original design in 2020, so I now have a couple options. Stay with me..

Option 1: Royal Blue T-shirt or Tote, with Hope wins personally made by me. Can be paid for via paypal/venmo or check. Order by September 1. The design is similar to the original version created exclusively for us Grasson Girls (pictured below). They are $15 each.

Please drop below the t-shirt info, if not interested to see the other piece of this post. Options #1 is:

• Royal Blue Tshirt with White/Gold Lettering
• Royal Blue Tshirt with Black/Gold Lettering
• Royal Blue Tote with White/Gold Lettering
• Royal Blue Tote with Black/Gold Lettering

Order Form available here and then I will be in contact about payment.

Option 1: Royal Blue T-shirt or Tote, with Hope wins personally made by me.

Option 2: A new updated design for 2022, available through custom Ink.

Custom Ink Royal Blue Items for purchase and you pay directly through Paypal. It runs for two weeks and then it will be shipped to you directly. If you purchased the original version in 2020, these are a different brand and a softer material, but sizing should be the same. The prices are a little higher than 2020 (thanks ‘rona & supply chain issues), but I tried to pick the best quality items at a good price point.

Please note there is no hashtag on the back of this design. I felt like the image spoke to my donor whose gift keeps on giving hope through my new heart. Options are as follows:

• Royal Blue unisex short sleeve T-shirt
• Royal Blue unisex long sleeve t-shirt
• Royal Blue unisex crew neck sweatshirt
• Royal Blue unisex hoodie sweatshirt.

Order form available via this link

PART 2: The Maryland and DC Heart Walk

If you are facebook friends with mom, you know that she has been fundraising for the DC Heart Walk. I am so proud of her being a Team Coach this year for the November 5th event. I know so many of you have already donated to our team, so thank you so much. Our plan is to attend the event, assuming all my organs cooperate and none of them are cranky that week and I feel good. Join our team! Get the chance to see us in the wild after almost 2.5 years stuck at home. 🙂

Visit this page for the DC walk.

I am also planning on walking with my Cardiologist, on his team on October 8th at the Maryland Heart Walk, if anyone would like to join us, come on down to Baltimore. I feel strongly about supporting the Hopkins team this year as they continue to be amazing advocates and physicians for me.

So I have an ask, that you would kindly contribute $5 to the walk. Thats skipping your starbucks drink one day. Imagine what you will be helping do…furthering stroke and heart disease research and grants. These directly impact my care, so I would be so appreciative.

Visit this page for the Maryland Heart Walk.

Either way, please know that you help us continue to build/have hope through the ways you each touch our lives, so these shirts or walk are a way to start off the celebration of the 6 weeks leading to my second Heart Anniversary on 9/22. The first 6 months post transplant are the scariest and most critical, the first year is truly a celebration of everything you’ve been through. 18 months is realizing that this life is your new normal. Year 2 sentiments appear to be “da*n, Ive been through some sh*t, but hope continues to win. Couldn’t possible do it without all your prayers love and support.

Love, K

#BecauseofJesusandaDonor #hopewins

Hey y’all –

It’s another night of transplant insomnia so I thought I’d give you an update on how things are going. Insomnia? Yes, it’s fairly common in post transplant patients, so some nights I get zero sleep, 2 hours of sleep or a good 8 hours of sleep. And I can’t just sleep in because anti-rejection meds are timed, so it’s just another thing I didn’t read in the fine print. Anyways…

Last time I updated on Facebook, I was sharing how my team decided to proceed with a fecal transplant to treat my antiobiotic-resistant second round of c.diff. Unfortunately, we had to cancel it because I ended up in the local ER and hospital for a day. I didn’t have the time to do the prep or the mental bandwidth to do it. I was also dealing with a recurrence of chest pain that the cardiologists believe is the ongoing infection, irritating the heart and I didn’t feel comfortable going under anesthesia with it, so I said no.

When I was discharged from the local hospital, I talked to my Tx coordinator and our plan was they would reach out to GI after the July 4th holiday to see how we could move forward and get things rescheduled or I’d go to Hopkins ER if things got worse or they’d admit me on Tuesday when I was up at Hopkins for my Botox injections for my migraines.

Well….I reached out to GI this past week but never got a call back and I never heard from my Tx team either. When I called them Friday, I was informed they never reached out to GI 😡 and for this past week no progress was made. Meanwhile symptoms have continued-mainly lower back and abdominal pain and my PCP has been trying to manage symptoms with a variety of meds including pain meds. Tx wasn’t happy to hear I was taking pain meds but my PCP and I decided they can just deal with it until we treat this infection properly. Because the infection is resistant to the antibiotics, it is still active, inflaming the colon and causing the pain.

…On top of dealing with that issue, the steroids we restarted and the pain meds are causing me to retain fluid and slowing things down. So now we have to try to treat that without totally making my kidneys angry. Super fun stuff to get to manage.

Truthfully, I have had a few good days but more bad ones than good the past couple weeks. The hospitalization last week, triggered my PTSD so I dealt with a lot of flashbacks and nightmares. We are possibly going to start another med that is known to help with PTSD, but waiting to hear from the Tx Pharmacist if it got cleared. I am clinically diagnosed with PTSD, so it adds another layer on top of the physical pain to hospital stays.

When I was doing my bi-weekly telemedicine appt with my PCP this week, I told her it felt like we were back to pre-transplant times-chronic issues, fighting to get the right treatment and dealing with pain. We both agreed it was a “what the h*ll” kind of time right now.

Truth be told, about a month ago, we saw my depression rearing it’s ugly head again. I saw some of my symptoms returning like not wanting to get dressed each day, not doing my self care regimens like moisturizer and such, reaching for sweets and finding an excuse to not walk the dogs. When those things start happening, it signals to me that I’m in a depressive episode.

No one likes to talk about mental health because of the stigma. But since we’ve even talked about my poop on here, I feel like it’s not off limits…The good days have been outnumbered by the bad days, both physically and mentally, as of late. There is this unspoken pressure to “honor your donor and protect your gift” and rightly so. But it also sometimes puts limits on dealing with other emotions…tired from no sleep…angry about pooping like 10 times a day, frustrated when your team drops the ball and even grieving the life you now live. My new therapist is helping me to explore these other emotions and how to frame them from a place of gratitude, while also validating they are real emotions that are okay to be felt.

Am I okay? 100%. Am I burnt out on all things Medical? Also 100%. Am I doing all the things to help my mental health? About 90%. And that’s okay. Sometimes your girl needs a fuzzy blanket, two dogs, her mama and some chocolate. Oh and a few good tears.

I’ve learned over the last 72 hours that a recurrent c.Diff infection in a transplant patient is a bigger deal than having it the first time. Things are on the up and up, but not quite where we need them. So, at the local hospital for at least another day. ☹️

The doctors are pleased that my WBC started coming down from 17 to 14.3 over the last 72 hours (normal is 10), but my kidneys took a major hit. And my kidney function is too far from my baseline to be discharged. They also want to see my blood count get closer to normal range. It will be a day by day decision based upon labs. Do you remember what caused me to be hospitalized last summer for two months? C.Diff and my darn kidney function. Like #no we aren’t doing that again.

The hospitalists have been working by phone, with my fav Hopkins Transplant Doc. They told me that he really advocated for me: letting them know what he wanted done and what meds he knows work in my case. Thank you Lord, for Doctors working together. 😎

Now back to C.Diff, Transplant Infectious Disease at Hopkins is now also following my case. This is because I’ve gotten C.Diff twice in a year. Tx ID is heavily involved in the immediate post Tx time and then when issues like this arise.

Here’s where things get a little more interesting, complex, complicated, or whatever you want to call it…

In all the crap ton of lab work prior to transplant, they get baseline blood levels of all kinds of fancy things. They reran some of the labs (science-y stuff I don’t understand) and one of the levels is running higher. Transplant and transplant ID docs don’t like this because an increase in that level can cause you to go into the non-treatable rejection. Transplant ID has studied and seen a lot of instances where C.Diff has raised this level. So treatment for C.diff is very important and completely irradiating it from my system needs to happen. It’s not just a take this antibiotic for months and it will be better this time.

After talking to my Tx Coordinator Wednesday, a lot of discussion has been going on with Tx, Tx ID, GI , and Tx Pharmacy behind the scenes at Hopkins about how to treat this case, while symptoms continue to be managed locally. My transplant ID doc is one of the smartest physicians I know, so they’ve been collaborating and are working up there to get me in with specialists quickly and get things approved by insurance because…y’all I can’t even believe this is what we are considering…

….They can’t use certain meds because of my allergies, certain ones because of transplant…so they are discussing a fecal transplant 😬 or a monoclonal antibody treatment. Whichever treatment is available….but really sh*t💩? I can only laugh…or I’ll cry and I did that to poor mom at 2am in the ER the first night.

When my coordinator brought up the treatment options I laughed out loud, and had some serious questions…

Like do I get a poop transplant T-shirt to match my heart one? Do I have to change my # to because of Jesus and a Donor and TP? Am I awake when they transplant the poop? Like how does one become a poop transplant donor? Does that persons poop stink like mine?

How exactly is it done? In case you are wondering, You clear yourself out with colonoscopy prep, and during a colonoscopy it is transplanted while you are under anesthesia. There are strict guidelines to be a poop donor. Apparently there is a nationwide storage of poop for fecal transplants because there are very specific criteria, including no recent infections and darn ‘Rona has limited people’s abilities to donate.

In Tx IDs opinion, Monoclonal antibodies are not usually as effective in transplant patients, so they are leaning more towards the transplant. And please, none of you offer to be a targeted donor. I love you all but I don’t want your poops.

Looking back…we think I picked up c.diff when I was hospitalized in April (as it is often times hospital acquired) and we blamed original symptoms on restarting steroids. I am so grateful that my PCP is so familiar with my case that she literally said “when I think your going to zig, your body zags, so let’s just run this panel”. Had she not run it I would have gotten much sicker. Bottom line: we got lucky we stayed so diligent about my labs and pursuing why they were so off. When we were texting yesterday, we both decided C.Diff was better than rejection any day, as with my symptoms the past month, she was thinking possible rejection. So we count our blessings.

I’m starting to feel much better than the past month, being hospitalized and getting fluids , antibiotics and meds to manage symptoms. But we’ve got a ways to go. Buckle up folks, the fun is just beginning.

#HOPEstillWINS #BecauseofJesusandadonor(&tp?)

Hey y’all!

It’s been a long time since my last update. Life has been very busy, which is saying a lot since I’m still on lockdown thanks to a worldwide pandemic. #goodbyecovid. We don’t go anywhere besides the doctors so why is life so busy? Well let’s back up a little bit.

In addition to my chronic and daily migraines, About a month ago I started having some tummy troubles. Things were moving moving from each direction. I was trying everything I had to make it to a Botox appointment for my migraines, so at first I thought, okay…a stomach virus. I’m immune compromised..not surprising.

My team thought perhaps a stomach virus or c.diff returned. As I begged God, please God, no c.diff again, we ruled it out. However, because the stomach symptoms are COVID symptoms I had to get a Covid swab, per my transplant coordinator. You know how hard it is to find a Covid swab on a Saturday at 4pm. Driving around for 1.5 hours and 3 urgent cares later, I finally got swabbed! Thankfully it was negative.

So now what? Let’s just say I was calling into my transplant team every 1-2 days to report my bathroom habits and they kept saying “let’s watch it..let’s watch it”. Well, I had a terrible weekend a few weeks back and ended up in the hospital, getting fluids to rehydrate me while also trying not to put me into fluid overload (aka heart failure). Remember a few months back, my heart is still acclimating to my body and a little stiff and therefore very fluid sensitive. My body can’t overcome dehydration by itself anymore and cardiologists get a little itchy scratchy about dehydration because it can lead to abnormal rhythms, so hence I got stuck in the hospital. After waiting for 3 days to transfer to Hopkins, I cancelled the transfer. I’d rather be miserable with my bed and toilet thank you very much.

This has all continued on for weeks. I’ve either had to get labs or return to the ER for more fluids. This last time because my heart was beating irregularly and very fast. So finally, this week, we sent stool samples out. It’s 4 weeks later. To say, I’m madder than a hornet would be correct. My body feels tired and warn out and we still don’t know what’s going on.

The other night we drove up to Hopkins at midnight to get seen as I was not feeling well and the stomach issues were getting worse, only to wait 8 hours and never been seen. They were overwhelmed with Covid so I weighed the risk of waiting in a waiting room any longer, immune compromised, against my symptoms and went home.

While all this is going on, I’m also dealing with uncontrolled hypertension. As we like to say, transplant gets very territorial of their patients and doesn’t like anyone else messing with their patients meds. Well as I sit over here with really high BP, they aren’t getting anywhere. I’m about 30 seconds from emailing my other docs to get them to suggest something and getting transplant to think it was their idea. I’m pretty convincing on phone calls when I say “what do you think of starting…?”.

The other big thing right now is my blood sugars. We are trying to taper off my steroids by January 1. We previously tried and it failed so we have to do it gradually because I’ve been on them so long. They effect my sugar, so thanks to a new Endocrologist we’ve been trying to find the right insulin scale. I wear a continuous glucose monitor, which sends her my data in real time. Once a week she looks at it and we adjust the scale. This is in anticipation of switching me to an insulin pump in the near future. This is exciting because it will get my sugars in tighter range, which will help my triglycerides come down and in turn help my new heart.

I spend a lot of time on the phone with insurance, pharmacies, doctors offices, transplant team, labs, while also taking an online class this semester. All this has to fit in amongst late night ER visits, hospital stays, rest to recover from both and late nights not feeling well.

My team has always told me to “give it a year and you’ll feel your new normal”. They admitted last week it looks like it’s going to more like 18 months. I still have to do labs every 1-2 weeks, because things haven’t quite settled yet, but hopefully we will get there.

Do I feel better than before transplant? Absolutely yes.

Do we still have some kinks to work out? 100% yes!

Are we still on isolation? Yes, now even more so, because it’s flu season on top of Covid.

Our lives are completely different than pre-transplant. We both don’t get as much sleep, our heads are constantly asking the what if? question and we do a lot of coordinating of schedules.

They tell you the first year is the hardest and you’ll have hospital visits. They don’t tell you, you’ll deal with almost daily migraines and wake your mom up taking a hot shower or getting sick because those are the only things that help. They don’t tell you, you’ll need your mom to drive you to appointments because you won’t drive for so long, you lose all road confidence. They don’t tell you some days you’ll love your team and other days they literally make you scream! You’ll cry tears wishing for life pre transplant when the side effects are just too much, all while knowing in your head, without it, you wouldn’t be alive. You’ll lose friendships, because they just stop contacting you, because you aren’t able to come around. They never tell you, that your heart will break a million times over when it comes to a vaccine, because people you once trusted won’t get one, while for you it is a matter of life or death, and the more people vaccinated means I’m just a little bit safer. Do they not care? They won’t tell you that you will juggle more doctors than you can count and keeping everyone straight is a full time job. They won’t tell you about your donor so you find yourself wondering who they were or what they were like. No, they won’t tell you about your donor, but you’ll find yourself coming back to them on the light nights or the early mornings, with gratitude to have a heart still beating. They won’t tell you, you will find yourself holding your hand over your chest just to find a moments peace, feeling it’s still beating. Nope, they won’t tell you.

They’ll tell you that you will live, #becauseofjesusandadonor and because #hopewins.

Love, KG

P.S. Just a friendly reminder: your mask goes over your nose and mouth, 6 feet is 6 feet, not 1, 6. Wash your hands! And for all things holy, do not pull your mask off your face to sneeze or cough, that’s the point of the mask; to catch your germs!