Hello everyone,

Another week has passed us by. We officially hit 4 months post op, which is a big deal in this house, because it means I could walk the dogs again. I was happy to have my walking buddies again, Finley and Gracie were happy to go, although they seem to have forgotten their walking manners, and Mom was happy because we tired them out and they weren’t so naughty. Not lifting, pushing or pulling more than 30 pounds for 4 months is trickier than you think. Keep on healing ol’ sternum.

If you didn’t see my facebook post earlier this week, the title of this post will make no sense. Dr. Pepper took Caffeine Free Diet Dr. Pepper out of production and I nearly had a meltdown over it. I don’t drink, I don’t smoke, but I love a fountain drink or a diet dr. pepper. Its like my little treat. Only problem is that since transplant and with all my meds, especially steroids, my body can’t handle caffeine, so enter caffeine free Diet Dr Pepper. Well, I went to order it, after a frustrating appointment and a morning dealing with insurance companies and it could no longer be found. I nearly broke down at the kitchen table. I think my direct quote was “you’ve got to be kidding me..this is so not my day”.

It was never about the diet dr pepper. It was about disappointment. I can laugh about it now, but it was like the straw that broke the camels back.

I shared last week about my Blood Pressure being high. Well that darn blood pressure is being so stubborn, that we had to add a second medication to manage it and have already had to double the dose. I am disappointed that we had to add another medication to manage it. My body does not like medication changes, so for a few days after we make one, I feel pretty crummy.

I saw my PCP in person this week for the first time in 10 months. I see her via telemedicine every two weeks, but she wanted to evaluate me in person and since I have the covid antibodies, we decided now would be the time to do it, minimizing risk. Why in person? Well, I have been complaining to the transplant team that I was having a lot of neck, back and left shoulder pain. They kept saying “we will watch it”, but I could tell something was off. I didn’t have this pain after the first open heart surgery and it was getting worse and my shoulder felt almost locked. Well, after a very disappointing (catching a theme for today?) appt with my general cardiologist about two weeks ago, I emailed him to followup on medications and the blood pressure and I explained to him that I thought the hypertension was multifaceted, including because I was in a lot of pain. When he was speaking to my PCP last week via phone about my blood pressure he asked her about it and expressed concern that the pain and so they agreed my PCP would evaluate.

Turns out….I have what is known as frozen shoulder and I am in the freezing stage. Frozen shoulder is just that, your shoulder becomes locked or frozen and during the freezing stage you are in the pain stage as you slowly lose range of motion. Then it goes into the frozen stage where you are stuck at that loss of range of motion and then eventually it will thaw/heal. Guess how long it can freeze for…up to or more than a year. When she told me, I started laughing. It was either that or tears.

What can we do about it? Not much, we can’t use the typical medication treatments like NSAIDs due to my transplant/other meds, physical therapy is out because of covid/post transplant and injecting steroids would only provide a temporary relief but throw my body all out of whack, so the risk outweighs the benefit. So what are we doing? Heating pads, lidocaine patches and a topical steroid and stretching as tolerated. My PCP did warn me that the pain is likely to get worse and some people do require pain medication if it becomes unbearable or if it continues to wake me up.

So how’d I get frozen shoulder? Women and diabetics are more prone and my elevated blood sugars from steroids likely didn’t help. It can also be due to immobility, so during the post-op period when I was protecting the upper body from pain, I wasn’t using the arm as much, the perfect storm happened and now I have a frozen shoulder. We did do an x-ray just to be sure, as steroids can affect the joints, but it would be pretty early on for that to happen, so we don’t expect the x-ray will find anything.

To say I’m disappointed to have another pain issue thats only complicated by the fact that we can’t properly treat it due to the surgery we did to get rid of another chronic pain, would be pretty accurate. The fact that it was dismissed at Hopkins because they thought it was ‘memory pain or in my head’ (thanks, ID) and not evaluated, is disappointing.

My PCP said something very insightful yesterday, ‘don’t punish yourself for the past’. I downplayed the pain and stopped reporting it, because I just didn’t have the fight in me to go toe to toe with providers again. I knew exactly where the conversation would go, because its already gone there multiple times since transplant…”you are too young, are you sure you aren’t just remembering your past pain, we don’t know the source of your pain so we don’t think you have it, are you sure we don’t just need to bring in psych?”. You guys, I had a transplant due to chronic chest pain and I still get questioned about if my pain is real, have to argue that I am not a drug-seeker and its still a fight. Major disappointment.

There were a lot of other disappointments this week. My labs resulted and they were off again. My WBC is 2.1, which is super low, which means I have to give myself an injection to stimulate bone marrow and make white blood cells. It causes excruciating bone pain and the last time I had to do it I got sick because the pain was so severe. We also have to had to hold a few anti-rejection meds until it rebounds, which no one loves, including myself. My kidneys also are also getting cranky again so I have to get labs redrawn on Monday. At this point, normally we would be to labs every 3/4 weeks but unfortunately these lab results mean we are back to weekly labs for a while.

I thought you just had perfect labs? I did. This is the reality of being immune compromised and all the transplant meds. We also are increasing and maxing out doses of meds that can affect the kidneys, so we expected some change, just not this much. This week we are also adding another anti-viral medication as a preventative, per Transplant IDs suggestion. We’ve made 4 med changes this week alone and likely more next week. From a cardiac perspective, things continue to improve, we just have a lot of work to do to get the rest of my body to fall in line.

We head back to the Cath lab the second week of February for the next Cath/Biopsy/echo and hopefully it will continue to show good results. We also are a few days short of the two week countdown to February 5th. Its a big day in this house this year: my trusty sidekick’s birthday and National Wear Red Day to raise awareness for heart disease. So if you don’t have any red, heres an excuse to do some online shopping or rock your “Hope Wins” items on that day.

I know that this post isn’t the most uplifting post, but I have always promised to be truthful on this blog and it was a disappointing week in many ways. Do I lose my you know what over it sometimes? Yep. Do I get cranky about it sometimes? Just ask Mom. Did I emotionally eat some ice cream over the weekend. Sure did. Do I laugh about it? Yes, eventually….so long diet dr pepper. Do I believe things will get better? 100%…because Hope wins.

Am I thankful for the opportunity to have good days and bad because of the gift of a donor and their family? 100% of the time. They are the true heroes of this story.

See you for the next update. Love, K

Well folks, we hit the 100 days Post Op mark a few weeks ago and I can both hardly believe its been that long and at the same time it feels like yesterday. Over the last few weeks my mind has shifted from ‘the heart’ to ‘my heart’. While my donor will always be a part of me and I thank them/their family every day for this gift, it was important for my own healing to accept the heart as ‘my heart’.

My medical team, including Transplant, warned me/explained that the first 3 months would be hard…surgery recovery & that it would take a while for the body to adjust to all the new medications. Think you go in on 20+ meds and you come out of the hospital with 20+ meds, all different ones. Antivirals, antifungals, aspirin, anticoagulants, BP Meds, GI meds, insulin, steroids, anti rejection meds and so much more. Then all your specialists want to restart all of the meds they prescribed and the list keeps growing. We are currently sitting at 21 meds/daily + 9/as needed and two specialists want to re-start 2 more daily meds. My poor PCP has to be the one to get everyone’s notes, make sense of what everyone is suggesting and identify what has to be started, what can wait, what is more pressing.

Speaking of which, last time I wrote, my Blood Pressure (BP) was being stubborn and it still is. I had a telemedicine appt with my General Cardiologist on Friday and he didn’t like the BPs. Then on Wednesday, I had an appt with my PCP, who didn’t love them either. They both share the belief with my case that we go low and slow with any med changes for me and they are the two physicians I trust the most to make decisions on my case. The transplant team has had me calling in and speaking to one of the NPs everyday to monitor my BP and post covid recovery, but they are still learning my case.

I’ve learned while I am organized and in touch with my providers a lot out of necessity, sometimes its easier if they speak provider to provider. So, after a lot of back and forth between my PCP, my general cardiologist and the transplant team, I asked my Cardiologist to call my PCP to discuss the options. I was literally reporting the same information/vitals to 3 different providers, but no one wanted to be the one to make the decision on how to treat the hypertension. . Within 24 hours, my PCP and cardiologist had spoken and come up with a game plan, we are just waiting for Transplant to approve the medication.

I also had an appointment with endo this week to followup to Diabetes management and the good ol’ steroids still wrecking havoc on my blood sugars. We are still trying to get the afternoon sugar spike from the steroids under control, but we are making progress. He wants to move quickly to get the sugars under better control as high sugars can weaken my already compromised immune system. However, my PCP was not a huge fan of his plan and so she modified it after we spoke yesterday and basically said “slow way down, he’s going to bottom you out”. She also doesn’t want to start another medication, Jardiance, right now while I am on an antibiotic as it could make me more prone to an infection. While yes, it should be restarted, not right now.

Tomorrow, I have a telemedicine appt with my Pulmonologist at the request of my PCP to get his input on an asthma med that was stopped post transplant as well as follow-up to Covid as I had pneumonia.

I also had some labs redrawn this am as my tacrolimus level (anti-rejection med) came back low last week during my Right Heart Cath/Biopsy. We had to increase the dose, which means we also had to redraw labs this week. Thankfully, my favorite local phlebotomist was working today and was able to get them, even if it took two sticks.

Speaking of last weeks Cath/Biopsy, it showed zero rejection!!! This was huge. The team expressed inpatient that they really had no data about how Covid would impact the heart, but that any infection increased my risk of rejection. To say we were anxious for the results would be an understatement. Pathology took all day to read the samples so we didn’t get the call until late Friday and when we did, we were both filled with tears. A big victory. They were also happy to see that my labs looked the best they have post transplant. My kidney function went from its very worst during my Covid admission to the best we’ve seen it post transplant with my lipid panel was ‘perfect’ and all my other labs besides the tacro were right in range.

We also had a few smaller victories this week: My Cath showed my heart is functioning well enough without diuretics, that we got to stop lasix! Yay!! I also completed my last dose of 3 months of an anti-viral!! This med made me nauseous every night so I am so happy its done!

So if you lost track I had a therapy appointment, a right heart cath/biopsy, echo, General cardiology, Endocrinology, PCP, pulmonology, labs, and daily phone calls with the transplant NPs all within the last 10 days. Life right now is lots of telemedicine appointments, phone calls to offices, insurance companies and pharmacies. 100 days later after transplant and I’m learning so much of this life is management: symptoms, doctors, prescriptions, etc. We’ve gotten into our rhythm over here and every day we thank God for this gift, but it is not easy.

We keep getting the same questions so I thought I’d answer the top 10:

1. Do you know anything about your donor? No, Hopkins generally does not give out this information and I am not ready yet to reach out to the family, which is how I would learn more about my donor.
2. How would you contact the family? A professional organization works with your transplant center as a conduit for any communications/letters.
3. Can you get Covid again? Technically yes, they aren’t sure how long the antibodies or to what extent they provide immunity in transplant patients. We just continue to isolate and report any new symptoms.
4. Would you still test positive? Yes, likely. They believe for about the next 90 days, I would continue to test positive.
5. Will you get the vaccine? Yes, if the transplant team decides they would like their patients to receive the vaccine, then give it to me. I will roll up my sleeve now. But, I strongly believe our healthcare workers and older population should get the vaccine first.
6. Can we see you now that you’ve had covid? Sadly, no. We would have been asked to isolate for the first 12 months post transplant, covid or not. But we’d love to see you on zoom 🙂
7. What will life look like for you when you are off of isolation? Well, we will ask any potential visitors if they have been sick or around anyone sick, wash their hands when they arrive and take their temperature before coming. A fever is a no go.
8. Can we cook you a meal? While we are grateful for the offer, no, its simply just really complicated. I have several food allergies and many foods/spices have to be avoided due to medication interactions. We also have specific instructions on how food can be prepared, stored, thawed, cooked due to the high risk of food borne illnesses, etc. Mom is only one person, so it would be wasteful for her to receive a meal, but if you know its her favorite dish you make, Im sure she’d accept a plate on the porch. 🙂
9. What precautions do you have to take? So many, but the big ones are: wash your hands frequently, change toothbrushes and sheets anytime I’m sick, wipe down high touch areas often with disinfectant, isolate from others, no going inside anywhere except a doctors office and shower upon returning home, wipe down any contents of packages that are delivered and wash hands immediately after, cardboard remains outside for 2-3 days, any outside food gets transferred to a new dish- wash hands and reheat and of course wear a darn mask.
10. Hows your mama? Besides being a Bad***, she is doing well. She’s working from home and I think its done both of us good that she has been able to remain close by during these first several months post transplant. Her post-covid cough has gotten much better and her fatigue too. We’ve learned to take it slow on the days we need to and do things we enjoy on the good days. She has made huge sacrifices for my safety and for that I am forever grateful, so thank you to everyone who continues to remain in touch with her and check in on her too.

Well, thats it for now. Congrats on getting to the end.

-KG

My oh my, 2020 certainly ended with a bang for us girls. Last time I wrote, it was day one of being admitted to Hopkins for Covid. How’d I get it? Who knows. But likely, I came in contact with a surface or person infected with the virus when I went to get labs or to an appointment at Hopkins. Medically necessary appointments, but likely how I picked up Covid none the less.

You may have noticed, I’ve been a little quieter on facebook since I arrived home. I removed all social media from my phone for a couple of reasons. But the biggest reason has to be that when I see people posting not following Covid protocols or refusing to wear a mask, it breaks my heart in more ones than one. To be honest, I can not reconcile those who claim to be ‘pro-life’ yet cannot protect other human lives by wearing a face mask or staying home. Its truly the simplest act of christian charity you can do for me right now, by helping stop the spread of covid. While I will continue to share my story, progress, victories and challenges this year, they will be less frequent on social media. I will post any blog updates on social media and any of the big stuff, but for my own mental well being, I’ve limited social media to only on my laptop for a very limited time each day.

Y’all this virus hit close to home and its the first time in my life, I laid in a hospital bed and I wasn’t sure I would survive. I’ve had 5 heart attacks, 30+ Cardiac Caths, multiple surgeries and the big kahuna of Cardiac Surgeries, a transplant, and Covid was the first time I feared for my life. One night I even considered typing a note to my mom to find on my laptop, should I not make it, because of the severity of the situation and the conversations the team was having.

While many followed along on facebook, the severity of the situation was reserved for mom and I and for 72 hours it was the scariest of our lives. The team was talking intubation, transfer to the CVICU, concern that my inflammatory response was so severe that they weren’t sure if I would respond to treatment….and things took a turn very quickly.

Days 1-6 of being admitted, we were dealing with a lot of nausea, vomiting, pleuritic pain from pneumonia and congestion/coughing. Thankfully, on day 2, I received my first dose of plasma, which seemed to halt the progression of the symptoms. I still had lots of crappy symptoms but they weren’t getting worse.

On day 5, the Infectious Disease team tried to discharge, only I was still vomiting and after a lot of drama, the transplant team got involved and halted all discharge. They then looped in Transplant Infectious Disease to consult and the following day they came by.

Day 6 (Day 9 of Symptoms), Dr. A of Transplant ID, came by who explained she didn’t think that I was past the worst of it and in her experience, transplant patients usually worsen around day 10 of symtoms, when their bodies go into a heightened inflammatory response. She fully expected that I would get worse over the next 48 hours. And she was spot on.

On day 7 of being admitted but day 10 of symptoms, Thursday, my nurse happened to be a PCCU (Cardiac Unit) nurse who had been floated to the floor to cover. She had me many times on the PCCU and she is a gentle giant. An advocate. She is always calm, cool and collected, even in stressful situations, but she also knows how to get her patients what they need. She immediately came on shift and got the resident to order a higher dose of nausea meds, because they had ordered the smallest dose possible, it wasn’t working and she knew what I had needed/tolerated in the past in the PCCU. She came in for evening vitals around 10 and was concerned about my BP/HR being elevated and my oxygen sitting in the mid 90s, the resident instructed her to monitor for now. Only around 2am for the next round of vitals, I couldn’t catch my breath or stop coughing and my oxygen was in the high 80s and my heart rate in the 140s. She paged the resident who immediately came to the bedside, put me on oxygen, got me some water and was able to get my oxygen levels back into the mid 90s. Things were definitely getting worse.

Day 8-10 admitted, 11-13 of symptoms, were the scariest as my lungs continue to worsen. Because I had agreed to enroll in a study, they were doing regular ultrasounds of my lungs and could see that the inflammation was worsening. They had to switch up their plan. This was around the time that the chief of transplant got involved in my case, so we had Infectious Disease, Cardiomypathy/Transplant, Transplant Infectious Disease, Chief of Transplant and Transplant Pharmacy all involved in my case. Afterwards, they explained that there were some differing of opinions on how to treat me by those involved. I learned after discharge that Transplant ID and Cardiomypathy had to do a little bit of ‘getting everyone on the same page’ with ID. Generally, most teams are constantly reaching out to the transplant team with “tell us what you want us to do” and unfortunately this team wasn’t doing that.

Given that I was in so much pain (which was never adequately addressed, but thats a story for a different time) and they needed to control the inflammation/symptoms, I was started on Remdesovir, Dexamethasone-High Dose IV Steroids (this was to protect the heart from rejection as well as covid symptoms), another dose of plasma & doxycycline (antibiotic). Let me just say, those medications make you feel like crap. I literally ate mango Italian Ice and saltines for 3 days. If I see another italian ice anytime, it will be too soon. They wanted to insert a feeding tube if I was unable to eat by the next day. Transplant ID had explained that after about 48 hours of treatment, she expected me to turn a corner and she was right.

Day 11 of admission (14 of symptoms), I began to turn a corner. I still cried myself to sleep, because I was in so much pain and I required IV nausea meds every 6 hours, but I was finally able to eat something and was back off oxygen. On Day 12, from a Covid perspective, I was stable enough that they started talking about discharge. But the Transplant team was looking at my labs with a big fat NO. My kidneys had taken a hit from all the medications, not being able to eat or drink and from the virus. They fully expected them to bounce back, but they were being stubborn, so we pushed bags of fluid. Only slight problem is that you have to do it very slowly with heart patients so you don’t fluid over load them. So we literally ran a bag of fluids for 10 hours. The nurse and I just shook our heads, they weren’t running them slow, they were running them like a glacier could move faster slow. So the IV pole and I were good friends for hours a day and I became that patient that just hit the restart button when it beeped because I moved my arm in a weird way.

Days 12-14 were really about my kidneys and my labs being off. On day 13, December 23, the Transplant Attending said she wanted to see my kidney number come down to at least 1.5 before I went home and if it did, she would discharge me late on Christmas eve. On December 24, the results came in with what number? 1.5. The ID attending when he rounded at 11 had already contacted the Transplant team to say “lets get her home”. And around 2pm, Transplant came by with news I was good to go home. I was annoyed that transplant was saying “we have to see her before she can be discharged”, but learned later that was due to the team the week before trying to discharge too quickly and giving them bad information that I was stable when I wasn’t. Transplant wasn’t being difficult, it was there way of protecting their patient. It took 4 more hours, because we all know no one discharges patients quickly, but at 6pm, I was busting a move out some back entrance (literally) to a designated area for Covid+ patents to be picked up. We were going home and had broken the streak of 4 Christmases in a Hospital.

The week after getting home was spent doing a lot of resting, hydrating, eating what sounded good (I was given a ‘eat/drink what you want this week..we just need you eat/drink’ by the transplant team.) and followup appointments via zoom. I had to taper off the high dose IV steroids to a taper of oral steroids and back to my post transplant steroid dose, so I spent a lot of time dealing with sugars, talking with the team, etc. We have also been chasing elevated blood pressures since I have been home. The team believes it is because we pulled me off my diuretic and my blood pressure med had to be discontinued inpatient due to my kidneys. We restarted it after discharge, but my blood pressures are being stubborn. We changed the frequency, the dosing but my little ticker is just being pesky. We are trying a higher dose all at one time versus a smaller dose 2x/day and if that doesn’t work than we will have to add a second medication. If you are of the praying kind, please pray for my BP to stabilize.

We will also see on Thursday, how the heart is doing as I will be heading into my next Right Heart Cath/Biopsy at Hopkins. This will give the team the best indication of how my heart is doing post covid, from a rejection standpoint, a filling pressures perspective and if lasix is still needed. They also generally do a limited echo at each right heart Cath, but have decided to do another complete echo to check my heart. Pre-Covid the team was very pleased with how my heart had settled in and now everyone is anxious to see how its doing during the post Covid recovery period. I was the ‘freshest’ out of Transplant patient to contract Covid, so really not much is known about the long term effects, but the team assures me that we will address whatever issues arise. Any infection increases your risk of rejection, so we pray that the treatment protocol they followed, helped to prevent that. We will likely get those results on Friday.

Because I am immune compromised, I was told to isolate for 21 days versus the usual 11 days, as I was likely infectious for 21 days. Mom and I lysol’ed everything in sight, stripped the beds and disinfected and washed anything we could, in the hopes we got this virus the heck out of here. Because I would likely still test positive, but not be infectious, I did not have to get a Covid test before this Right Heart Cath on Thursday, nor will I for 90 days post infection. And my nose rejoiced! Hopefully, given that Mom also had Covid and has the antibodies, they did not feel that she would likely be re-infected when I came home, but we are keeping a close eye and disinfecting frequently. Overall, Mom had a mild case and had differing symptoms (Thank God…that would have done me in if otherwise), and she is continuing to recover. She has a lingering fatigue and cough (which our doctor said is to expected for a few weeks). And for that we are grateful. Thank you to everyone who did meal drop offs, tea drop offs, goodie bag drop offs while she was sick, it did my heart good to know she was well taken care of while I was inpatient.

I resumed my daily walks this week and its low and slow. I am starting back at 30 minutes and 1.5 miles which is half of where I was pre-covid. To say its frustrating would be an understatement as I was finally feeling like I was making forward progress from a cardiac perspective. I am allowing myself to grieve the fact that I had covid and took another hit to end the year and thats okay. I am grateful for my new heart, because had I had the old one, the team tells me I would not have survived. Its okay for grief and gratitude to coexist. To mourn that what was lost or challenging. I stood at deaths doorstep more than once in 2020 and thats a big pill to swallow. The Transplant team NPs have been so good checking in how I am doing mentally and physically and recognizing that Covid was another trauma on top of an already trauma filled year. All of us experience trauma in 2020, who could you reach out to and check in on this week? What if we started 2021 by adding a calendar reminder to reach out to one friend a week to see how they are doing, how you could pray for them or what great thing happened for them this week? 2021 is here, the pandemic is still here. We must all help carry each other through this year.

Perhaps my perspective is different about Covid because I’m immune compromised and it almost killed me, but I would beg you to follow all protocols. Wear a mask. Stay home.

#HOPEWINS
#BECAUSEOFJESUSANDADONOR

Hey everyone,

Thanks for all the love, prayers and support on sharing that I have tested positive for Covid. Many of you are just as surprised as we were, given how isolated we are/have been, except for medical appts. Are we nervous? Yes. Are we scared? Yes. Do we know how my body will handle an infection immune compromised? No. Do we have a lot of questions? 100% yes.

It’s 5:30 am as I write this and I just signed the consent to receive plasma. Hopkins is currently only offering this to mostly two groups of people: transplant patients and immunocompromised for other reasons, so I am able to receive it. It will help my body fight the infection. As a transplant patient it is not without risk to introduce new antibodies into the system, but all teams gave the go ahead and feel the benefits outweigh the risk. As this is a blood product, there is always a risk of a reaction but they are going to watch very closely. Prayers appreciated.

Speaking of the heart..what do we know/not know?

We are doing an echo, CT scan and I’m getting troponins drawn and an EKG every 4 hours to watch for even the smallest change. So far, the heart is looking good. Working a little harder, but doing well, with a slightly higher BP/HR.

Does Covid increase my risk of rejection? Not much is known specific to Covid, but any time your immune system is activated for any infection, it increases the risk of rejection.

Will they check with another cath/biopsy? TBD. I was actually scheduled for one next Tuesday but they generally do not want to take Covid+ patients to the lab because it’s not negative pressure meaning more risk of aerosol particles, thus exposing others. It requires the lab to be shut down and disinfected, thereby limiting access for critical patients. They will make the decision in the days ahead. It is likely I will remain inpatient until they can do a biopsy/cath likely when I test negative. This likely will not be a brief admission.

What else are they planning? I have had labs drawn pretty much every two hours for a variety of tests, per cardiomyopathy’s guidance. They also started me on a broad spectrum antibiotic until blood cultures result in case there is another infection anywhere else. They are still deciding about giving me some other medications for COVID. They also have to pull back on some of my anti-rejection meds to give the ability a little help to fight Covid.

It’s certainly a lot of coordinated care and transplant makes it way more complicated. But they are providing the same great level of care.

Symptomatically, overnight dealing with a lot of chest tightness and nausea but both are being managed.

One day at a time…because Hope Wins.

Another week down in the recovery process. As of yesterday, I am on modified sternal precautions. I can now start lifting, pushing, pulling more than 5 pounds. 🙌🏻 Every hospital has a different policy and Hopkins was 10 weeks of strict sternal precautions and it is suggested that I do two additional weeks of modified precautions given this was my second sternotomy.

We were so grateful to be home for thanksgiving. And we both admitted Friday, we didn’t exhale until Friday morning: both anxious we’d actually spend a holiday at home. Especially since I was having some abdominal pain for a few days. The team thinks it’s muscular, as it was right where my chest tubes were and I’d been hunched over working on a puzzle, but we are watching it.

We also had a metal ceremony for our turkey trot we did the week of thanksgiving. It’s still hard to believe I have walked a few 5Ks with no chest pain, when I couldn’t even walk down the hall without chest pain, just 3 short months ago.

We just returned from a quick 24 trip to Baltimore to pick up prescriptions, do some transplant labs and an appt with dermatology. Transplant patients and specifically cardiac transplant patients, are at increased risk of developing skin cancers, due to immunosuppressants. As part of my care, a transplant dermatologist is added to my list of specialists.

Today was to establish a baseline, discuss what precautions I need to take (SPF 50 everyday, sun protectant clothing, hats, etc) and to examine my peeling skin from my new meds. I really liked the dermatologist and she suggested starting with an $8 OTC cream for my feet and if that doesn’t work then we move to a more expensive prescription cream. I followup in one year and reach out if I need anything in the meantime.

We also redrew some labs today to check my electrolytes, kidney function and tacrolimus level. We are closely watching my kidney function as it’s a little above my baseline which is likely due to the diuretics that my heart still needs. The team will likely have to try backing off the dose a little if my kidneys are still a little cranky. My PCP immediately picked up that my creatinine was high off the last labs and was going to redraw, but since transplant was already drawing, we stuck me once. The electrolytes also help them to know if I’m becoming dehydrated or “too dry” and of course tacrolimus is a routine transplant lab to ensure I am on the right dose of my anti-rejection med. My general cardiologist also added an A1C and ID who is also following my case, added labs. So that’s 4 different doctors ordering labs. Bless it! That also means I had to coordinate with each of them about which labs they wanted. 🤪

I think the coordination mentioned above for just the labs, kind of explains my life right now. Every new medication that anyone prescribes has to be run by the transplant team to check for interactions and get their approval. So when my PCP suggested 3 last week, I had to contact the transplant office, who then had to check with the transplant pharmacist and then my transplant cardiologist. I generally talk with the transplant team at least 2-3x/week and with my general cardiologist and my PCP at least once/week and any other specialists as needs arise. At this point, my general cardiologist resumes care of the day to day management of my case (HR/BP, lipids, etc) and the transplant team manages anything transplant related (immunosuppressants, steroids, etc). Thankfully, they are all at Hopkins so they just cc/call each other to coordinate.

Unfortunately, I would like share something that has come up the last few weeks. We are hearing of people speaking on our behalf, that I am “doing great”. While we have been blessed so far in this recovery, you are seeing the highlights version, not the day to day management that transplant requires or the 10pm phone calls to the transplant NPs to manage a new symptom or report a change in how I’m feeling. You have caught a glimpse of our story, not the entirety.

If you are asking someone how we are doing, but haven’t asked us, I’m going to call you out on that one. Perhaps you could have picked up the phone and reached out to us to ask that question. Call/message and don’t stand behind “we didn’t want to bother you”. Trust me, we won’t answer if it’s not a good time. I share my story to help others but when I hear of people who we haven’t heard from speaking on our behalf, it makes me not want to share at all. Please don’t speak on our behalf and if we come up in conversation, I’d ask you to just say, “I’m sure they’d love to hear from you”.

Rejoice with us in the victories and continue to lift us up in prayer and please be mindful that the transplant itself was just beginning. The real work begins now…

#becauseofjesusandadonor #hopewins

I can hardly believe it’s been 9 weeks since transplant and that I’ve been discharged for 6 weeks! I’ve officially been home longer than I was inpatient at this point.

We continue to make some forward progress. We backed off my steroid dose this weekend which was good news! However the smaller dose also meant my sugars weren’t running as high 🙌🏻 and I required less insulin. I even had a few lows. It was a lot of coordination with the transplant nurses, where I would call them with every pre-meal blood sugar and they would tell me how to dose insulin and we are still adjusting. We celebrate the victory of getting to reduce the steroids.

We also had a little hiccup when we tried to back off my diuretic last week and I gained 4 pounds in two days. This told the team that my heart still needs a little help, so we went back to my old dose. You win some, you lose some. We are going to retry backing off the dose a little slower/gradually.

I just got off a telemedicine with my PCP and she figured out that my thumb numbness is tendinitis and we are going to try a thumb brace for two weeks. She believes when I was intubated for 5 days that my thumb was probably in a funky position and sprained the tendon. We hope the brace works or she would have to inject it with a steroid shot to get the inflammation down.

We also talked through how I was doing mentally. She forewarned me to ride the waves when I was discharged so we talked through: anxiety waiting for the other shoe to drop after 5 years of it constantly dropping (we hope it doesn’t), trying to process why I received this heart while others are still waiting, processing the trauma of 5 years of fighting to be believed and treated appropriately by many physicians (many of them colleagues of the same ones who sent me for a transplant) and how we went from fluid management to a transplant in one admission and 18 days. I’ve been blessed with this incredible woman and physician for the past 5 years and I don’t know what we’d do without her.

We’ve been continuing to get our steps in and earlier this week I walked my first 5K.

We’ve been signing up for virtual challenges to keep us motivated and even doing a “25 miles before Christmas” one right now. 🎄 Do we do it for the metal? You betcha! 🤣

As we head into thanksgiving we are grateful for my donors gift, my health and the fact that we are celebrating a holiday at home. Happy thanksgiving y’all!

Hey Friends,

Its been a pretty fantastic week over here. I had another Right Heart Cath & Biopsy (#6 post transplant) on Wednesday. My filling pressures were all in normal range! Such good news that we are trying to pull back on my diuretic dose as my heart doesn’t need as much help to pump. We will do a trial run for a few days at a lower dose to see how I do. If my heart isn’t quite ready, we will go back to my post-transplant dose.

We also got word this afternoon that I remain at a level 1 rejection, still just inflammatory! We will take it! We also seem to have found the sweet spot on the dosing of my anti-rejection med, Tacrolimus, as my level is right in the sweet spot where they want it. I even get to wait two weeks for labs (instead of weekly) and I get to schedule my next Cath for 4 weeks out.

We are waiting to hear about scheduling the next one as it would land right at the week of Christmas and when I talked to my doctor yesterday about spending the last 3 Christmas in the hospital, she said “nope, we arent doing that this year”, we will either push you out or up one week.” She prefers to do all the Caths for her patients so we are trying to find a time that works for everyone and she got access yesterday without issue, so yes please schedule me with Dr. S. The last 3 caths with one of her peers, it took us over 15 minutes to get access in my neck and lidocaine can only do so much. Dr. S is really good at ‘finding my sweet spot’.

Today I walked my longest walk yet post transplant and it felt good!

P.S. Dont be alarmed at the HR, transplant warriors run high.

I also was able to complete the online class that I was taking this semester this afternoon and turned in my last assignments. Student Insurance has provided such a blessing to us, covering Hopkins, but it also means I have to find time to do homework (all virtual) amongst everything else. But nailed it, because its all turned in.

I checked into if I didn’t take a class next semester how much my meds would be without this coverage and my yearly meds would cost $120K+. So safe to say, I will be taking another class next semester and for many semesters to come…Next semester I am taking American Sign Language (ASL) and I am really looking forward to it. I hope to learn some basic language so I can communicate with the hearing impaired, especially in this time of masks where lip reading is impossible.

In other exciting news, I was cleared this week to drive short distances (#starbucksdrivethru, anyone?) and also take a bath instead of a shower. Bless the Lord and a bubble bath!

We are looking forward to a quiet PJs, Christmas movies and a chicken (don’t judge) next week at home for thanksgiving. Oh and I might convince mom that it is time to bring out the Christmas decorations once the turkey has his day. Not to worry…I’ve got those Christmas tunes playing already. Its a small price she has to pay for the endless Hallmark movies that I have to watch this time of year…

We celebrate a great week. Rejoicing for a stable Cath/Biopsy. Thankful for the gift of my donor and their family. Please say a prayer for them as they experience this first holiday season without their loved one. I know they will be on my mind and close to my heart…

#hopewins #becauseofjesusandadonor

P.S. I did receive an email that our Hope Wins items are in production and should be coming to us in the next week or so! 🙂

P.P.S. If you are on twitter, follow me at KristinG0723 and check out the picture my doc posted yesterday after our Cath (with my permission, of course!).

Hello Friends,

Today is officially one month home and its been a big day in our house. We moved back upstairs this afternoon after spending the last month living in our basement area. Mom gets the gold star for sleeping on our guest bed for a month so that she was close by. To be back upstairs already, is huge progress.

We’ve also been getting in our steps everyday. My cardiologist suggested starting to wear my apple watch again to track steps and heart rate and to give Mom my old one so that we could compete for steps. Apparently, I have a competitive streak in me after all. Let’s just say, I may or may not have walked up and down the hallway the other night to get a few more steps after she went to bed 🙂 No shame in my game.

We added my Aunt yesterday and its pretty cool that she can be in Alabama but that we are connected and can see each others steps. We are going to try doing an actual competition next week if anyone wants to join or share steps, that has an apple watch.

If you missed facebook, last weeks biopsy showed mild rejection. It is the same as the week prior and it does not show a cellular rejection but rather an inflammatory response to the new heart. As medication doses are being adjusted and stabilized, the team is not worried. We ask that you would join us in prayer that it improves or remains the same. We of course are praying for improvement.

For those wondering, I will continue to receive weekly labs and Right Heart Caths every two weeks, until we do not see rejection. The next one is on the 18th.

At each cath, 4-5 biopsies are obtained directly from the heart itself. They also check the filling and output pressures from the heart. My pressures have continued to improve each time as my heart settles in to its new home. After the biopsies are obtained, they are taken directly to the lab via one of the Cath Lab nurses and pathologists review the samples. Preliminary results come back within about 24 hours and then I am called by the Transplant NPs with the results. Level 1 or no rejection, we do nothing. Anything above that would likely require us to return to Baltimore for an inpatient stay for treatment and a re-do Biopsy. So basically, we hold our breath for 24 hours after each cath and wait for the results. They are not worried about the level of rejection and we do not treat it at this level, so we remain hopeful, things will continue to improve. They assure us that most patients experience level 1 rejection at some point.

My Transplant Coordinator (NP) has been doing this for over 30 years and so I only get nervous when she gets nervous, which was only once when my white blood count was 1.5 (normal is above 10) a few weeks ago. Everything she instructs me to do gets run by my Transplant Cardiologist.

A lot of time right now is devoted to telemedicine appts, insurance companies, pharmacy calls and communicating with my home health nurse , transplant team/coordinator, my general cardiologist and my PCP. Any new symptom, change in symptoms or even if I just ‘feel off’ has to be called in to the transplant team as they monitor for rejection and infection, especially in these first several months. Here is just a glimpse into my call log..not including emails, mychart messages, home phone calls..

Over the weekend, my blood pressure was not stable due to the switch in medications last week and it was causing me to feel short of breath, headaches, fatigued and at times nauseous. There are certain blood pressure parameters that I have to page the on call NP for and we hit them Monday Morning. It was so much back and forth on the phone and now we are re-running labs this week to ensure there is no infection or anything else brewing and the *new* home health nurse did pay a visit today to do an eval. Unfortunately, two attempts at labs were unsuccessful today, so we are trying again Thursday. My veins are tired and there are about two good ones left. I kid you not, two good veins.

After all the back and forth, we increased the BP Med and will see what labs show. We have to give the med a few days, but are we are all hoping that I just needed a higher dose. This is the new reality. Any change is a workup.

So while, we spent some time over the last week dealing with a few hiccups, we did enjoy some time outside on the back deck with the pups this weekend just chatting about life and enjoying the weather (bless you starbucks giftcard senders!). We are both truly grateful for the forward progress I am making, how well recovery is going and how well I feel.

The transplant team warned us both that in the weeks/months ahead, we will ride a tidal wave of various emotions. I’d say we both are slowly starting to work our way through the “did that really just happen?” phase, we find ourselves in right now. But we are also truly grateful and at peace knowing that this was the right call. I’ve started working on a post that will show the true magnitude of how God was working over the last few months and hope to share in the next week. Because #hopewins #becauseofjesusandadonor

Are we finding our new routine? Yes.

Is it a lot of work? Yes.

Would I do it all over again. Yes, in a heartbeat 🙂 #punintended

I interrupt your election day coverage with this weeks update.

We spent part of our day driving to Bethesda to Suburban Hospital (Hopkins based Hospital) for a pre-procedure Covid Test. My nose will never be the same from all the pre-procedure tests I have to have done. For every outpatient cath/biopsy, I have to have a Covid test with 48 hours for the safety of everyone.

We are heading back to Hopkins Thursday AM for a mid-day Right Heart Cath and Biopsy. We are praying for easy/safe access (I have a lot of scar tissue in my neck from multiple previous lines), good filling/afterload pressures, no rejection, for the medical team on my case and a safe procedure and recovery. And good labs!

My labs improved over the last week and my Tacro levels are finally back right in range, so the team was quite happy. My other labs also improved so we were able to resume all of the anti-rejection/antibiotics/transplant regimen. Its a delicate dance, where a lot of meds are adjusted on a weekly, sometimes a bi-weekly basis. But the Transplant NPs assure me that this will eventually lessen in frequency as we find the right regimen and these adjustments are common at the beginning.

As I mentioned last week, I had an appt with Dr. M by general cardiologist and the master of Lipids. There was something so beautiful to get on zoom and tell him I felt good and for him to smile so big and be so happy to see me doing well. This may just seem nice, but we had a lot of stressful telemedicine appts and subsequent admissions where he knew clinically I needed to be admitted but hated doing it, because we both knew we never really made forward progress during those admissions. To be able to talk through what our plan could be like moving forward…was huge for both of us. He even started the conversation by asking, “how are you doing? Not like clinically and symptomatically but how are you doing? Tell me how you think things went”. As much as Hopkins may have driven me crazy this past year (you remember months ago…I was ready to fire them all), those who are following my case, they truly share in the setbacks and the successes. Thats important to me.

Anyways, back to the appt itself…We had drawn a lipid panel the week previously, which he was able to review and my lipid panel looks really good at the moment. This is not due to the new heart, but the regimen I was on pre-transplant plus risk factor modification like diet and exercise. I’m on what I can be on right now, Crestor, Repatha and Zetia. Some good news is that we will likely not restart one/two of my medications but we also have to wait a few months to let things kind of trend, before we will discuss adding those back in. My transplant medications affect a lot of things, that can also impact lipids. He is also trying to get virtual cardiac rehab approved, so fingers crossed he can, as in person is not an option during flu season and the pandemic being immune compromised.

In the mean time…I am slowly increasing activity everyday. My neighbors might think I’m a little strange, as somedays I walk laps around our deck for 30 minutes. Other days, we go to an empty parking lot. Other days, I walk up and down our hallway. The goal is to slowly increase to 60 minutes a day in the months to come. If you have your health, find a few minutes to work that little heart of yours. Do that for me. Do that for you.

I find during these walks I like to pray for my donor and their family (among other intentions) and I find myself thinking about them..did they play sports? Did they have siblings? What was their family like? Did they like icecream? What was their favorite color? I even find I talk to my donor sometimes about our heart and share a little about what I hope to now accomplish in the future..will I write that book? Will I meet someone? How will I give back to the world and my community? Dreams that I felt I couldn’t dream before, because life was so unpredictable.

A wise friend of ours put it so beautifully that God had to allow my donor’s work to be completed first on this earth, so that it was the perfect heart for me at the perfect time and I’ll do my best to honor that.

Just wanted to take another moment to say thank you again for everyone’s generosity. To those who made donations, purchased shirts, sent gift-cards, helped pay for prescription refills this week, made grocery drop-offs… thank you. We used some of the donations to pay some medical bills starting to come in, as well as make some reservations for our upcoming visits to Baltimore.

And to those of you who sent an additional giftcard with the note, not to spent it on medical expenses but something that made us smile, please know we did. We have a few tucked away for a day that we need a pick me up but we also used some to download a few kindle books and to order Mom a Mama Bear shirt after she spent two days raising he** with the home health company (lets just say we have a new nurse starting, I should not be telling the nurse which labs were ordered or what color tube to use). There isn’t anything like a mother’s love, but there also isn’t anything like a Mama Bears growl. 🙂

#HopeWins

#BecauseofJesusandadonor

Love, K

Its hard to believe we are already 5 weeks post op! And as of midnight last night, I am off of 24 hour required supervision at home! Not to worry…Nurse Mom is close by!

Overall, we are just dealing with recovery this week. While, I did accept a high risk heart, we have chosen to only share why the heart was considered high risk with family at this time, out of respect to my donor. It does require me to take medication for 3 months. My stomach doesn’t love the new medication, but the transplant team and pharmacist are trying to come up with a solution for my stomach. Prayers that the medication works and that we can help my stomach, that would be appreciated. We must complete this 3 months of medication before we can restart my lipid medications.

Speaking of Lipids…thats been the most asked question? Will I get disease in the new heart? We surely hope not. The idea is new ‘pipes’ not exposed to 32 years of genetic conditions are setting me up for better success…The Transplant Team was already in discussions with my Lipid Specialist Cardiologist while I was inpatient and he followed my case the whole time I was inpatient. I had a telemedicine appt with my PCP this week who was so excited for me and we talked through everything, but her next question was “whats Dr. M’s plan for your lipids to protect this new heart?” Good question.. we have a hour long telemedicine appt Friday to discuss this plan…

Another question has been how do you feel? Still Chest pain (Angina) free. Mom and I walked half a mile today and I had no chest pain. You guys…I couldnt walk more than down the hall before without chest pain. My old heart, god bless it, was bad. The cardiomypathy team was shocked at how bad it was when they studied it after transplant. In time, I will go more into this, but the Lord truly has His hand over my life.

A lot of people have been asking, hows your appetite? Well, the team wants me to eat, so I eat what sounds good (within reason). There are restrictions due to drug interactions. We are also dealing with steroid induced hyperglycemia, so we have to watch that. That celebratory pint of ice cream we bought? Still in the freezer untouched. My endocronologist and the transplant team are coordinating treatment and I check in with my endocronologist ever 2 days with my numbers as we try to get numbers in range and adjust insulin. I’m taking more insulin in a day than I did in a week pre-transplant. Steroids are used as an anti-rejection medication and slowly tapered off, but they cause you to be insulin resistant, so it requires a lot of insulin.

We are also trying to get my Tacro levels (anti-rejection) levels down. Thanks to my stomach calming down in one sense, lets just say meds have time to actually be absorbed before ‘passing through’ (haha!) so now my levels are high. We are running labs every 3-5 days and pulling back the dose.

I can honestly say I have never called/been called by doctors office so often but the transplant clinic is outstanding and no question or concern is too small or dumb to them and they respond very quickly. My PCP encouraged me this week to remember that this team and she have always believed me, that I am not having to prove myself again, so to let go of the stress of calling in and allow this team to care for my concerns.

The team was realistic that it will take about 3-6 months to feel like myself again and I will be honest, this recovery is 10x tougher than my other cardiac surgery. This recovery time too will one day be a distant memory and so we take the sore moments and give praise that they are often a little less than the day before.

Lastly, Mom and I are truly overwhelmed by the generosity and love being sent via mail, email and on our Hope Wins shirt sale and donations. This will be of tremendous help to us. We are already putting some of the donations to use toward the round of medication refills this week. Thank you truly! We have been driven to tears of gratitude by everyones support. Every donation is truly a gift! Proper thank you notes will follow (because my mama raised me right) in time, I just ask for your patience as I can only tackle them as my energy allows.

#HOPEWINS #becauseofjesusandadonor