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