Welcome!

A Little About Me

Hi! I am Lorrie Hill! I am a born and raised Texan. I am a nerd for anything science, especially when it comes to human physiology and health. I enjoy a good book, a long Netflix binge, going to musicals, spending the day at a beach, and enjoying a nice walk outside. I bleed maroon and will be graduating Texas A&M this spring with a B.S. in Kinesiology. Though A&M will always have my heart I’ll be jumping ship to work towards an MPH in Epidemiology at UTHealth in Houston this August.

Why Did You Create A Blog?

First of all, I have always enjoyed writing. Being from a science background, most of the writing I do is very technical, I wanted a place to be creative and talk about life.

The main reason I started these ramblings was to keep family and friends up to date on how I was recovering from my third open-heart surgery during the summer of 2017. After recovering I decided to keep sporadically posting about what was happening in my life, the lessons I was learning from it, and perspectives that I hoped could help others.

So What’s Up Now?

I hope to keep this blog going as it has been. I have a lot of things coming down the pipeline in the net year or so. I hope to talk about the rest of my undergrad at A&M, my move to Houston in May, and my journey to a heart transplant.

Does some of this seem doomy and gloomy? I mean, you’re not wrong. If you’re new here my faithful followers can tell you that I like to keep things as light-hearted as possible and inject humor where I can.

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Five Months (Day +153)

            One thing I have been asked about a few times in the past five months is; “What things are you planning to knock off your bucket list now that you have a new heart? 

            Truth be told, I have never really had a bucket list. I have always felt them to be finite. One and done things or experiences. Don’t get me wrong, I have lists of things that I would love to do if given the chance and goals/dreams I would love to achieve, many of which could be found on a bucket list. For being such a deadline driven person, I have never been a fan of putting “due dates” on life experiences. I have found a list of goals and dreams leaves space for hope and leaves space for change (the one thing certain in life).

            During the spring of my third year of undergrad at A&M I took Anatomy and physiology II where I had a fantastic professor and lab teaching assistant (TA). After a failed third open heart surgery, I was starting to realize helping people through a clinical setting would most likely not be a feasible option, and I was pretty down in the dumps about it. This professor and TA helped me better locate the academia “candle” and lit the spark by showing me how academic teaching can help others by pushing them to know more and become better studiers, collaborators, and overall better people. I don’t think either knew how much they inspired/motivated me, but I think about that course often. Since then I have and have had many other professors, advisors, and mentors who have helped fan the flame and use that flame (if we want to stick with the same metaphor) to show me other fields as well. Though I may have re-turned my focus to something more clinical than academic, that semester helped me set the goal of becoming a Teaching Assistant someday. I am probably one of the few weirdos who has a goal to be a TA, but I did it! This fall semester I am a TA for Epidemiology I, a class that all MPH students have to take at some point. We had our first lecture and I had my first office hours today on the five-month milestone of my heart transplant. How neat is that? I am so excited for this opportunity and I hope I can help students like that A&P professor and TA did for me.

Along with crossing the “becoming a TA” off the goals/dreams list, I graduated weekly PT at the end of July, had a third “everything looks great” transplant appointment where more medications were weaned, I’ve had bloodwork done about every other week, I finished an online class, found a bit of a workout groove, and have enjoyed spending virtual and in-person time with friends and family. 

Finishing weekly physical therapy was a huge milestone, in my opinion anyway. PT was my constant from February 11th (day 2 in the hospital), to April 24th AKA, discharge. Monica, Michelle, and Almeda were there for me through the frustrating days pre-transplant, the hard yet exciting days immediately post, and the anger/frustration steam that had to be burned off when we kept running into rejection before discharge. While in-patient, PT (and trying to specd as little time as possible in bed) helped minimize muscle atrophy. Considering how much muscle I lost, it would have been much worse without them. Once outpatient, Michelle helped me strengthen my muscles, bones, new heart, and confidence. The weekly sessions allowed us to figure out how to safely push my limits. We watched my heartrate to establish new trends (transplants surgery cuts the vagus nerve which is like the brake pedal of the heart, this mean heart rate changes with molecules that travel through the blood stream rather than from direct innervation. This makes heart rate response weird and different for each recipient). Most importantly these weekly sessions helped me crash through some of the mental walls I had built up in regards to exercise over the past 24 years. I definitely pushed the limits, especially during undergrad, in regards to physical activity so it took me a while to even realize I had walls to break down. Long story short, PT is the best. It helped make this the easiest open heart surgery recovery and has simply kept me sane. Luckily my PT journey is not over, I still have monthly check-ins for the next few months.

Now that I am done singing praises for the PT field… I am down to taking 10mg of prednisone (that should go down to the next wean dose after my biopsy next week) and am down to taking the lowest dose of Lasix I have ever been on. To be honest, I am really not sure if my body is even responding to this dose because I have taken Lasix for so long, but at least I am not fluid overloaded! I was able to stop an antiviral that had to be taken 4x/day, once that happened I felt like I was not just waiting around to take the next dose. I also got to stop taking a second prophylaxis antiviral. Given all of this, I am down to taking 14-15 pills in the morning (depending on the day) and 8 at night. Yes, this still sounds like a lot, but considering I came home on 18-19 in the morning 2 at 1, 2 at 5, 9 at night and the 4x/day mouthwash – we have come a LONG way! I also haven’t taken meds just twice a day in at least two years. It’s all so exciting!

It has been exhilarating to experience this life for the past 5 months. It is crazy to get those “this time last year” pictures on social media and my camera roll, and realize how sick I poorly I was doing despite trying so hard. It is wild to realize that I am back to taking a course load equivalent to my first year of undergrad, but in graduate level courses. Last, it was absolutely mind-blowing last week when I realized this is my first full (fall/spring) semester of higher education, High school (to some extent), and middle school that I have not been in some level of heart failure. Despite not having an immune system, this is the healthiest I have ever been and it is all because of my donor and their selfless family.

-LH

Day +100

Hip, Hip, Hooray! It’s +100 day!

Okay, I guess it is time to get back into the rhythm of writing a post every 50 days like I did pre-transplant.

The most common questions I get from people now are “How are you doing?” and “What have you been up to?” The answers to these are “side-effects suck sometimes, but I am actually doing great!” and “I honestly haven’t been doing a whole lot.” 

I realize I am extremely lucky that my post-hospital, post-transplant life has been relatively uneventful. I think coming from 24+ years of chronic hypoxia due to congenital heart defects has made handling the blips of many medication changes and constantly going in for bloodwork, appointments, physical therapy and other tests much easier. It’s really not too different, we are just dealing with a different beast. 

Since the last time I updated the blog I had a 5th biopsy, a second post-transplant clinic day, had fun at the beach, started an online class, started a research project, hung out with friends, and really ramped up my workouts.

Even though we went during a heat wave, getting out of Houston for the first time since Christmas to spend a week at the beach with family was fun and much needed. It was probably the first time I have ever gone to a beach and not put my feet in the sand and water. Galveston is a bit icky and I was not willing to risk it with my very suppressed immune system. 

Want to hear a joke that circulates in the transplant community? Spray on sunscreen! Hah! With our suppressed immune systems and meds that make us more susceptible to the sun, we are at higher risk of developing sun damage and melanomas over time. Therefore, you need SPF50+ sunscreen and you have to rub that stuff in often while outside.. Being able to walk as far as I wanted on the beach and being able to work out on the front porch in the salty air while taking proper precautions felt so novel and amazing.

On the second day my mom and I took a vacation from our vacation to go back into Houston for my second clinic visit since receiving my heart. We got our second “everything looks great” report and had a nice chat with the doctor who asked me when I was coming to help them with research data analyzation, to which I responded “whenever you guys want me and thing its safe for me.” I’m still waiting to start, haha! At that appointment we also decided to take the plunge and decrease my Lasix from twice a day to once a day for the first time in two or so years. 

Two weeks later I returned to Texas Children’s for my 12 week biopsy, which also counted as my three month biopsy despite being a few weeks early. At the three month mark my transplant center likes to not only like to go through the neck for the typical biopsy and hemodynamic pressure measurements, they also went through the femoral vein in the leg to perform an angiogram to get a baseline of what my coronary arteries look like. My coronaries and pressures looked great. Most exciting the rejection score of the biopsies was the best it has been and significantly better than the previous biopsy. The score was still a 1R, but it was pretty much borderline 1R/0R! Since my rejection score looked good and my last steroid wean was a month before, I got to decrease my dose again! Any steroid decrease is more than welcome in my book! 

Though I’ve been told to avoid large groups and crowded spaces, I have been able to see a few vaccinated and not sick friends in person which has really been the best thing for my soul. Between the pandemic and not being able to have friends come visit me in the hospital, I did not realize just how much I missed and I gain from interacting with my people in-person. Humans were made to be in community with each other.

Since I did not have much going on in June and I felt motivation lacking, I decided it would be beneficial to register for an online class for the second half of the summer. Not only would it give me external goals and motivation, but it would give me somethings to work on. As the motivation started kicking in over the past two weeks, I finally made some headway on a research project that I kind of started a while ago, but never made much progress on. Sometimes starting is the hardest part.

My favorite part of the past 50 days – well really this whole journey, is having the ability to build stamina and strength. My dear donor has already given me more stamina than I have ever had so it is exhilarating when I am able to push through a cardio session and have it not destroy me for the rest of the day. Most days I now wait to go for a walk/run or indoor cycle until the end of the day in order to burn energy to increase the likelihood of beating the prednisone insomnia. Yes, that last sentence did say RUN and BURN ENERGY. On the fourth of July I went for an outside walk for the first time in a while since it was only in the low 90s (lol – its so freaking hot this year). I was feeling really great so I decided to see what would happen if I just picked the pace up to a jog or run. It just happened. My fingers stayed pink. I didn’t feel like I was going to pass out. I didn’t even get the feeling like I had to outright stop. Given I have never really run I did three spurts of ~100 yards on my mile and a quarter route. I have never ever run 300 yards in one outing, ever. Even though I have replicated it twice since, I still cannot believe I can actually run AND still have some energy when I get home. Also, burning energy? Definitely not something I thought I would have the luxury of doing. Before transplant it was a struggle to have enough energy to stay awake and functional from 9 AM to 9 PM so I could take medications. It is all still just so mind-blowing.

While we are all celebrating this quality of life that we never thought I would have, It is important to remember there is another family and set of friends who is mourning the loss of their loved one. I am extremely thankful for my donor family’s decision to donate life and I hope it brings them comfort knowing they likely saved and improved the lives of multiple people. I am forever grateful.

-LH

Two Months – 5/31/2021

            Memorial Day is a day to remember those (in the military) who gave their lives to increase the quality of lives of others they had never met. I find it special that today marks two whole months of improved quality of life my donor has given me. My donor and their family decided to give me a life with fewer physical burdens than I had before, just like our service people give our country. 

            This month has brought lots of walks, finding outdoor spaces in Houston to explore, enjoying slow mornings some mornings and being at the vampire lab at 0800 other mornings. It has brought a post-transplant clinic appointment, a fourth biopsy, physical therapy, and lots of stretching and strengthening. I was also asked to be a bridesmaid and finally got to meet my brother’s girlfriend.

            As my mom has told it to multiple people, “we have spent our whole lives always looking for the shortest, least arduous routes wherever we go. Now, when we are out walking Lorrie is the one asking to take a longer route. It’s just crazy!” Yep, that about sums up what a dream this post-transplant experience has been. On Mother’s Day I walked a mile and a half without stopping. Last week I walked 2.16 miles in the morning then about another mile in the evening.

            The only “complication” I have had this month is a sprained ankle… I was walking, having a grand ole time, stepped on the edge of a crack and my ankle went “nope” and inverted. I have the bruising and skinned knee to go along with it. Due to my suppressed immune system healing is a bit slowed, but immune suppressed healing is much quicker than the hypoxic healing I have had for the past 24 years. Even though my ankle still looks bad, it dies not hurt anymore and I already have full range of motion back and this all happened four days ago. Oxygen is so great.

            Though I am generally feeling amazing, if I am being completely honest some of the medication side-effects have been a little tough and downright strange. I haven’t talked about meds on this blog, but they are an extremely important part of transplant life. When I got discharged I was taking 18-19 pills in the morning, 4 throughout the day, and 8 in the evening. Now I am down to 16-17 in the morning, 2 in the afternoon, and 9 in the evening along with an antiviral mouthwash 4 times a day. Now, 26-27 pills does not equal that many different meds. I am on. I am currently on about 14 different medications and supplements to keep my body going and to help ease the side effects of some of the other meds. My main side effects have come from tacrolimus (one of two antirejection meds that I will be on for life) and prednisone. Tacro has caused tremors, they’re not terrible, but they are definitely there -sometimes more than others. This medication is also the reason for so many visits to the vampires at TCH’s lab. These levels have to be kept in a certain range for at least the first year, thankfully this range will decrease over time. Prednisone is the med that is causing the most troubles, mainly some fluid retention (hence the diuretics), chipmunk cheeks, the munchies, and seriously irregular sleep (finally decided to start melatonin). Thankfully, though started a month late due to rejection, the prednisone wean has already begun and going down by just 5 mg has improved sleep and decreased fluid retention. I am not writing this to complain, I am writing this to educate. Transplant trades one disease of heart failure for one of immunosuppression, its not a bad change, it is just taking some time to get used to and for my body to adjust to a new organ and new way of functioning.

            While on the topic of my immune system. My pre-transplant immune system was much more badass than I thought. I got my second dose of the Moderna Covid-19 vaccine 8 weeks before transplant. A week post, my team ran an antibody test to see if my antispike antibodies survived the heart-lung machine and all the initial immune suppression given. The antibodies were there! Then my immune system decided it wasn’t going down without a fight and gave of two biopsies of moderate acute rejection. As read in the last post, this rejection bout was treated with 4 rounds of pulse steroids, one large infusion of IVIG, and three rounds of rabbit antibodies. My team ran the COVID antibody test during my biopsy last week and somehow the antispike antibodies made it through everything! We don’t have a numeric value, but we are assuming I do not have a very strong defense, but at least I have something. More importantly I was the first one at TCH to be transplanted after being fully vaccinated which will help the team make decision for other pre-transplant patients in regards to the COVID vaccine as it becomes available for younger patients.

            On May 25th I had my first post-transplant clinic appointment. That is when we decreased the prednisone and diuretics as well as started melatonin. So far these changes have been great. I also heard the words “everything is looking really good…perfect and is moving in the right direction,” come out of my doctor’s mouth. Y’all, I don’t know when the last time I heard that at a cardiology appointment. I actually don’t know if I have ever heard those words in that context. The milestones that have happened in the past two months have been incredible to experience. I also had a fourth biopsy last week. Pressures throughout my heart still look good and normal. I also got another 1R on the acute rejection scale, which is in range and nothing to worry about. That being said this 1R looked better than the 1R from the third biopsy. My immune system is just taking its time settling in to being okay not being so robust.

            In month three I look forward to keep building my strength and stamina, maybe run for the first time (?), spending time with my aunt Lorrie for the first time in a year and a half, spending a week at the beach with my grandparents who I have not seen in six months, turning twenty-five, and just enjoying life.

            As always, my gratitude overflows for my donor and their family. I am truly honored to be given the opportunity to live this life. 

-LH

Day 399 to Day +29 & National Donor Day

Many of you have followed the excitement of the past four weeks on Facebook or my Instagram @the_heart_of_the_journey. That being said, I thought I would recap and reflect here while waiting for the results of my third biopsy.

Between days 350 and 399 on the transplant list I continued to decompensate. Going back and reading my Day 350/1 year post, it looks like I left you guys right after the deep freeze Texas had and after having upped my Milrinone dose from 0.25 mL/Kg/min to 0.375 mL/Kg/min. Shortly after this adjustment when the team recognized that I would be there for the long haul I got moved off of the adult floor because they needed my nurses up there for other patients. I would wait on the 23rd floor CPCU for the rest of the wait.

I was on the 0.375 dose for about six weeks. It kept me going for a while, but there was also a slow decline happening as well. Numbers wise, other than o2 saturations, hemoglobin, and hematocrit I looked pretty good, but I still felt exhausted most, if not all of the time. Some days were better than others, but let’s just say that I had zero problems sitting in bed or in a chair and working on school work, watching movies, or napping. I had physical therapy twice a week to help keep me moving and decrease muscle loss as much as possible. I would also go on at least one walk and a shower each day. These walks consisted of walking the loop around the floor once, stopping 3-4 times so I could catch my breath and or bring my o2 sats out of the 60s/low 70s. We had been thinking about increasing the Milrinone dose for a while to see if it would boost my energy levels any more. the Sunday before I got my new heart the doctor on call decided “we’ll never know unless we try,” so we tried. Those next three days before transplant were actually some of the best days I had had in the hospital pre-transplant.

When I first got bumped up to status three I was on three offers (at #122 on a far away offer and #26 and #22 on more local offers) in the first two weeks. Then there was nothing for three and a half weeks. This was a bit discouraging, but my team told me something will come when we least expect it. The next week I came up at # 16 for a heart, then the following week, on March 30th – day 399 on the list I came up at #1!

After spending seven weeks in the hospital seeing the same 6 doctors and the same 6 NPs and PAs you get very close to all of them. The day I got the call, the doctor that has been my rock from the very beginning along with one of the others came in and started chitchatting as I was finishing up dinner around 6:30. eventually the chitchat got quiet and Dr. Hari said “I was on my way out and they finally gave me permission to come tell you that you got a match, you’re #1 on the offer. It looks like a great match and we have accepted it, but we won’t know for sure if it will work until you are in the O.R. and the procurement team has laid eyes on it.” We were all in tears of excitement, I had waited a long time for this.

My mom had gone home for the evening about a half hour before I got “the call,” she was getting ready to feel pretty crummy the next day since she had gotten her second COVID19 vaccine that morning. Needless to say, she turned around and came back that night to sleep on the couch in the room. Since we knew the surgery would be long and driving at night sucks, my day waited until early the next morning to drive to Houston, Despite having just returned to Dallas that Monday.

The night before transplant was full of lots of tests. At least 16 vials of blood, an EKG and a CT scan. We spoke to two surgeons, the main one being the director of the adult congenital heart surgery program who had come from Canada where he specialized in transplanting adult congenital heart patients, and the ICU team that would be caring for me on the Adult CHD floor.

I got wheeled back for surgery at 11AM the next day (3/31/2021). The surgery took about 11 hours given all the scar tissue that had built up in my chest over the years from three prior open heart surgeries. Along with taking my old heart out, and putting the new heart in, my surgeon also had to deconstruct the Glenn shunt. This involved removing the superior vena cava (SVC) from my right pulmonary artery, patching this artery, and attaching my SVC to the donors SVC and right atrium. They also had to make sure to attach the donor heart at the main pulmonary artery above where the pulmonary artery band I had placed when I was two was so that I would no longer have a restriction there.

The first few days in the ICU were a little rough. I woke up partway through the first night with the breathing tube still in, of course I was not happy about that. I felt so congested that I felt like I couldn’t breathe, but I couldn’t tell them. I tried to play charades, but couldn’t. I motioned for something to write on, but I was so drugged up still that I literally could not write. Thankfully the ICU team pulled the breathing tube the next morning. I also struggled with low blood pressures the first few days. The first day out they had to start me on epinephrine and norepinephrine to try to get it to stabilize. the first dose they give hits the body HARD, 10/10 do not recommend, it was probably one of the most jarring experiences to have my heart rate go through the roof while my blood vessels vasoconstrictor for a few seconds to bring my blood pressure up to a safe level.

During all of this I had two of my favorite ACHD nurses (Fernando and Chad), and I ran those guys ragged the first two days. I felt kinda bad about it and apologized a few days later when I was more with it, they gave me a big pass. Every time I would freak out about something they would put the vitals monitor in front of my face and point to my O2 saturations of 97-100, the highest I had ever seen, they would also point to the stable, not all over the place heart rate. They knew I liked numbers, they would calm me down with numbers and stable trends.

On day three post-op the physical therapist I had worked with since admission decided to pick up a shift on a Saturday and was able to help me take my first walk post-tx. The plan was to make it to the door and back. Yeah, I made it through the door, then down one hallway, and another, and all the way back. My first walk, three days out while I still had chest tubes and lines coming out of everywhere, I was able to walk further than I could the day before transplant. It was an emotional experience.

Between days three and five I had my PICC line, a line in my foot, one arterial line, and one IV pulled. On day five I had three large chest tubes and the external pacing wires pulled; that is when I really started to feel better On day six I had an IJ line pulled and came off of ICU status, I was feeling pretty good at this point. I already had way more energy than I did before the transplant. Most importantly, I was PINK for the first time in my nice. No more sickly, cyanotic skin, nails, gums, and lips. It ia still so surreal.

On say seven I was moved back to the 23rd floor. Since I was doing so well the team was kind of thinking of sending me home before my first biopsy at two weeks out, but then we realized that I was hardcore retaining fluid. We started IV diuretics on a Friday and by Monday I was down 4-5 liters of fluid with more to lose. I was kept on these IV meds until a few days after my first biopsy and in total lost about 8 L. The more fluid I lost the better I felt.

On day 12 post-op, when I still had quite a bit on fluid, took me to the stairwell just to make sure I could do them slowly and safely. I was nervous, but excited. Could my body really do this? I spent YEARS doing anything to avoid going up stairs. I would walk down stairs or down a ramp to get to an elevator to go up (I am talking to you UCG and WCG at A&M). I went up the first two steps slowly, then Monica said, you got this, go1 I went up one flight not even breathing hard. I went up the second right away starting to tear up from how freeing it felt. My withered away muscles started to wake up but I still felt good so I asked if I could try one more. She obliged and when we got to the third landing we both just started bawling with excitement, gratitude, and happiness. It was the first time in my life that I had climbed up three consecutive flights of stairs and all that was “wrong” was that my leg muscles felt like jell-o. I still tear up thinking about this experience.

Fresh out of transplant for for the first year, biopsies are done often because about 1/3 of transplant recipients experience acute cellular rejection within the first year. These biopsies are done by catheter through the neck and/or groin. They take 6-7 very small pieces from the right ventricle and measure pressures throughout the heart. When going through the groin they can also check the coronary arteries since stiff coronaries can happen over time in transplanted hearts. The small pieces are sent to the pathology lab where they are stained on slides and graded 0R, 1R, 2R, and 3R. 0R to 1R is considered within normal range. Since I was feeling so well we thought my first biopsy was going to be fine and I would be good to go home soon after. Unfortunately. that did not happen. I got a 2R, moderate acute cellular rejection everyone was shocked. The good thing about acute cellular is that is treatable.My team gave me four large doses of IV steroids then decided to add a massive bag of IVIG to cover our bases. I stayed there another week to let it all “marinade.”

So, the next week I had a second biopsy to make sure we had treated the rejection. Again, I got a 2R and again, we were all shocked. Though it was 2R it was borderline 1R/2R, but my team did not feel safe not treating it. After the biopsy I had three rounds of antithymocyte globulins (ATG), made of rabbit polyclonal antibodies. ATG was pretty rough on my veins. By the time I got this treatment it was 10 weeks into the stay so my veins were already shot, but between the pre-meds and actual ATG we literally burned through four veins/IVs. Believe it or not the IV benadryl was the worst part, It was so bad that I had to ask the pharmacist if I could take oral benadryl for the last round, thankfully he said yes making the last round much more bearable.

The last round was on Friday, and during Saturday rounds my team told me there was no clinical reason to keep me inpatient so they let me go home. Being home did not feel too real until yesterday (when I started writing this post). I had a third biopsy and finally got a 1R, within normal range! it was the first time I went in for a procedure and left the same day in five years! I was always too complicated or unstable or too slow to recover before transplant.

Ten and a half weeks at TCH is a long time. The first seven weeks I really didn’t mind, I needed the help. I didn’t have an appetite, I was in heart failure, I couldn’t do much for myself. The last 3.5 weeks got more difficult as I started feeling better and gained back my appetite. The food started getting old real fast, my one walk with multiple stops pre-transplant turned into 3-4 walks a day of 3-4 laps each post-transplant. My worst 6 minute walk test pre-transplant was 173 meters, Wednesday during my OUTpatient PT evaluation I walked 423 m without stopping once – that’s a 243% increase in distance. There is no way this would have been possible without my donor and their family choosing to save lives in one of the worst moments of their lives. For this, I am forever grateful. especially today on National Donor Day (4/30)

The most common questions I have gotten from people since transplant are “Do you know anything about your donor?” “Are you going to meet you donor’s family someday?” The answers to these are: we have zero information about my donor, other than the heart was on ice for two hours and it flew and I don’t know if I will ever get to know or meet my donor family. I want to give them some time ti grieve, but I plan on writing them a note in a few months and giving it to my coordinator to get to them. I will then leave it in their hands on whether they would like to meet. If they would like to go public, I will introduce them If not, please respect their privacy. That being said, I would love to meet them and share how grateful I am that they chose to donate life that has completely changed my life. They have given me a life I never could have imagined, from pink fingers to climbing stairs and so much more time to explore new things.

I am also extremely grateful to have such a large community and support system who has followed along and helped carry me through this journey. If you are not already a registered organ donor, I hope seeing what organ donation has done for me encourages you to register. Registering is not enough, you also need to make sure your family knows your desires. These conversations about end of life can be difficult to have, but next of kin has the final say on organ donation, even if you are registered. Go to register.org to register or check your registration status.

-LH

350 Days – posted day 361

One year listed is coming in HOT, it’s crazy to think about!

A lot has happened in the last few weeks, so I figured I would let y’all in on the action.

On January 25th I had a day full of appointments. We started the day learning (again) that I have zero allergies despite having all the symptoms, so that’s cool. I then had an echocardiogram and met with my transplant team. Since I had been feeling pretty crummy and run down again after the two week energy burst from the beach, they said I should plan to come and be admitted sooner rather than later to try out IV Milrinone. I told them I needed another week or so to fit in one more outpatient appointment and to get my second Moderna COVID-19 vaccine, they just said to give them a 3-4 days heads up. On February 3rd I let my coordinator know that I was ready to come in on Tuesday the 9th. Everything was set in motion.

I got my second dose of the vaccine on February 5th and only had a slightly sore arm the next day. To be honest I was a little disappointed in my immune system. I was hoping to get at least a little more of a reaction to the second dose than I got from the first so I would know my immune system recognized the spike protein and knew to react to it. That being said, I do feel a bit safer now knowing I have all available protection while knowing it is not perfect.

Texas Childrens has been the top ranked congenital heart center in the country for a number of years. As more kids with heart defects are becoming adults with heart defects, adult congenital heart care is on the forefront of development. Texas Children’s is the first hospital in the country to build a floor devoted to adults with congenital heart disease. Half of the floor is an outpatient clinic and the other half has a PT gym and 16 inpatient flex rooms that can serve as ICU or regular floor rooms. This new floor opened up about a month ago and the inpatient side is able to operate at half capacity right now.

Why am I explaining this? It is because yours truly has been a resident of room 8 on that floor since Wednesday, February 10th. Our original plan to have me admitted on the 9th fell through when the transplant team was getting everything set up on Monday for me to come into the ICU on Tuesday. Unfortunately they ran into a new hospital protocol that all adult heart patients must be admitted to the adult floor until it reaches its half-capacity mark, so we would have to change admission day to Wednesday to make sure everything ran smoothly.

I was admitted on Wednesday around 4 PM and was started n Milrinone around 8:30/9 that evening. One thing I have learned through the years is that I do not usually sleep well in the hospital, but I slept SO well Wednesday night that I felt like a whole other person the next morning. We do not know if that was the new medication, pure exhaustion, relief to be getting some help, or a combination of the three, but it felt great! I was started on a very low dose to gradually introduce my body to the medication and to monitor for side effects. Since I was doing well with it I was taken off of ICU status and was given a bit more freedom to move around on my own. 

On Wednesday I did a six minute walk test to measure endurance before staring the medication. I was only able to go 232 meters and my O2 dropped to 68% (normal for normal people is 97-100%). I repeated the test on Thursday morning and still only went 232 meters but my O2 only dropped to 73%, a slight improvement. We let the medication flow and monitored how I was feeling for a few more days and increased the dose on Sunday. Though I was still feeling better than when I came into the hospital, I didn’t have quite as much energy as I did on Thursday and Friday. On Friday I was so excited to have some energy that I overdid it with three (short-ish) walks around the unit AND a shower. Turns out when everyone knows you will be here for an undetermined amount of time they are happy to let you shower every few days, and that feels amazing!

The dose increase on Sunday felt about the same as the lower dose at first and performed slightly worse, endurance wise since I was only able to walk 173 meters on a six minute walk test. On the bright side, my O2 only went down to 76%. We did the walk tests for fun to see if there would be any differences endurance wise since this medication increases the squeeze of the heart rather than fixing the direction oxygenated blood flows. Though it is still questionable whether Milrinone has increased my endurance (I am able to take 2 walks per day. sometimes o2 stays to the mid to upper 70s, other times I see 67 s who knows?) it has definitely increased my energy levels. My low energy days here at the hospital feel about the same or better than my higher energy days at home. Instead of hitting an energy wall (where I am out and useless) around 1 or 2, I can make it to 3:30 or 4 and many days I am able to rebound a bit and have energy in the evening. I’ll take two extra hours of energy and day!

Another exciting thing Milrinone and this admission provided was a bump up in listing status. As of Tuesday afternoon (2/16) I have been moved from status 4 on the transplant list to status 3. this will hopefully shorten the wait a bit and it means I will be staying here at TCH until I get a new heart. 

My mom likes to come back and forth to the hospital s she can sleep in a real bed and get work done at my condo, but since we knew the winter storm was coming she came on Sunday to hunker down with me for a while. once we figured the Milrinone was providing some relief I had a PICC line placed on Tuesday morning. This is a central line that goes from my arm to my heart as a more permanent and direct line for medication and lab work, it eliminates multiple needle sticks over time. it was cold, roads were frozen and staff had started staying the night at the hospital, but that was nothing compared to what went down the next two days. 

On Wednesday morning just after midnight, Texas children’s lost water, it did not come back until midday Thursday. Then Thursday morning the hospital lost power and the essentials like monitors and other health machines were switched to generator power for about two hours so the Texas Medical Center could get it grid back up and working. My condo ended up faring the storm well with only spotty internet. My parents house in North Texas never lost power but did completely lose water for two days and is still having issues getting water fully back. Many Texans had it MUCH worse than we did and most of the state is still on a water boil oder and we have no idea when that will be over.

I know this is a long post, thank you for making it this far. I just wanted to fill everyone in what has been going on, everything is moving forward. All in all it was definitely the right time to come into the hospital so that I could gain more energy and spend it on thing I want like classes and virtual hangouts with friends. We also have discovered during this stay that I actually do have some moderate to severe refluxx that we can now play around with medications to see what works and that I am having way more pre-ventricular contractions than we thought that aren’t dangerous now, but probably best to be monitored closely. 

Anyways, this has been your 350 days/1 year update Ill keep you posted as thing progress. Hopefully this wait will not be much longer.

-LH

300 Days (on day 320)

Day 300 fell on December 20th. Since I had just finished my first semester of grad school on the 17th and got some crappy news along with big decisions to start to considering given to me on the 18th, I REALLY needed a break from everything.

On December 20th I get go down to Galveston Beach with my mom and brother. We checked into our rental house for the week, decorated, put stuff away, and hung out. My dad and other brother came down the next day. Christmas week at the beach was amazing! We rode the ferry, drove around town, took walks on the beach, read some books, I took naps every day, we cooked, watched movies, and really had zero plans. The weather was perfect for Christmas at the beach. Kind of warm in the afternoon and chilly in the evening, perfect short and sweatshirt weather, my absolute favorite. Any beach has always been my place of relaxation, peace, and slow down. Salty air always works magic. The peace and slowdown was much needed and the magic that happened this time is that I came home and actually felt slightly less tired and fatigued for a week or so. It was so nice to feel even slightly better for a while.

The Monday after Christmas I got a call from my cardiologist to further discuss the next steps she called to tell me about the Friday before Christmas. As you read in the “Day 250” and “Day 200” posts, my transplant team and I spent most of last semester getting my body ready and gathering as much data as possible to submit an appeal to UNOS to have me bumped up from status 4 to status 3. We always knew it was not going to be a given, but after a week of my team pouring over exemption information, and talking with their colleagues who are more experienced in adult transplant listings, my team was unable to submit and appeal that would be accepted. The only way to be moved to status three is to be inpatient or on some sort of heart pump. My cardiologist sounded upset when she told me this and knew that I was bummed as well so she told me to start considering if I would be willing to be admitted to finish the wait, but more importantly, enjoy the week at the beach while she has more serious conversations with the whole team to figure out what our next options could be. I was frustrated about the circumstances but enjoyed the holiday anyway. The Monday after Christmas my doctor called me back and told me that whenever I am ready, the team recommends that I be admitted and try a new continuous IV medication called Milrinone, which helps the heart muscle contract and relax better. Though my main problem is oxygen desaturation, the team thinks if we get my heart pumping better we may be able to increase oxygenation (not much, but I’ll take anything) and decrease the constant fatigue that I have been having for a while now that has only been getting worse. We are not sure if this medication will work, but it definitely could. Once admitted, I would likely remain in the hospital until I receive my transplant. Being inpatient during covid is not ideal given my parents will be my only allowed visitors (at least that is what the rules are now), but being admitted and put on Milrinone will bump me up at least one status which will decrease the wait a bit. Being admitted will also allow my body to potentially get the help that I’m feeling it needs most days.

When an organ is donated, the donor team therms all kinds of tests on the donor, sends it to UNOS who enters it into an algorithm. The algorithm then ranks the top 25-30 (I don’t actually know how many) recipients and sends out offers to those recipient’s programs. On a more positive note, My doctor told me she has been receiving a few offers lately that I have been on, I’m low on the offers, but at least I am on the offers. This leads us to cautiously hope that admitting me would move me up on these offers. My transplant team says they are ready to go whenever I am. I go see the team on January 25th where I am sure we will have more in-depth conversations on this, I also have a few more appointments and receive my second dose of the covid vaccine during the first week of February. I am hoping to get through these appointments then more seriously consider going into the hospital for a while.

Thankfully, my school at UTHealth decided to do another semester of fully remote classes meaning I can take them wherever I am, aka I’ll have some entertainment whenever I do decide to be admitted. I decided to take two classes this semester, instead of three because I have a good feeling about transplant this semester. Last semester I ended up with A’s in all three courses and fell in love with epidemiological study designs and the beauty of biostatistics. I know many do not enjoy statistics, but I think it is really neat in that it is used to make sense of massive amounts of data and can be used to predict the unknown within certain parameters. To me statistics is beautiful because the unknown is inevitable, there will always be something we don’t know, but using statistical tests on a set of numbers gives us some insight into the unknown without truly knowing. Anyways, I am excited to take biostatistics 2 and epidemiology 3 this semester to continue exploring these new-ish found interests. I am also going to be getting involved in research again! After a summer and full semester not doing research I am SO ready. I will be working with my epi 1 professor from last semester working on molecular genetics, specifically acute heart failure metabolites and biomarkers. I am excited to learn this semester.

Since we are almost halfway to day 350 and 1 year is right around the corner, I will post another update on the 1 year mark on February 24th, unless something important happens.

-LH

250 Days

The scariest thing this Halloween 2020 is how many people are on organ transplant lists and how long the wait can be. Be sure to register to become an organ donor if you have not already.

In reality, if you are reading this you most likely registered to be on organ donor a long time ago. Thank you for that.

Another part of reality is that I knew this wait for a transplant would be a long one. When I got listed, I told myself I would not get my hopes up for 18 months after being listed. We have until August 2021 until we reach that 18 month mark. This wait of a lifetime is starting to feel long, especially on the days I either don’t have much energy from the time I wake up or the days I hit the energy wall at 1 or 2 PM and don’t feel like I can do anything else.

I didn’t mean to start this post off on a low note, but sometimes, that is life. With the lows, come the highs of which there have been many in the past 50 days as well.

in the “200 days” post I talked about the terrible 6 minute walk test and possibly not needing a heart cath for my doctors to put together an appeal to UNOS (United Network of Organ Sharing) to get me bumped from status 4 to status 3.

The following week, once all the doctors, surgeons, and coordinators were able to meet they decided in order to make my appeal stronger, we should do a heart catheterization to see if pressure or flow differences could be part of the reason I have declined so much this year. Most of you saw the picture of me doing biostats homework while waiting for a delayed cath, so you already knew it happened. Compared to my heart cath five years ago, everything pretty much looked the same. Great news for my body, but it doesn’t help explain why it takes me 30-40 minutes to take a 0.7 mile walk that causes my O2 saturations to drop into the 60s and 50s multiple times, it also does not add to the strength of our status appeal.

During the past 50 days I went back to the hepatologist (liver doctor) for a 6 month followup, 2 months late (thanks, covid). The last time I saw this doctor, in January, he said all my bloodwork looked great and he would look at the ultrasound I was going to have the next day and let me know if they saw anything concerning. Eight months later he walks into the room saying my liver looked fine but my spleen was enlarged and I needed an MRI to rule out liver involvement. Hw then went on to explain how most transplant patients end up having to have a biopsy if anything shows up on the MRI. The heart cath was not scheduled then, so we thought we could schedule it all together, if needed. a few days before the MRI I got a call to schedule the heart cath for the following Tuesday. (can we take a moment to appreciate how quick things can move when you need them to) I went in for the MRI at St. Luke’s, got the IV placed and everything when they decided they would not do it because they did not have and could not find enough information about some metal abutments I have to help hold on a prosthesis.

I call the liver people the next day to see if I can have a CT instead. they said “sure” so I was able to get that scheduled for he Friday after the cath. You can tell the timeline is screwed up for the potential biopsy and cath combo.

The heart cath went really well. I spent one night in the hospital since I had a vessel occluded that was shuttling blood the wrong way. I go for the CT that Friday and on the following Monday I get a message from the liver team saying the CT scan showed that my spleen was normal but the surface of my liver was nodular and that I would definitely need a biopsy as a transplant patient (but was not enough for a biopsy in a normal person).

Obviously this was frustrating, I had JUST had a cath. When I asked if there was anything else we could do instead of another surgery, they said no and that we needed to get on it ASAP. I returned with a “let’s hit the pause button,” and then messaged my transplant coordinator to see if they knew what the heck was going on. She had no idea, but told me they would figure it out. When my cardiologist talked to the liver doctor she found out that he was not worried about needing a liver transplant as well as heart, and he was not even too concerned that this is advanced fibrosis, he just wanted to follow protocols and be extra cautious. Thankfully my cardiologist was able to convince him that we could do an MRI at Texas Children’s to clarify the confusion between the ultrasound and CT scan, then go from there. So now I have an abdominal ultrasound on Nov. 12. If this MRI does show some sort of fibrosis we will see if we need to do anything about it, but it will also help a status appeal because other organs are being impacted more by my low o2 saturations.

If this was not enough (when is it ever?), I also went trough a lot of phone tag to get an appointment and meet with a craniofacial plastic surgeon to see if anything could be done to decrease my constant-year-round congestion, sleep apnea, and increase my ability to breathe through my nose. I went in expecting nothing, but learned that I could have my pharyngeal flap (a surgery I had when I was very young to make my speech better that over time has grown to block my nose to throat pathway almost entirely) taken down relatively quickly and easily. That surgery is happening this Thursday, November 5th. Since this was originally done to improve my speech, I could sound a bit more nasally in a few moths after I have completely healed. Most cases of these flap takedowns do not show much, if any speech changes though, so we shall see what happens. It will be nice to be able to breathe out of my nose again though. LOL!

If you got lost in this timeline, don’t worry, I almost did too and I was the one living it! All of this happened in 3 -ish weeks. The upcoming 1.5 weeks have a sleep study, pre- and post op appointments, a surgery, an MRI, one midterm, and three homework assignments due…

In health summary, I am still listed at status four on the heart transplant list and not going anywhere quickly. There’s been a lot of drama trying to get people to communicate and for me to schedule appointments at a children’s hospital as an adult. There was a heart cath that went well but will not make our eventual appeal stronger. I am having a surgery this week to hopefully make things a little better and an MRI next week to clarify liver issues. As it has been from the very beginning, this journey has involved many bouts of the ‘hurry up and wait’ principal.

Somehow, through all of this, I have only truly missed 2 classes. I have attended 1.5 classes in the hospital, and have been able to keep up with the homework, projects, and exams. I wouldn’t say I am killing the curves, like I often did in undergrad, but I am just happy that I am able to stay in that upper tail of the class distributions with all of this going on.

I am really really loving my epidemiology and biostatistics classes. I love when numbers make complex topics make sense, it is so satisfying! I have one more midterm, two finals, and a few more projects and homework before this first semester of grad school is over. <– that blows my mind! Next semester I am planning to take epi 2, biostats 2, and either another core course or jump into a genetics class. Either way, I am excited to keep learning about public health and health/medical research.

To end on a good note, I was finally able to renew my license, ordered new glasses, had my grandparents come visit, have my mom here with me during that insane three week stretch, got an A on my first epidemiology midterm, find some good local restaurants for takeout, and watch many movies and lots of football!

Happy Halloween, friends

-Lorrie

200 Days

It has been 50 days since I have written to you guys so here is the next “50 day update.

Procrastination is often the name of the game for these posts. If you think I write these posts for days before posting, you would not be correct. The relationship between me and writing is often one of “pressure makes diamonds.” I really try not to procrastinate but often times we end up in this place where it is the day I need to post something and I sit down at the computer at 4 PM. All of that to say, I slammed into my “energy wall” about to hours ago (2 PM) so if the following does not go as smoothly as what you normally see from me, that’s why.

I would like to start by acknowledging that this is being posted on 9/11 and it is very important to remember the significance of this day each year, but I will not be talking about that here. If you want to hear 9/11 stories and memorials take a scroll through social media or the TV channels. If you want something to provoke thought on the subject, go to Netflix and watch s3e0: “Isaac and Ishmael” of The West Wing. this episode will take you on a deep dive of terrorism and radicalism.

I do think it is important to highlight the empathy, unity, courage, and strength event like 9/11 instill in us, and carry these traits over into our everyday lives. Especially in the year 2020.

Since I do not have the energy or brain power to take a deep dive into a topic like I usually do in these, I will start with health updates and finish the post off with school updates.

Last time I mentioned that some days are better than other, which is still very true, and that I would need a 6 minute walk test (6MWT), a holter monitor, and a heart catheterization to gather mor data so my team could put together an appeal to UNOS to bump me up from status 4 to status 3.

Two weeks ago, on August 31st, I went for a transplant clinic day where I got blood drawn (only 3 tubes this time!), did a 6MWT, and met with one of the cardiologists.

This 6 minute walk was kind of awful, not going to lie. The purpose of the test is to see how far you can walk in six minutes, you can stop and rest but the time keeps going. For me, they only tested how my heart rate and oxygen saturations responded to the physical activity. With normal physiology, you should have O2 saturations 97-100% and they should not drop or vary much unless you are doing extremely strenuous activity. My normal-resting saturation are 80-84%. during the 6MWT my sats ranged from 63% to 85%(at the very beginning). This seems drastic, and it is, but compared to my 6MWT last December, my O2 only dropped 2 points, which isn’t too significant. The significant part is that I was only able to walk 322 meters, which was 100m less than December. That is quite the change. For those of us metrically challenged, that is about 81% the way around a track or 352 yards (3.5 football fields goal line to goal line). 100 meters is about 109 yards I could not walk this time.

With this new data and wanting to avoid any surgery possible, my transplant team thinks they can get an appeal approved without a catheterization. They started the appeal process this week and hopefully it will be approved without a cath soon. If/when I do get moved to status three, it will most likely shorten the wait a bit since there are far fewer people in statues 3, 2 and 1 than in status 4 and above. If you love looking through a playing with data like I do, all of the de-identified transplant data is in public domain and can be found here –> https://optn.transplant.hrsa.gov/data/view-data-reports/

Before going to clinic on the 31st I had my first graduate school class, Biostatistics for Public Health. All of my classes are going great so far. they are very interesting and look like they will challenge ma a little, which I love. I have already submitted two homework assignments and taken two quizzes and it is only week two. I was very ready to get back to classes and having things to do after the very long extended summer (March through August), I am so thankful to be back in the thick of it. Learning and nerding out are my favorites! For those interested, I am taking Epidemiology I, Biostatistics 1, and Intro to Qualitative Research.

I am playing this semester by ear, telling my professors there is a chance I may go MIA towards the middle to end of the semester were interesting conversations to have, but they were all supportive and told me to let them know what they can do to help, so that was a great.

150 Days

We have hit 150 days on the heart transplant list, friends. While it has been quite the journey so far, it also just feels like I’m moving on through life. Rolling forward is the only thing anyone can really do.

Not a whole lot has happened since I updated you guys 50 days ago. We are still in the middle of a global pandemic which means I am only leaving my apartment sparingly. So far I have been to five, I repeat, FIVE, places since March 12th. I have been to the post office, Ikea, Target, Buc’ee’s, and Kitty’s Purple Cow. I am longing for the days where I can just go wander HEB or Target, or maybe go to the Galleria for funsies. I have not been out in public because I am terrified of the virus. I have stayed inside because science has shown that yes, there is a virus out there. This virus has been shown to cause negative outcomes disproportionately for people with cardiovascular diseases, diabetes, a compromised immune system, and people over sixty years of age. Since I fit into not one, but two of these categories, I am choosing to look at data and listen to medical researchers and experts and make an informed decision on whether I should stay home or not. I know hat if I were to catch this virus, there is a higher likelihood that it would not go super well for me, therefore I have chosen to stay home while living in a city where cases are not under control.

Today’s subtopic, if you will, is going to be the process of science, otherwise known as the scientific method.

One thing that I have found troubling lately is the public and media calling scientists flip-floppers or untrustworthy because they were wrong at first and changed their mind.

I personally believe this is the beauty of science. You gather data, analyze it, and make a recommendation. When you get more data you combine it with the existing data. When the combined data paints a different picture, you change your recommendation. Science encourages us to keep asking questions and gathering data to push thought forward.

Alright, let’s take it back to elementary school. What is the scientific method? It is an order of steps to take to ask a question and gather the information needed to think through and solve a question, if possible.

1.) First you ask a question. 2.) You do some research, find out what history and prior investigations have discovered. 3.) Create a hypothesis. What do you think the answer will be? 4.) Determine what kind of data you need to gather and figure out what kind of experiment or data processing you will need to hopefully answer your question. Remember to be sure your experiment has the possibility to disprove your hypothesis! 5.) do the experiment and/or gather all your data, be sure to note your observations! 6.) Analyze your data. What patterns do you see or not see? 7.) Think through your analyzes, do they support your hypothesis? If not, why not? 8.) Report what you have found.

The neat thing about this scientific method is it can be simplified or advanced depending on the problem at hand. If the problem you are solving is non-scientific, this method can still be used. If we are being honest, going through this process is how I have made almost every single big decision in life. From what universities I have wanted to attend to where to live. From deciding what kinds of indoor plants I am least likely to kill to what kind of furniture I should buy. From deciding on whether a walk is going to be better for my mental health than it will be for my energy levels to deciding I was ready to take on transplant. I research the heck out of everything, think about my past experiences, think through how it would work like I want it to and how it would not, I put all that together to form the decision I make.

I am sure you have used this methodology to make many decisions in your own life as well. You may have not known it had a name or an outline but I bet you have gone through this train of thought.

The cool thing about this thought method or research method is that as you gather more data points, more information, and more experiences you can update your decision. you can “change” your mind. During this pandemic this is what medical researchers have been going through. they can only make conclusions on what history of other viruses and data they have. With case data being thrown at them every which way from every direction, they have always had quite a bit of data to work with. That being said, the amount of data they have now is exponentially more than the data society was asking them to make predictions with in March. Many of the doctors and scientists on the front lines have changed and evolved their thinking, predictions, and recommendations as they recieve and analyze new and more data.

Science and medicine are a practice, always changing, never stopping.

Another group using this method to figure out what to do next is my transplant team in conjunction with myself and my family.

As I have said before, there is not much else we can do to increase my energy levels and abilities, except transplant. Currently I am listed at status 4 of 6 active statuses. Theoretically, I could be called at anytime, but realistically, it is going to be a long wait. How have we made this prediction? My blood and tissue type is O+. Type O blood is great to have when you donate blood because anyone can accept Type O blood. The problem with being type O while being on a recipient waiting list is that anyone can receive a type O organ, and type O recipients can only receive type O organs. With being O+, I can accept O+ and O- organs so I guess it widens options a little more. The gist is, when a type O+/- donor comes along, those gifts of life can go to so many different people, making the wait time for type O recipients longer. There are also many other factors that go into this, but this is one of the main factors.

While waiting it out, I keep finding myself losing more and more energy. when we change up doses of my current medication I feel less fatigued for a week or two before it goes back to what it was before or even a little worse. Some days are definitely better than others. Some days I actually feel like if the pandemic was not a thing I could go run more than 1 or 2 errands or wander a mall. There are other days where I could be sitting on my couch working on my laptop and by 2 PM I feel like I have had a full day of classes and walking around Texas A&M, it’s kind of a wild feeling.

At this point we don’t have a ton of options except to wait. While the wait continues my doctors are trying to keep be as healthy and strong as possible so I can crush the future recovery. Right now we are running out of options to do this as well. there is a medication we have talked about that could theoretically help, but at this time the team doesn’t think the theoretical, unproven benefits outweigh the risks, so we are going to continue tabling it. Instead, I will be going in for a heart catheterization soon-ish(?) to measure pressures, flow rates, and internal O2 levels. Heart caths are relatively minor procedures. I had my last one the Friday of my Freshman year spring break and was back in class on Monday. At my next appointment, on the first day of grad school (lol, of course) I will do another 6-minute walk test and have another holter monitor placed, all to gather more data. This data will hopefully help us put together an appeal to have me bumped up from status 4 to status 3.

In order to be automatically moved up to status 3 you have to meet the typical heart failure criteria of being on IV medication or a Ventricular Assist Device (VAD). I am obviously not on any of these, and at this point none of them would help my problem of poor oxygenation anyway. Because of this, my doctors will have to assess the data and see if they can put together a report that would convince the United Network of Organ Sharing (UNOS) to bump me up. Since I am listed at a children’s hospital they do very few adult transplants (I am 1 of 2 adults currently listed there) and are not quite sure how or if the appeal process will work, but we are all willing to give it a try. If we appeal and if it gets approved it will most likely shorten the wait a bit.

In lighter news. I start graduate classes on August 31st! I am SO excited to get back to class and structured learning. It has been a while! This semester I will be taking Epidemiology 1, Biostatistics 1, and Intro to Qualitative research. I am pumped to be entering the field of Public Health at such a pivotal, time for the field.

I hope everyone is doing well/ Remember to wear a mask while in public, social distance, and wash your hands. Stay safe everyone. Ill see ya at day 200.

-Lorrie

100 days

To be completely honest I have been struggling to put thoughts together for this post this week. I have been having a difficult time figuring out what I want to talk about when there has been so much chaos and hurt that has boiled to the top of America’s social “pot” this past week. I normally try to write about a topic on these posts and tie it in with an update on myself. I am going to try to do that again, but it might just end up as an update alone.

***Update: I was able to keep with the normal post format. Enjoy the story of Vivien Thomas and my thoughts on our current social justice movement, then scroll to the bottom for a health update***

I and most adults and kids with more complicated congenital heart defects would not be here today without a black man. In fact, anyone who has had open-heart surgery can attribute it’s success to Vivien Thomas. Yes, you read that correctly.

Though history teaches us that Alfred Blalock was the pioneer of pediatric heart surgery, that is only half true. While working at Vanderbilt in the 1930’s Blalock found a laboratory assistant in the carpenter-turned-janitor, Vivien Thomas. Thomas quickly learned the lab techniques and research procedures to help Blalock study shock and kidney conditions. As Thomas proved himself, Blalock gave him more autonomy to carry out the research on his own. Though integral, this partnership remained lopsided as Thomas remained classified as a “janitor” for many years, even after following Blalock to carry on research at johns Hopkins.

While at Hopkins, working on a shunt to bypass a Coarctation of the Aorta, Blalock and Thomas were approached by Dr. Helen Taussig, a pediatric cardiologist that wanted to give her patients with Tetralogy of Fallot, or blue-baby syndrome, a fighting chance. These babies were blue due to a lack of oxygenated blood reaching the body, and Thomas came up with the idea to create a shunt from either the right or left subclavian artery to the corresponding pulmonary artery in order to send more blood to the lungs. In order to see if this shunt would work, Vivien Thomas spent countless hours trying to create the “blue-baby syndrome” in laboratory dogs, then he spent even more hours performing and perfecting this shunt procedure on around 200 dogs. When a child was in critical need of the operation, Thomas taught Blalock how to perform the surgery then created pediatric sized tools and clamps Blalock would need to perform the operation on an infant. On the day of the surgery in 1944, though Thomas was not allowed into the OR due to segregation, Blalock demanded Thomas be allowed in there to stand just behind to walk him through the procedure. Once Blalock became comfortable with, what was named the Blalock-Taussig (BT) shunt, he performed thousands of them on his own while Thomas was back in the lab collaborating with other surgeons on Blalock’s behalf to come up with the first bypass surgery and many other medical advancements. He also spent his time in the lab teaching new surgeons. Vivien Thomas made an extreme impact on medical advancements, especially in the field of cardiac surgery all without a college degree, which was difficult to achieve during this time in history due to the systemic racism of university systems that has still not been completely eradicated. After working at Johns Hopkins for 37 years, the university gave him an honorary doctorate and appointed him to the faculty of the medical school in 1976.

Vivien Thomas’ story is full of racism, breaking barriers, and convenient acceptance. In many ways, racism is not as overt today as it was through the mid-1900s. We do not have laws that directly say where black people can live work and play today, but the history between races has left a rift in our society. In a way, we have made big changes, but many times these changes have only patched the surface. This systemic racism is deep-seated and extremely complex. Since there is no single cause, there is no single answer. Complex problems require complex solutions.

Since many of my readers are white, we are part of the problem, whether you want to admit it or not. But, we can also be a big part of the solution. Systemic change is catalyzed by individual change. Purposely pay attention to the racial bias that history has taught us, and intentionally work to change that narrative. I have been working on this for many years, and I know, it’s not easy. Being white is comfortable, and that is okay, but we should not be okay with how uncomfortable our fellow black and brown citizens are. We can also individually fight for our fellow citizens with our dollars and with our ballots. If you want, donate to black activism groups. If you do not want to touch the protests, for some reason, google your local black-owned restaurants and stores near you and choose to spend your money there. My last point on individual change is to vote in local and national elections. In this day and age, the people hold a lot of power but so do our elected officials and appointed-by-elected officials. Do your research then go to the polls, or mail in your ballots to choose to put people into office that want to make changes to create a more equitable, kind, and loving America.

Vivien Thomas, and under-recognized black man, advanced medicine so that I could have three heart surgeries and be on the heart transplant list for 100 days.

A lot has happened in this world and personally since February 24th, when I was listed and since April 16th, when I posted last. On the personal side, I turned in my internship binder, was notified I was the honor graduate, or top student, in my program, and graduated Cum Laude from Texas A&M. On the day of graduation, I went on a “car-entine” adventure to play mini golf with my roommate’s family. The day after graduation my parents came down to make 2 trips with two cars each to move me to my apartment in Houston. I’ve been living in Houston for about three and a half weeks now and I like it all so far. I enjoy walking the bayou trails and having everything imaginable nearby.

Health-wise things have been going okay. When living in College Station, the same walk around my complex was getting more and more difficult. Nothing crazy, just getting short of breath quicker and feeling more exhausted afterward. I had a transplant clinic appointment on May 21st. Can you believe they only took four vials of blood? I was shocked. that is a record as of late! Numerically, everything looks stable. to combat the shortness of breath we changed a once a day medication that we haven’t changed in years to twice a day to see if it would help the fatigue. It did the exact opposite. I felt like I was swimming through concrete by 2 pm the following week. I called my team and we changed it to half the dose twice a day. So far, so good! maybe I have a little more energy than before, but it is honestly really hard to tell.

Remember, 100 days of waiting seems like a lot, but we have got another 100-200+ before we can get our hopes up for a call. Obviously, it can come at any time, but realistically we still have a while.

For now, I’ll just keep moving forward, seeing how things play out. I’ve been doing a lot of reading, show and movie watching, painting, and brushing up on statistics for a biostats class I will be taking in the fall. If you have any book, show, or movie recommendations, send them my way!

Stay safe everyone!

-LH

P.S. If you want to watch a movie about Thomas and Blalock, go watch “Something The Lord Made,” on HBO. you can also find it in pieces on YouTube. Main Perk? it has Alan Rick Man and Mos Def, and is actually a really great movie!