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.

F3F8A98F-279D-4CA5-99EC-6FFD8AF6ABB9

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!

50 Days

I meant to write a post on 4/14/2020 to mark 50 active days on the transplant list, but I am writing this on day 51. What’s new? My faithful followers know I am not great at getting these posts out with any kind of regularity. Should I even try to post every 50 days? I’ll make it a goal, but who knows if it will happen.

I wrote to you last on March 12th, and boy, a lot has happened in the world since then. Currently, we are all still in our homes social distancing, helping the virus run out of people to infect, and flattening the curve to reduce a little bit of the stress on our medical system.

Spring break for Texas A&M was March 7th through the 15th. I got to go down to a family friend’s beach house in Galveston, TX with my roommates for a few days towards the end of the week. I got to see said family friends, see my brother, and relax with some of my best college friends. Over-all it was a great trip. We spent most of our time at the beach or on the porch of the house, but we did take extra cautions one night and went to Yaga’s on the strand because it is hard to go to Galveston and not visit the Strand district. While hanging out on the beach Friday with a group of my roommates, my brother and his crew (they came down because the rodeo got canceled on them), I got the email that A&M had extended their break and that all classes would be moved online. Around that same time, the governments started taking things seriously by encouraging social distancing and moving more and more schools and jobs to online platforms. It was all very surreal, being in a relaxing place, listening to waves crash while it looked like a microscopic virus was undoing the fabric of normalcy on an individual, societal, national, and global level.

We were planning to stay at the beach until Sunday, we decided to leave on Saturday since we were all slightly burnt and anxious to get back, to physically distance ourselves to keep us safe. That was March 14th, 32 days ago. Since then I have left my apartment complex about 7 times and have only gotten out of my car once, at a park.

For the love of humanity and your fellow citizens, I hope you all have similar stories to tell of staying home.

If you are young, healthy, and feel invincible and don’t know why you should be staying home. Stay home for me. Much of the rhetoric that came out of Asia and Italy said that just older people and people with underlying conditions are at a much higher risk of having complications if they contract the virus. In the U.S., and across the globe since then, we have seen that young adults DO get the virus and they CAN have complications. So, stay home for your parents, grandparents, friends like me, and for yourself.

Growing up, I went to my grandparent’s house every summer for a week or so. At some point during the week, I would run out of things to do and tell my grandmom that I was bored. She would often help me find something new to capture my attention, but each time she told me that intelligent people are never bored. That phrase has stuck with me to this day. Whether it is/has been real or perceived intelligence, I have rarely found myself being bored since then.

If you’ve been here for a while you might have picked up on the notions that I fight the fear of unknown and uncertainty with research, growth and gaining a deeper and multi-faceted understanding of the problems at hand. In other words, this global pandemic has sent me on a research frenzy, and I love it. I don’t love that this virus is infecting millions and killing hundreds of thousands, not to mention economies, ways of life, and societal norms. But, I mean, how cool is it to see the field you are devoting your life’s work to, that is normally humming along in the background unnoticed, to be suddenly thrust onto center stage around the world. It stinks that it takes a pandemic of the SARS-COV-2 virus to make the world more aware of hand hygiene, how crucial public health is, and how important epidemiologist are when it comes to predicting, tracking, modeling, mitigating risk, and helping drive recommendations and policies when they pertain to diseases, such as COVID-19.

Over the past weeks, I have filled my “boredom” time with research about the virus, and pandemic, as well as researching more about what I want to focus on and research in graduate school, which is chronic disease epi by the way. I have pieced together projects, papers, and internship site evaluations to put together an internship binder to turn in and complete my undergraduate career, next week. I have read, watched movies, gone on a daily walk around my apartment complex, started an easier 30-day yoga challenge, cooked a lot, and have watched quite a few movies. (if you are looking for some eclectic movie recommendations, hit me up! – from my roommate “I’ve never heard of most of these movies but they’re all really good.”) I have yet to find myself to be bored.

Health-wise things are going pretty steady. I think this slow-down has been good for my body. My body is still exhausted by the end of each day, but it has been nice to have a little more control over what I need to get done in a day and when I hit my “energy wall.” That being said, going to grad classes in the fall will be a welcomed event. I am ready to be back in a physical classroom and lab learning and studying.

Remember last time, when I said I would be seeing my transplant team every 4-8 weeks from there on out? Yeah, well… I was supposed to go see them on April 6th, but the Thursday before, we decided it would be safer for me to not come in for a while due to the virus. Thankfully, we have the leeway of stability to do that right now, so we rescheduled to see them and get some testing done on May 21st, about two weeks after I will have moved down there, so that’s convenient.

Before I sign off, for now, I want to let you know about one other thing I have been working on at home for the last few weeks. I have been editing automated transcripts for a podcast! I am a podcast junkie. You can ask my roomies, I bore them with the details of many of the podcasts I love to listen to. There’s a mom in the Congenital Heart Defect community named Anna, who started a podcast for the community years ago, to have guests on to share their experiences and talk about different topics and challenges that people in the community face. I have been a part of a few CHD community Facebook groups for a number of years because they are great resources for support. I met Anna in one of these groups and she asked me (a few times) if I would like to be on the pod because I have an interesting story to share that could heal others. I declined for a while, I was nervous to publicly share what I have been and am going through. Starting this blog two and a half years ago to give updates on my last surgery started to bring me “out of the closet” of my heart condition. Though this mainly just reaches family and close friends, it was an important first step. In September I started an Instagram account (@theheartofthejourney) to chronicle this journey to a heart transplant and invite those who wanted to follow along, on the journey. Earlier in March, I reached out to Anna and asked if I could help with the podcast at all and she said she had an automated transcription program, that needs someone to go in after and edit them to make sure they are accurate. I said, “teach me how, and I can do.” So far I have published transcriptions for 8 thirty-minute episodes, including my own!

Yep, you just read all of that to learn I said yes to being on a podcast and sharing my story of how my heart impacted my childhood and what lead me to be listed for a transplant. Anyway, if you want to check it out go look up “Heart to Heart with Anna,” on your favorite podcast app and look for the episode called “Waiting for a Heart.” Its a little cringy, but I think I told my story the way I wanted it told, aka, get ready for an anotomy lesson!

As always, don’t forget to become an organ donor and make your wishes known! (Especially since April is Donate Life Month!)

-LH

P.S. If you would like to receive a graduation announcement from me even though the physical graduation was canceled), please email your address to leh621@yahoo.com

P.P.S. Here is the link to listen to my podcast episode if you do not know how podcast apps work. https://www.spreaker.com/user/heart2heartannaandfriends/waiting-for-a-heart

 

 

Listed!

Wow! I am terrible at updating my blog. So bad, I have to go back and read my last post to remember what I have told you guys and what I haven’t. I will try to be better, but if we are honest, it probably won’t get too much better! HAHA!2F632DEC-3845-4B2D-BB06-34C728BA6C72

If you are not following me on Facebook or Instagram, or just missed it: I got Listed for a heart transplant on February 24th, 2020!

Now we will take a quick step back.

It looks like I left you guys in December, after getting back from New York and celebrating the holidays. In that post, I talked about being accepted to an MPH program, apartment hunting during transplant evaluation, and how evaluation went. How I needed to see an adult congenital cardiologist and liver specialist before my transplant team would take my case to the Medical Review Board.

On January 19th I went down to Houston with my dad for the two specialists. After an ultrasound and meeting with the doctor, we learned my liver is pretty normal and should not have trouble with a transplant, which was awesome. Cardiologist appointments at TCH are typically 30 minutes, maybe 45 if there is a lot to discuss or you get off on tangents. I met with this adult congenital cardiologist for an hour and forty-five minutes! We started with a blank whiteboard and drew EVERYTHING out. we started with my general heart anatomy and its implications prenatally, when I was born, and as I have grown. We talked about all the surgeries and interventions I have had and how those made my heart function slightly more normally for a time. With that, we talked about my options now. the few options we have to medically manage my heart failure symptoms and potentially make me feel slightly better. At first, I thought the doctor was trying to talk us out of transplant, but he clarified that he thought going forward with transplant listing is probably the right move. But, while being listed, and especially once I move to Houston, my transplant team and I should think about trying new medications and maybe catheter procedures to try to increase the amount of blood that can flow to my lungs without increasing pulmonary pressure or tanking my blood pressure. In other words, there just are not any great or clear options that would make things significantly better. Which is why I am listed for a heart transplant.

After gathering and analyzing all the data on me, my transplant team presented my case to the Medical Review Board on February 7th. The large board unanimously agreed to list me! This was a HUGE step and a big relief!

My coordinator told me that she would send all the information to insurance and we should hear something by the following Wednesday, but that they could take up to 10 business days to approve. She said they normally approve it all quickly. When I hadn’t heard anything by Thursday, I messaged her to see if she had heard anything. She responded with a “no,” and “this is the longest I have ever seen insurance take, but one of your insurances technically takes between five and ten business days. I hope to get something soon.” on Friday she called me to inform me that insurance wanted to more letters from different doctors to approve. One of the docs could simply send in a letter, the second one wanted one more general test, so I set that up for the first thing the following Monday morning. Finally, on that Monday, the 24th, around 11 AM, I got a call from my coordinator that she had gotten approval from insurance and that she had just listed me. UNOS assigned me to status 4 on the list.  We’ll talk about statuses and how I understand the list to work in a minute.

Remember in December how I had mentioned a new arrhythmia I had developed and put on a beta-blocker? I was put on a pretty normal dose and it worked really well for a while. I have studied beta-blockers in some of my classes and I never truly believed they could lower hear rates and keep them from rising that well, but boy was I wrong. before the medication, my resting rate was in the 80s and 90s and would get up to the 110s and 120s with something as simple as walking. with that initial dose, I was lucky if my heart rate broke 100 while doing the exact same activities and my resting rate was in the low 60s. About two weeks ago I realized that I had been feeling extremely fatigued and tired by like 12:30/1PM ish to the point that I felt like it took so much effort to do the simplest things. I also noticed that whenever I was walking or being active, which increased my heart rate, then stopped, instead of my heart rate coming down slowly I felt it wanting to drop when my body wasn’t ready for it so it felt like there were some disorganized palpitations happening. I am not really quite sure how to explain the feeling but it was strange. After calling to report this and to see if I needed to come in sooner to get it checked out they told me to just half the dose and we would reevaluate when I can for an appointment on March 2nd. Thankfully I have felt better on the half dose, I’ve felt less fatigued and haven’t had any of those particular palpitations.

This past Sunday, March 1st, My parents and I went down to Houston to meet with a realtor to look at some condos and more apartments to see more options for living possibilities. we saw some really great places and think we have greatly narrowed down the area I should live in. let me know if you guys know anything about the Braeswood Place/Myerland area! On Monday, we saw one last apartment then went for bloodwork (12 tubes this time!) and met with the transplant team. Things are looking stable for now blood work-wise. We upped my dosage of diuretics to see if it helps with the exhaustion and fatigue, I cannot quite tell if it’s helping yet, but maybe? We kept the beta-blocker on the half dose for now, but they hooked me up with a 24 hr holter (wearable heart monitor) right before we left to make sure the dose adequately takes care of the atrial arrhythmia we are using it to treat. At this point, it seems like appointments everything 6 ish weeks will be used to adjust medication combinations and checking quantitative data, like bloodwork, echos, and 6-minute walk tests to try to maintain stability.

We also asked questions about listing and learned a little bit more. Get ready for a little education!

No, I do not have a number. No, I do not really know where I am on the list. No, I do not know how long it will take to receive the gift of a heart.

Okay, so the adult transplant list has 6 active statuses and a Status 7 that is “inactive.”

Status 1 = you need a heart, like yesterday. So most people listed as staus 1 are on life support. There are not too many people listed under this status.

Status 6 = you could benefit from a transplant, but it is not urgent. Status 6 is the “catch-all” of patients that do not fit into the higher statuses each with their own specifications.

Each status has a list, ranking people based on medical urgency and time spent on the transplant list. I was listed as Status 4 by UNOS because I am being listed due to a congenital heart defect (CHD), which is one of the specific listing criteria for the status. Moving up a status requires physical decline. So, of course, moving up statuses is a double-edged sword.

One of the reasons my team decided to list me now is that time accrued matters. If I spend 100 days on the list and physically decline enough to jump to status 3, I would be listed higher in that status than someone that got listed for the first time at the same time in status 3. For someone like me, it is probably better to wait on the list, than off the list.

Remember those 34 tubes of blood I had drawn in December? Most of those were to help my team type my heart tissue and immune system. another really important part of transplanting any organ is matching donated organs to recipient bodies that will more easily accept the organ. a recipient will never truly accept a donated organ, but the closer the tissue types, immune antibodies, and blood types match, the less of a fight the recipient’s body will put on to reject the donated organ. During transplant surgery, the recipient’s immune system is pretty much destroyed to make the introduction of the new organ easier. the recipient then takes anti-rejection/immunosuppression drugs for the rest of their life to keep their body from attacking the organ.

As I am writing this on day 12 on the list, I am stable. If everything remains the way it is, it will most likely take over a year to get the call. until then, I’m just going to keep living my life in the 1 hour (2 hours until I move to Houston) bubble around TCH. This will include finishing this internship, where I am learning more about dealing with difficult people and secretarial work than research, graduating in May, moving to Houston in May, hopefully doing a summer data mining research gig at TCH, and starting grad school in the fall.

So, yeah. This is where I am at now. Enjoy the (remaining) product of a celebratory photoshoot my roommates and I did in extreme wind and cold mist the Monday after being approved by the MRB!

As always, consider becoming an organ donor and be sure your family is aware of your wishes.

 

Moving Forward

Welcome to the new and improved website! I have changed the name, the theme, and the welcome message of this blog to better represent my life now since “the summer of 2017” has long passed. If you click the menu dropdown you can find posts organized by year or topic, for easier reading. I also created a new Instagram account, tagged at the top, of the same name where I’ll be posting more often as a way for me to educate and process through this journey.

I realize I haven’t written you guys in a while. I had to go back to the last post to figure out what I have told you since a lot has happened in the past six months.

It looks like the last thing I talked about was my initial meeting with the transplant team and I announced, after much deliberation, I was moving forward with the heart transplant process.

Shortly after the last post, I scheduled a three-day full transplant evaluation for December 9th – 11th. I kept going along with my day to day activities to complete my last semester of undergraduate classes until then.

The post before last, I wrote about discovering the field of public health epidemiology and how getting an MPH would allow me to have a career that intersects many of my passions. In the end, I applied to two programs, Texas A&M’s school of public health and UTHealth Houston’s school of public health. three weeks after all my application material was received I got accepted into UTHealth’s SPH, about a week ago I got into A&M’s program. It’s nice to feel wanted.

Though I love Texas A&M and all it has given me, UTHealth was my first choice because it has a much more established school of public health and an epidemiology track. Academic diversity is always a good thing. The coolest part of all is that it takes me back to Houston and allows me to take classes, literally, two and a half blocks from Texas Children’s Hospital, where I will hopefully be listed for a heart. Not many people would want to work towards a master’s degree while in heart failure and on a transplant list, but I am ready and excited to give it a try.

Transplant evaluation consisted of three very long days, hardly any time for lunch, and 34 vials of blood being drawn. The first day we met with Allergy and Immunology, and Infectious diseases to learn about post-transplant immunosuppression, make sure I was fully vaccinated and that those vaccines were up to date, and talk about the antibodies I have and don’t have that impact organ tissue matching. I then met with a psychologist and was scheduled for a two-hour neuro-psych evaluation to test my learning abilities. When we showed up to that last appointment, the doctor came out to tell us that since I am finishing a science-based undergrad degree and am already accepted to a STEM Master’s program, they know I am cognitively advanced and do not have trouble learning new things. HAHA!

The second day I saw Occupational and Physical therapists to evaluate my functional capacity. In October and the second day and evaluation I completed a six-minute walk test where you walk as fast and as far as you can in six minutes, you’re allowed to stop but are encouraged to keep going. In October I was able to walk about 1141 ft with zero stops with my oxygen levels bottoming out at 65 and staying in the upper 60s for most of the test, honestly, I was having a really good day that day and I was surprised by those results.  In December I only made it 1089 ft. I had to take to rests, my O2 levels bottomed out at 59 stayed in the mid to low 60s for most of the test. After those appointments, we headed to the heart center to have an EKG done, as well as a 24-hour holter monitor placed. We met with a surgeon and two of his PAs (one of them being an Aggie who had graduated from the exact same degree program as me!) then headed out for the day.

Day three consisted of an early morning echocardiogram, a two hour lower extremity ultrasound, meetings with social work, nutrition, and one of the transplant cardiologists. At the end of day three, we learned that everything is looking pretty good and they want to take my case to the Medical Review Board (MRB) as soon as they can. Before they can do that though, they want me to see and get plugged in with an adult congenital cardiologist since the one I love and have been seeing for a long time is a pediatric cardiologist while I am 23, lol. My transplant team also,  wants me to see a liver specialist to get scans to be sure my liver is good and will be able to handle a heart transplant.they mainly want to do this as a precaution because most single ventricle patients my age have had a series of three surgeries where the third surgery can cause liver fibrosis due to higher arterial pressures. I have only really been able to have two of those surgeries since I am one of a very few my age in this situation they don’t really know if the liver responds the same way. they want to be sure they look into it in case one of the 40 people on the review board asks about it.

Since I accepted my admissions offer to UTHealth in October, we went down to Houston early on the Sunday before to look at apartments and figure out the area I want to live in for grad school. we looked at about four complexes on Sunday and visited more throughout the week when we were done each day. On Monday night, we were able to visit our original Houston stomping grounds seeing our first two houses and eating dinner at Molina’s, one of our favorite Mexican restaurants. We also got to deliver Christmas popcorn to Dr. Kline in person.

Dr. Kline was the only pediatrician I had. His signing me out was the only way I was able to leave the hospital after I was born. Now, Dr. Kline is a die-hard UT Longhorn and, while proud, he has always given me so much crap about want to be, then becoming a Texas A&M Aggie. The smile on his face when I showed him my acceptance letter to UTHealth was absolutely priceless.

During the evaluation, we learned A LOT more about pre-, during, and post-transplant, it was quite a bit to take in but it definitely helped show me that this is the direction I should be going.

Two days after the three-day marathon I flew to New York to visit my aunt and do “Christmas in the City.” I’ve been to NYC many times before, so I’ve seen most of the big “Have to see’s,” so we were able to take it slow and easy and see the things we wanted to see in about a 6 block radius from Reckafellar plaza. We saw Come From Away ( which was SO SO good! See it if you get the chance), we experienced the magic of the Rockefeller tree and the Saks 5th light show and strolled down the festive buildings of 5th avenue. The trip as a whole was much enjoyed and very needed! Thank you, Aunt Lorrie!

when I got back I got a call about my Holter monitor results showing a new atrial arrhythmia. Thankfully it is nothing too crazy, but I have started a beta-blocker to help better control it. It is the first time I have had to start a new type of medication but so far so good!

Currently, I am still enjoying a fun and restful holiday with family and friends before I head back to College Station for one more semester. This semester I am doing an internship in the applied exercise physiology lab at Texas A&M where I will get to help manage and run cardiac stress and body composition testing and research along with helping teach students how to take blood pressures and set up and run EKGs. I am really excited to keep doing this clinical work I enjoy with professors I really look up to.

I update again when I get more info or after I get the results from the Medical Review Board. Until then, have a happy and healthy New Year!

-Lorrie

World Heart Day 2019

One easy way to prevent most cardiovascular diseases is to raise awareness about the disease, the treatments, and give people the tools to understand and minimize their risk factors. That is exactly what the goal of World Heart Day. In 2000, the World Heart Federation established this day of world-wide education and awareness to encourage people to take control of their heart health.

I have always had a deep interest in the cardiovascular system for obvious reasons. But, since coming to college Encouraging others to decrease their changeable risk factors and learning about the correlations between coronary artery disease and obesity has become my passion project.

On this 2019 World Heart Day, I thought I’d share with you the risk factors of cardiovascular diseases and some of the most common forms of heart disease. (I’ll also share some updates on my personal heart journey at the end.

Risk Factors:

Let’s start with the things you cannot change.

  • Being male – sorry guys, you are always going to be at a higher risk
  • Age – Men over 45 and women over 55 are more likely to develop cardiovascular diseases
  • Genetics – Some people just have a genetic predisposition to developing heart disease. This is why it is important to know and understand your family history. Just because heart disease runs in your family does not mean you are doomed, there are plenty of positive health behaviors that can negate genetic predisposition.

Now for the risk factors you do have control over!

  • Smoking and Tobacco use puts you at higher risk
  • High Blood Pressure is very common around the world, especially in 1st world countries. Healthy BP is 120/80. Despite the new guidelines that you need to start blood pressure medication if you are over 120/80, it has not been scientifically backed up that taking medication helps in the long term, unless blood pressure is over 140/90
  • High cholesterol: while both cholesterol levels and blood pressure have genetic components, a healthy diet and adequate physical activity can help improve these.
    • Total cholesterol: aim to keep total cholesterol levels below 200 mg
    • LDL: This is considered the “bad” cholesterol that should be aimed to be kept below 130 mg
    • HDL: This is the “good” cholesterol that is sent to your liver for processing rather than to the peripheral vessels. you want HDL to be OVER 35 mg
  • Diabetes, especially the type 2 variety is a risk factor
  • Physical inactivity – our ever-evolving sedentary lifestyles have increased our collective risk for cardiovascular disease. We can fight this risk by participating in at least 30 minutes of exercise a minimum of 3 days a week, with more physical activity. This is easy to accomplish by simply going for a half-hour walk each evening. I till help you clear your head and fight heart disease.
  • Obesity – a Body Mass Index (BMI) of over 30 increases your risk of developing heart disease.
  • Diet – eating a balanced diet of whole grains, fruits, vegetables, and lean protein in moderation decreases risk for obesity, hypertension, high cholesterol, and obesity.

Heart Diseases:

  • Atherosclerosis/Coronary Artery Disease: CAD is the most common acquired heart disease. It occurs over the years where fatty deposits accumulate in the coronary arteries forming plaques that can rupture or grow too big and cause a heart attack. This is not just a disease for the old, atherosclerotic plaques have been found in American teenagers. this disease can be prevented, delayed, and helped by healthy lifestyle choices like physical activity and a healthy diet.
  • Arteriosclerosis: the hardening of arteries that occurs mainly with age.  this hardening decreases the elasticity and pumping ability of the arteries that direct blood around the body.
  • Cardiomyopathies: This class of diseases is the development of a malformed (thickened or thinned heart walls) and malfunctioning heart muscle. Cardiomyopathy can happen after an infection, drug use, pregnancy complications, or a whole host of other things.
  • Congenital Heart Defects: This form is what has impacted me. Congenital heart defects can range from a small hole in the septum between cambers to complete missing ventricles and everything in between. these cannot be prevented.
  • Endocarditis: an infection of the heart muscle.
  • Heart valve insufficiencies: these often occur as a result of high blood pressure that slowly wears out the valve causing it not to fully close and send blood where it needs to go.
  • Rheumatic Heart diseases: this is a more common problem in third world countries where people infected with rheumatic fever cannot get the treatment they need at the time they need it, allowing the virus to move to and attack the heart, especially the valves.

In summation, be sure to visit your doctor often to monitor your blood pressure and cholesterol. Know your family history. Do not smoke, use tobacco or other illicit drugs. Eat from every food group in a balanced and moderate way, and stay as physically active as you can.

Happy World Heart Day! Remember to take care of yourself.

Lorrie Update:

The last time I posted, I had just scheduled the “new heart transplant” appointment for September 19th, and had a lot of unanswered questions. If you recall, three of the big questions I had in the last post were; Is it time to move forward with transplant? Can I stay at Texas Children’s? and could I be a candidate?

When we went in for the appointment I had some preliminary blood work, received a 92-page transplant “bible,” and an appointment with a transplant cardiologist. The doctor that saw me that day is apparently besties with the cardiologist I’ve had since I was 8, so we think Dr. Ayres worked some magic for our initial appointment. The sheer amount of information my mom, dad, and I were presented with made it feel like we were drinking from a fire hose. It was a lot, and it is also all in the 92-page book. We learned that yes, it is time to move forward with transplant if it is something I want to do. Yes, I can stay at TCH since my anatomy is really strange, but if/when I get a transplant I will probably be transitioned to an adult program about a year after. Finally, as long as something surprising doesn’t show up during the full evaluation I could be a candidate. Now that I am “a part of” the transplant program I will be going for appointments every six to eight weeks in order to be closely monitored, meaning I’ll be back at TCH on Halloween.

I really appreciated that they would not allow me to say “yes” to moving forward with the transplant process until I had gone home and thought about, talked to loved ones, and processed all the information for a week or more before moving forward. The week after the appointment I talked through all the positives and negatives of transplant with my parents, aunt, brothers, grandparents, close friends, mentors, a friend who has had a transplant, and a professor whose grandson had a double lung transplant in August. After many deep conversations some emotional, some logistical, and many of both, I knew I was truly ready to take on the journey after I was able to cry about the positives and negatives of it all. I know a decision is solid and known when I am able to process the emotions of it all.

Last Friday I called my coordinator to officially start the process and to schedule a three-day full evaluation in early December.