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

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!

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.