I started having health issues when I was in 8th grade in 2006 (about 12-years-old). My cholesterol was sky high. I was gaining weight. No one could figure out why I was having these issues. It wasn't until 2008, when I was 16-years-old, starting my junior year of high school, that my doctors figured out what was going on.
I had gone on a trip to Charleston, South Carolina. On the night before we were leaving to come back home, I noticed my right foot was swollen. I thought that was odd. By the time I got back home the next day, both of my feet and entire legs were swollen. I remember the first week of my junior year, I had a difficult time walking around school because my feet barely fit into my shoes.
I was seeing a sleep doctor at the time because I had a horrible time sleeping. I had a follow up appointment with him. When my mom took me to the appointment, and he saw my legs, he said there might be something wrong with my kidneys. He said he would call a nephrologist he knew. When he came back into the room, he told me they wanted me to go to Tampa General Hospital so they could do some tests.
When I was there they did a kidney biopsy. From this biopsy it was determined that I had a kidney disease called Focal Segmental Glomerulosclerosis (FSGS). It is an autoimmune disease that specifically attacks the kidneys. The cause is unknown.
I was on an IV drip to help shed some of the water retention that my body was holding. I also started steroid medication to help slow the rate of kidney damage. This caused me to gain a lot of weight. My hemoglobin was low, so I had to inject myself once a week.
June 2014-just finished junior year of college, first week of dialysis
Aug. 2008-junior year of high school, diagnosed with FSGS
From the age of 16 to the age of 22, this was my health regimen. In March 2014, a few days before I was going on Spring Break, my pediatric nephrologist (yes I was still with pediatric because Dr. Valerie Panzarino was awesome, and I didn't want to leave her) called me and told me that my bloodwork wasn't looking good and that I would probably be on dialysis by the summer. I really had no idea what dialysis was, so when she said this, it really didn't phase me.
She wanted me to see me in clinic. The first thing I said was, "But aren't you on vacation?" I really had no idea the seriousness of the situation. She told me me she would make an exception. She I was not a pediatric, I had to start seeing an adult nephrologist so they could be the one to follow me while I was on dialysis. Dr. Panzarino described some of the nephrologist she knew. I went with the "sarcastic and witty" nephrologist who turned out to be Dr. Samuel Weinstein.
In June 2014, at the age of 22, I went into kidney failure and started dialysis at TGH. I had a port (permcath) placed in my chest. This port hooked up to a dialysis machine that for three hours that cleaned my blood, removed the toxins that my body could no longer do by itself, and removed fluid that I had gained. Not long after I started was I no longer able to urinate.
Dialysis was three days a week for about three hours each time. I chose the Tuesday, Thursday, Saturday shift at 5:45 am. I was still in college, so I chose that time so that I would still be able to do the things I needed to do. I would be done about 8:30 am. From Davita, I would either drive to my classes at The University of South Florida or my internship, then go to work, and then go to my acting classes.
Emmanuel means "God is with us"
Emmanuel was born February 15, 2011 with craniofacial anomalies (CFA). It is a condition that affects the way in which the skull and face grow, but does not affect the mental state of mind. Children born with this condition often aren't meant to live to adulthood.
After over 20 surgeries in his little life, Emmanuel went into a coma December 5, 2016. He had one surgery that day, and he woke up and was all good to go for his next one. When he went under anesthesia for the second time, he did not wake up. He was put on life support for about a week before the family was told that he was probably never going to come out of a coma.
One of my mother's good friends, Catalina, who I have known since I was 5-years-old, was there with Emmanuel's family when LifeLink asked them if they wanted to donate Emmanuel's organs. They agreed to do that. Catalina told the family she had a friend who's daughter was in need of a kidney. The Gutierrez family informed LifeLink they wanted me to be the one to receive Emmanuel's kidney.
June 24, 2016-Day 7
LifeLink checked my records and let the Gutierrez family know that I was inactive on the transplant list, and therefore could not receive a transplant, even though it would've been a direct donation. This was true. I had everything checked off except a psych evaluation.
Unfortunately this was all happening on a Sunday, so I had to wait until the next day to call my transplant coordinator. Monday rolled around, and I got to work. I first spoke with my transplant coordinator. She reiterated that I still needed the psych evaluation, and she never received a call about a direct donation. I asked her who I needed to speak to so I could let them know the Gutierrez family wanted me to have Emmanuel's kidney. My transplant coordinator provided me the number for LifeLink.
I gave LifeLink a call. I told them I didn't have much information, but there is a family who wanted to directly donate to me. I gave the woman on the phone my information as well as Emmanuel's name. That was all I had to go on. I told her that this was very time sensitive because I know other patients were already being called to come in and test to see if they were a match for Emmanuel's organ.
The woman gave me a call back around 4:30 pm. I was almost at work and pulled into a parking lot so I could speak with her. I was very nervous about what she was going to say. She let me know that other people were being called in to see if they were a match, and although the Gutierrez family did want me to be the recipient, I was inactive on the transplant list due to the one and only sole fact that I did not have a psych evaluation done. She let me know that we could go ahead and set up an appointment with a psych doctor so that this doesn't happen next time, but for right now, it was not going to happen for me.
My blood was boiling. I told her that it was ridiculous that I was going to be denied a transplant because of a simple psych evaluation. It's not like I was suicidal or anything. She agreed that it was ridiculous too, but rules are rules. I told her that I had an infection for over a year that kept me off the transplant list for that long, and I was finally infection free for about six weeks.
This was quite true. I became septic from an infection that initially put me in the hospital for three weeks in July 2015. At the time, I had a blood clot in my heart at the time as well that was also infected. Open heart surgery to remove the clot was discussed. I was on the same and only medication that could really be used to treat the infection for more than a year. Labs were taken to test my blood for the infection every few months, and every few months I wound up back into the hospital because I always tested positive. I simply could not get rid of it. Then the last time I was tested, around Oct./Nov. 2016, the results were negative. The infection finally vanished after all this time.
Being septic was something I had never experienced before, nor is it something I will ever forget. It is something that I remember quite vividly. It started when I was at my nanny job around 4 pm. I was making lunch for the boys. I took a water bottle and put orange Mio in it. When I went to shake it, all the contents came flying out. I had forgotten to put the lid on...this is something I had done every day for the boys. A few hours later, I was putting away the dishes, and I remember feeling weird and a little of it. I became super OCD and caught myself pausing a lot. I remember driving home. I was super aware of my surroundings and paranoid. When I made turns, it felt like my lane was closing in, and there wasn't enough room for my car. When I got home, and I was talking to my mom, I found myself talking weird and not being able to form sentences properly. It was around 10 pm when I tried to go to sleep. My eyes were closed, but I couldn't fall asleep because all I kept seeing were images. I kept trying to get comfortable. I looked at my phone, and all of the apps had squiggly borders. I looked over at the red light on my TV, and I saw it turn into a square, and then grow and come at me. I got up. I was pacing around the house. The picture frames and TV also turned into squiggly borders just like the apps on my phone.
I was hallucinating, but at the time, I didn't know that's what was happening. I remember telling my mom that I was two different people. I was a person in the real world, and I was also a person in another world. I told her right now, I'm in the real world. A few minutes later, I told her I was entering the other world, but then I came back to the real world. I told her I could prove to her that I was in the real world by writing it down saying that I was. When I tried to write, I couldn't. I was fully aware that I was acting strange, but the thing was, I couldn't control it. It was about midnight when I finally said that I needed to go to the hospital because something was wrong. When I tried to walk to the car, it felt like I was drunk. I couldn't walk straight.
Along with this infection, I also endured countless catheter exchanges in my chest, mainly due to the infection; I had peritoneal dialysis, which required major surgery to my abdomen to place yet another catheter, so I was sporting a catheter not only in my chest, but in my abdomen as well; I had fluid buildup in my right lung on two separate occasions, a month a part from each other, due to the peritoneal catheter not working properly for me. It was discovered that I was born with Kohn's pores, which are little holes in the lining from my peritoneal cavity to my lung cavity, so every night I dialyzed, solution would seep into my lungs.
Twice I had to receive a thoracentesis to remove the fluid from my lung. The second time my lung was filled with fluid, my lung almost collapsed. The doctor in the ER room was amazed it hadn't because he said it should have already.
The Snuggie I would use during my Tuesday, Thursday, Saturday 5:45 am dialysis treatments.
I've also had a blood clot in my heart more than once, a blood clot under my clavicle, and a blood clot in my lung, again where I was told I should've died from it.
My nephrologist is in his 70s, and he told me that I was one of the most complicated patients he has ever had, and I was only 24-years-old. He told me I shouldn't have had all these issues. Because of all this, I told the woman on the phone that I'm sure if she called my doctor that they would let me have the transplant, regardless of me having a psych evaluation. There are seven nephrologists associated with Tampa General, and I knew all of them very well on account of how many times I was in the hospital. All anyone wanted was for me to have a transplant, especially because I was finally infection free, and their fear was of me getting another one, since I was prone to them. The conversation ended with me being told that it just wasn't going to happen for me.
About an hour later, I'm at work, I received a phone call. It was the same woman I had just spoken to. She said, "Well, you have been reactivated on the transplant list, your doctors have approved you, and we want you to come in for testing tonight. When can you get here?"
All I said was, "Are you serious?!"
She replied, "I am so serious."
I could not believe what was happening. This was insane to me. This was December 12, 2016. I went in that night, got my blood drawn, and had to wait a few hours for the results because my blood had to be shipped somewhere else and then sent back to Tampa General.
It was about 3 a.m. December 13, 2016, and a doctor came in and told me that I was a match for Emmanuel's kidney, and I would be having the surgery around 8 a.m. I was thinking, had I not made those phone calls, I would not be here right now. I really had to fight for this.
The surgery took about 4-5 hours. Typically for a kidney transplant, the recipient only receives one, but because Emmanuel was only 5-years-old, his kidneys were very small, so I received both. Did you know that the only organ that can be donated to someone of a different age are the kidneys? All other organs have to go to people of similar age because of the size of the organs. Emmanuel's eyes, heart valves and liver were donated to other kids his age.
I got out of the hospital a week before Christmas. To everyone, my story became "The Christmas Miracle," and being that Emmanuel's name is a biblical name, translating to "God is with us," it just tied everything together in a perfect Christmas story.
They put 20 pounds of fluid on me during my transplant surgery.
A joke from a friend after a thoracentesis procedure-February 2015
FUN (SCARY) FACT:
The surgery was over, but I was coming out of anesthesia, eyesight was very blurry, and I remember it felt like I was choking, something was stuck in my throat. I couldn’t breathe. I tried to grab whatever was in my throat, but I couldn’t. I couldn’t move my arms. I remember trying to scream for help but I couldn’t, and all I could hear was me trying to say “Help. I can’t breathe.” I saw two people standing over me, and they said my name. I remember thinking, “Why aren’t you helping me?!” I honestly thought I was going to die because I was choking to death. Come to find out, I woke up with the breathing tube still down my throat. I couldn’t move my arms because I was strapped down. They do that because we don’t have protective reflexes when we are in that state. So that was fun!
Just waking up from my double kidney transplant on December 13, 2016. My friends got me a cute stuffed animal from the gift shop!
Plasmapheresis & IVIG Infusion & Chemo
2017, 2020 & 2021:
A few months after my transplant, in February 2017, I was told that the autoimmune disease I have, FSGS, was starting to take over in the new kidneys. I was admitted to Tampa General Hospital where I had another port placed. My chest was no longer a viable option since all my veins had scar tissue from all the previous permcath placements I had while on dialysis. Side note: Permcaths placed in the chest are tunneled under the skin and then sit in your heart. It's considered to be very dangerous because of the placement.
So instead, I got lucky and got the permcath in my right groin. It's not as terrible as it sounds, although uncomfortable all the same. the port basically started in my upper right thigh and was tunneled under my skin, connected to where my thigh meets my pelvic bone, and then tunneled up a little further.
I did plasmapheresis and IVIG infusions for about six weeks. It only helped a little, so the port was removed, and I was just taking oral medication. Something I have learned is the misconceptions of transplants. One, a transplant is not a cure, not even for someone who doesn't have an autoimmune disease such as myself. Transplanted organs can last anywhere from 10-20 years. Even without my autoimmune disease, statistically speaking, I will have to have another transplant at some point since I was 25-years-old for my first one. Two, transplanted organs require the recipient to take anti rejection medication and steroids for the rest of their life. These pills are designed to trick the body into believing that the transplanted organ is in fact their own.
Right after transplant, I was placed on Prograf. This made about half of my hair fall out. It was extremely embarrassing. I had a huge bald spot that took a few years to grow back to the rest of my hair's length. Thankfully I have really thick hair, so I was able to cover it up. I couldn't wear my hair down for a few years until it all grow back. Now I am taking Cyclosporine instead, which has the opposite effect. Can't win, can I? Yes it makes my hair grow, but I mean, it makes ALL of my hair grow. I had dark hair growing under my chin. My leg hair was growing in much faster and thicker...same story for everywhere else. So thus, laser hair removal became a necessity.
Not only do the anti-rejection meds and steroids have those kinds of side effects, but it also affects weight. I was 135 pounds from before I started dialysis. While I was on dialysis, I dropped to about 110 pounds. Right after transplant, I was 125 pounds. Then during plasmapheresis in 2017, I was about 98 pounds. Once I was off of that and remained pretty much healthy up until September 2020, I have been sitting between 115-120 pounds...which brings me to September 2020.
So from April 2017 until September 2020, I had no hospitalizations. I was in the process of trying to switch my Cyclosporine out for an IV treatment that I would need once a month. I wanted to switch because I was tired of the side effects I was getting from Cyclosporine. Because I was making a big switch, my nephrologist ordered routine bloodwork for this type of scenario just to make sure everything was okay. The type of bloodwork they did was to check my Donor Specific Antibodies (DSA), which measure if there are antibodies built up that are attacking the kidneys, and AlloSure, which is a test to check if there is damage to the kidneys.
Best private room with a view-September 2020
The day after I got this bloodwork done, I got a call from my doctor's office. They told me that my DSA was very high and so was my AlloSure. The test for the AlloSure is supposed to be below 1. My level was 6.7. Both of these tests showed that I was in the initial phases of kidney rejection. They said they were all very shocked when my test results come back so high because they had just seen me in the office with my recent creatinine levels, and everything appeared normal. I wasn't having any symptoms and my kidney function was normal.
I thought maybe my AlloSure levels were normal for me because of my autoimmune disease, so I wanted to know what my last AlloSure test had said. Well, apparently this was my first test done because back in 2017 when my DSA levels were checked, AlloSure didn't exist yet. My transplant coordinator explained to me that the AlloSure test is like a crystal ball. It can see if there is signs of rejection before it actually starts to show in my creatinine levels or protein in the urine.
So the next step was a kidney biopsy. Those results came back and showed that my kidneys were inflamed, and it showed that the cause of rejection was not my autoimmune disease. From there I was sent to the hospital. At least I got my own room and probably the best view I've ever gotten out of all the times I've been hospitalized!
Groin permcath placement-Sept. 2020 to Oct. 2020 and then again Feb. 2021 to March 2021.
For the first three days, I was placed on a steroid IV drip called Solu-Medrol. On the fourth day, I had to get a port placed to do plasmapheresis. I went under thinking the port was going to be in my chest, but I woke up with it being in my groin area again. My chest veins are just too scarred.
I did five plasmapheresis sessions. I got the port taken out about a week and half after having it placed. Next came chemo. No, I do not have cancer. Chemo is used for other things as well, but it is still chemo nonetheless. Chemo was used for me to help get rid of some of the antibodies.
I did multiple chemo sessions from October 2020 to November 2020. It's a drug called Rituxan. It's a 4-5 hour IV drip given with Solu-Medrol. During the treatment I experience flu like symptoms. The muscle aches were the worst. This drug also stays in the body causing side effects up until a few months after treatment.
The symptoms come and go, and they come about randomly. I get nauseous from time to time. Sometimes it will last 24 hours. The worst of it is the muscle aches. I will have terrible, cramping lower back pain that will last 30 minutes. I will also have the bouts of severe, intense stomach cramping as if I just took five laxatives, except it's not a bathroom emergency. It's just this level 10 pain that almost knocks the breath out of me because it hurts so bad. This will usually last about 15 minutes.
Outpatient Procedure Gone Haywire June 2022
On June 1, 2022, I had a scheduled outpatient procedure at Tampa General Hospital, my alma mater. This procedure was a recanalization of my superior vena cava since this main vain became occluded due to scar tissue build up from all the permcaths I have had.
This is a pretty non invasive surgery in a sense that a patient is not cut open. However, doctors are still dealing with the superior vena cava. They went through my right chest to get to that area. From there, the plan was to clear the scar tissue out and put stents in to keep the vein open.
During this attempt, the doctors accidentally ruptured my superior vena cava causing 2 liters of blood to spill inside of me and pool around my right lung. My right lung collapsed, and an emergency chest tube had to be placed to help drain the internal bleeding I was suffering from. I was in the ICU for a week because of this. I had to have 3 blood transfusions.
The first few nights I was intubated. Since I only had one lung to breathe with, I couldn't be awake long enough to breathe on my own. I had a chest tube put in because of this that I had in for two weeks while I was there. Every so often the nurses would wake me up because they couldn't monitor my brain function. I was put back to sleep with Propofol. When they would wake me up, I awoke with a breathing tube down my throat and my arms restrained. The restraints are necessary because the first human instinct would be to pull the breathing tube out. I tried to speak, but I couldn't. With my wrists pinned down, I had to write whatever it was that I wanted to communicate.
Those first few nights were the absolute scariest. I really couldn't comprehend what had happened or what was going on. All I knew was that I didn't have my phone, and I needed my mom to know what was going on.
I believe it was the second or third night that the breathing tube was removed, and I needed to breathe on my own, even though I still had so much blood filling my right lung. It was extremely difficult to breathe. That night I felt like my nine lives were truly up. I was laying on my back in the ICU, and I told my nurse that I could not breathe. He checked my vitals, checked the machine, everything appeared normal. I simply could not catch my breathe and could not breathe in deep enough to feel safe to breathe in and out. He called his supervisor and filled her in. He told her that I was saying I couldn't breathe and that I was appearing to have to have impending doom.
As soon as he said that, I remember thinking that was exactly how I felt. I truly felt that it was at any moment that they were going to have to have a whole team of nurses and doctors surrounding me, trying to revive me. I swore I was about to hear that I was coding. That was how badly it felt like I couldn't breathe.
The nurse adjusted some pillows under me, and it helped a bit. What I realize now probably happened was that I was laying flat on my back with a nearly collapsed lung. Of course I was having difficulty breathing on my own.
The blood that was draining from my chest. When they pulled it out, I could hear myself breathing through the hole in my side.
A picture I sent my friend before I went under, not knowing what was about to happen.
The second chest tube that got placed. I had 6 tubes coming out of me at one point.
A few days later I had to have another procedure to put the correct chest tube in. Interventional Radiology put in an emergency chest tube in during the chaos that ensued because that was what they had on hand at the time. The thoracic team came in, put me under, and put the correct chest tube in.
A few days after this, my right arm and neck were swollen. Imaging was done only to show that I had a bunch of blood clots in my arm, clavicle and chest. So I had to have yet another procedure done so they could go in there and remove the blood clots. And get this, the doctor doing this procedure was the same doctor from the initial procedure...
After I found this out, I started texting people that didn't know I was in the hospital, letting them know what was going on. I only texted a few people that I really needed to know because it was at this point that I did not think I was ever coming home. I truly thought that I was going to die in that hospital within the next week.
But that didn't happen. I don't know why. A good friend of mine told me that I am here for a reason. He says the devil can see when good things are going to happen for someone, so they will try to take you or knock you off your path.
I can see the truth to that, and I would like to believe it myself, but he's been trying to knock me off my path since I was born. Just in terms of my health, he's been trying to that for about 10 years now...If it's really him doing that, that would good things are going to be happening for me, but somehow I can't feel that and haven't really seen anything to prove that.
So I am at odds with how I feel about everything that has happened to me. I feel like I am supposed to share my experiences to help others somehow. I would love to team up with Selena Gomez, but that seems nearly impossible.
I've always thought that once I started making a name for myself in the acting world, once I started booking and getting my name out there, that I would be able to use that platform to share with others and help in ways that I wouldn't be able to with where I'm at now.