My Life in the ICU
Updated: Sep 7, 2020
It’s been over a month and I am just starting to feel all kinds of emotions again. In grief, it is common to experience emotional numbness, especially in the days to weeks following a death. But interesting enough, a study from the Greater Good Science Center faculty director, Dacher Keltner suggested that there are at least 27 distinct emotions — and they are intimately connected with each other. This would explain why now as I am starting to feel I feel more than one emotion. But from what I have experienced, allowing myself to feel all of these emotions, has allowed me to understand more about myself especially during the worst moments in our life.
July 15, 2019, will always be known as the most painful day of my life but it was also the day, I discovered immense love unlike no other. Because it was the day, I made the decision to remove my 30-year-old, fiancé off life support. The fact that I can write this without breaking down into tears is an achievement. You may have met him, even befriended him because he and I worked together on a few projects. He was the engineer, the tinkerer and I was the designer, the one who saw the world through colors, sounds and feelings.
I met this loyal, and stubborn Taurus man 5 years ago. I had just returned to the states (after living in Portugal for months) and decided to spend some quality time with my family in NJ one afternoon. Little did I know he would walk into my life. We were both not looking for one another but somehow our paths crossed. I was the girl who was completely happy with her career and life. But when I met him, I quickly realized that there was more happiness I could have by having this person by my side. I’ll be honest, from the moment we locked eyes, we had instant chemistry. But that wasn’t what attracted us to each other, I believe it was the fact that we were open to whatever may come. We both had been in relationships before but somehow this felt different from the very start. Without any fear, any hesitation, we dove heart first, and began co-creating a life together.
Like any relationships, we had our disagreements, our struggles. But we made it a rule to always try and face them together that way we would both come out a bit wiser, a bit kinder especially towards one another.
It was only about one year ago that this, 6'1, hazel eyes, bearded, 29-year-old man, was a functioning man who had one of the strongest immune system I’ve ever seen. So, when results came back on July 2018 that his liver was in trouble, we were both in shock and disbelief. “How can this be?! He’s only 29 and has never been sick before!” — I would say to all his doctors and nurses. They would scratch their heads in disbelief as well and thus began the roller coaster of death for us both.
If we weren’t at work, we were in the hospital or at doctors’ offices having blood work, awaiting results and being educated on the liver. At home, I spent more time researching and reading books on the liver than ever actually touching my own work, tv or bed sometimes while he slept because once the liver begins to slow down your entire body does so too. I became obsessed and while looking at him unable to control his body, I made it my mission to be informed as much and as fast as possible on liver disease. Although he hadn’t been diagnosed with liver disease at that time, I was already ruling out all possible scenarios in order to stay two steps ahead.
As overwhelming as this all was for him and I, this did help us when it came to choosing which doctors were capable of handling his liver issues. Little did I know, my new life as his caretaker had begun. On October 2018, he was hospitalized for the second time, however this time Doctors could not do much for him. They discharged him but not before telling us both to find a hospital specialized in Liver Disease. I couldn’t believe a hospital would discharge a patient knowing he was not well. I remember the day as if it was yesterday. Doctors came in to hand him his discharge papers. “Wait. What do you mean discharge? His numbers are all over the place. He’s barely hanging on. You’re going to kick us out because that’s what it feels like! No! I need your entire team to explain to us why!” But no one was able to give us more information other than go see a specialist. I ran out the room because I couldn’t hold back my tears, and a nurse came over to comfort me. She then said “Cynthia, just because these Doctors are moving on from treating Ryan, doesn’t mean all other Doctors you find will too. Keep looking for your team that will fight alongside you and him.” That’s when I realized, I was going to need more help but the question was how? I understand that this Hospital was way in over their head when they admitted Ryan 3x. They saw a 29-year-old and assumed he would bounce back. But that wasn’t what happening. From July to October, his platelet counts, INR, Weight had dropped significantly and transfusion, vitamin and supplements were barely enough anymore to keep him stable. I knew I had no time to be angry, upset, sad because his life was on the line. So, I immediately began my search and found a Liver Hospital that next week he was discharged. It took me only one hour to learn that the hospital was also a Transplant Hospital. Calls after calls I tracked down the liver transplant coordinator at University Hospital and began setting up all of his liver transplant appointments. Technically he was supposed to be transferred from his previous hospital to this new Transplant Hospital be given an appointment but the Coordinator heard the sadness and desperation in my voice that she did all the paperwork. “Cynthia, I am sorry this is happening to you both. But you did the right thing. We will help you both.” But little did we know things would turn for the worst rather too soon. That month, the liver transplant team confirmed that Ryan had stage 4 cirrhosis, 3 tumors which looked to be growing and on top of all that, he was battling anemia. So, the live transplant team did not waste any time and quickly began the process to get him on the transplant list. I could still picture Ryan’s face when his Hepatologist walked into the room to inform him and I that he would need a new liver and life would be different for him. A part of him felt like he had let me down. But I reminded him over and over again that what was important now was to focus on getting on that transplant list.
We both couldn’t have been more scared about it all. So, I made it a habit to check-in with him especially after each appointment by asking him “How are you feeling?” — just to make sure we were both on the same page. His response would usually be the same “I’m alright I guess.” But he wasn’t alright nor was I. Our life had changed so quickly that we didn’t even get a chance to say goodbye to the life we had once. We had to immediately jump into “Liver Transplant” mode. What did this mean? Well first off, the whole process of getting on the transplant is exhausting so I had to come up with creative ways to take mini vacations in between each doctor’s appointments. We would Airbnb a house in a new state we had never been before and simply try to live like a local. Sometimes they would be planned, but most of the time sometimes they would be spontaneous. No matter what though, they were always fun, because our life in that moment would seem like it was back to normal. We would talk about everything except liver disease and liver transplant. We would explore neighborhoods, restaurants, we would dream of the day when this was behind us. We would then return to NJ feeling energized and ready to take on this liver disease. But what exactly happens during this liver transplant process? Well the patient isn’t the only one who has to go to all the appointments and educational classes but the healthcare proxy as well. Ryan’s healthcare proxy was me. We spent a lot of time writing notes, asking Doctors questions about new symptoms and medications, and we even managed to teach ourselves how to take our vitals every morning, afternoon, night, and keep track of it all.
Ryan for the most part spent time at home, in bed, exhausted due to all the supplements and medication he was taking daily. He maintained a strict low sodium diet and managed to go to therapy twice a week. Because if you didn’t know, liver disease causes mental instability, depression and anxiety. I would say to his Doctors “Ryan hasn’t been himself. I am worried. Should I look into other kinds of support?” And the response would be the same “He is on a lot of medication, this is expected.” But that wasn’t good enough for me, so I reached out to my community of practitioners, holistic and wellness experts for advice. It was clear Ryan needed more support than we were giving him. So, I asked Ryan to talk to someone. At first, he was against it. “I don’t need therapy!” But after his first session, he turned to me and said “Cynthia, that wasn’t so bad.” Even I began to see a relationship counselor, because I knew I needed help navigating all of my emotions, and thoughts. The amount of stress, doubt and fear that comes over you when you learn about a critical diagnosis is too much for anyone to handle on their own.
As months passed, we somehow managed to make his new liver disease life work. We even began to plan our wedding, and managed to compromise on having one child of our own and adopt the other. But on June 15, 2019, when I arrived back to our apartment from a week of work travel, I found my fiancé in a terrible state, and immediately rushed him to his transplant hospital. I will never forget that day when I arrived at the doors of his hospital, ran inside to grab a wheelchair and the day I left the hospital without him by my side. As we both entered the ER, I gripped the handles of the wheelchair as tight as possible and said to him “Babe, whatever happens in here, we are not giving up.” He lightly responded “damn right”.
It didn’t take long for the ER team to immediately take us up to the ICU unit. This was the beginning of our life in the ICU. I found two chairs out in the corridor, and dragged them inside his ICU room, and told the nurses and doctors, I am not leaving without him, so don’t try to kick me out after-hours. For 31 days, I slept, ate, and even did work right next to his bed, holding his hand. I would only take turns with my sister and childhood best friend to quickly go home, shower and drive back to be by his side.
Each day, Ryan and I would have a routine. We would welcome each morning with bloodwork drawn by his nurse at 5am, then by 6am I would open the blinds, so he and I can feel the sun upon our faces and watch another beautiful sunrise together. I would then hum sometimes sing some of his & my favorite songs, I would wash his face, brush his hair & teeth, because by 8am, rounds would commence and I wanted him to look like himself. I would then update each team of Doctors, fellows, residents and interns that would arrive, on what medications he was on, lab results, any fevers, chills, swelling, bleeding, or if he desatted overnight. We had teams of specialists, from ICU, Hepatology, Hematology, Kidney, Infectious Disease, ENT, Respiratory, Vascular, Palliative Care not to mention the day and night nurses, interns, residents and fellows, who would begin calling us “team Rylen”. Before I knew it, they would begin to trust me as if I was a member of the medical team because of how well I knew the patient, Mr. Alvarez.
Things got pretty intense within those four walls as well. In those four weeks, I went head to head with the ICU Director and some attendees when I knew they weren’t doing enough for Ryan. After all, I shouldn’t be coming up with ideas on how to save him. I had several ethics and compliance board meetings to discuss his medical condition and next steps. I even got to question some nurses and interns while they were doing charts because I’ll be damn if people weren’t taking his life seriously. There were also a lot of near-death moments, like when Ryan desatted and needed to be intubated for the second time.
One evening, I had gone to the restroom and on my way back I stopped to console a woman whose husband was in a coma. Throughout my time there, one of my biggest fear was, “If I leave his side and take too long, will I come back to him being gone?” So, I quickly excused myself and ran back to his room, and noticed the light above his room was flashing blue which only meant “Code Blue”. Then I watched the attendee on call, fellow resident and nurse rush towards his room.
I immediately stepped inside his room and the attendee looks to me and says “We can’t wake him! Cynthia wake him up!” I rushed towards his side and began calling his name while lightly slapping his face. He was out cold. Then suddenly, I notice his lips turn blue and that’s when I yell “He’s stopped breathing!” — I immediately stepped back, and let the ICU team jump in, “He’s hypoxic, we got to intubate now! Page respiratory! Where are they? We can’t wait any longer, let’s intubate him now!” I got to witness too many times and every other scary moment you can and can’t imagine. I know this is rarely ever the case for many family or friends who have a love one in the ICU. Technically, visitors are not supposed to sleep next to the ICU patient for a month, let alone befriend the entire ICU staff, security guards, Board of Directors of the Hospital, and medical teams. But somehow, I did.
My life in the ICU, strengthened my perspective on life and death. Everywhere I looked, there was someone fighting for their life, fighting for another day, another chance to do things different, do things right. For that whole month, every single second mattered to me because I never knew how long I had him in my life. In all honesty, it wasn’t much different than how we both lived our life and treated each other’s uniqueness and individuality in the 5 years we spent together. We never stayed angry longer than we needed to, we always forgave each other and appreciated each moment we had together. He was better at it than I was, always surprising me with the small but significant details of life. But most importantly we said and showed everything that was in our hearts, especially how much we loved one another. I was told that while in the ICU, it’s easy to lose hope but I somehow managed to find love, a deeper love I had never felt or experienced before. My family would say to me “the love you feel is unconditional, Cynthia.” To this day, I don’t know how I did it. How did I not break down or give up?
Ryan would surprise doctors and family members every week. His first week, Doctors told me he would never wake up but I refused to believe that because I knew Ryan was fighting to stay alive. So, I prayed every day, I prayed for him, for myself, for the Doctors and staff. I then talked to him every day as if he was able to understand me. I made sure he knew I was by his side every moment, and that I believed in him and that he could get out of this. By the second week, a miracle happened. He somehow was able to fully gain consciousness, with a tube down his throat he began to hand sign “I love you” and a “I am ok”. By the third week he was communicating with everyone around him via text messages and had conversations using his eyes and hands with his nurses. I must say, as I watched him every day interact with everyone around him in such a positive and kind way made me fall in love with him even more. But on the fourth week, I was told by his Doctors that if Ryan did not get off life support permanently, it would be difficult for him to do so later. Even though he was the best we’ve ever seen him, I was scared that the ventilator was the reason why he has all this strength to be fully awake, cognitive and present. And if it was taken from him, he wouldn’t make it on his own.
The weekend of July 14–15, I remember I didn’t sleep for 48 hours straight because he had accidentally removed his breathing tube while dreaming. I had gone home to shower around 11pm on July 14th and I received a phone call from his night nurse saying “Cynthia, we need you to come back to the hospital right away. It’s Ryan. He has removed his tube.” What!? How could he do that? What was he thinking! Is all I could think off as I drove back to the Hospital. But as I entered the hospital doors, walked up to his floor and into his room, all those thoughts went away the minute I saw his face. In that moment, all I could feel was this calmness because for the first time, he looked at peace. I walked up to him gently and whispered “Hi baby, so tell me what happened?” And he began to tell me “I was dreaming I was drowning and I couldn’t breathe because I had something in my mouth and I went to pull it out and woke up and noticed I had pulled the tube.” My heart never felt so grateful just hear his voice after 4 weeks of being intubated.
All I could say to him was “It’s alright, you are doing great my love from what I can see on the monitor. Just keep taking deep breaths. I’ll be right here.” And I pulled up a chair and sat next to him holding his hand. Since I had seen him lose consciousness because of lack of air flow to his lungs, too many times before, I could not sleep so I just stared at him, his vitals, his chest, making sure he was taking the right amount of breaths a minute. His night nurse must have felt terrible that such a thing could have happened while under his watch that he entered the room with a tray of food, pillows, blanket and snacks to keep me up.
The next morning, as I awaited his bloodwork results, a strange feeling, came over me. There was something different about that day. Suddenly, as I looked towards the monitor, his vitals began to plummet. His lab results came back and they were the worst they had ever been. And on top of that he was hemorrhaging and no amount of transfusions was stabilizing him. He then began to complain about a strange pain all over his body which only worsened by the hour. By the afternoon he was in so much pain that he barely recognized me. He would scream my name, “Cyyyyynnnnnthiaaaa….ahhhhhhhhh!!!” and I would try to hold his hand while his nails pressed unto my skin. In that moment, for the first time my heart ached. Each time he screamed my name my heart would ache even more because I knew I could not keep him like this any longer. See, mentally I thought I had processed and accepted his diagnosis, and survival rate, I had a year to do so. But being in ICU for 30 days, watching him fight for his life was all I needed to really accept his diagnosis and have closure. I can never put into words what it felt like to be responsible of someone else’s life. Just the thought of having a say over when a person has had enough, scares me but in that moment, for the man I loved, I would’ve done anything and everything and I did. His nurse that morning, came in and asked me “what do you want to do?” — With a heavy heart, I asked to speak to the ICU attendee on call but in the meantime to give him sedatives for the pain.
While the nurse began to inject the sedatives, she couldn’t hold back her tears. “I shouldn’t be crying Cynthia. I’m sorry” she said before leaving the room. I sat next to his bed and caressed his face while tears began to fall down my face for the first time in a long time. I got close to him and whispered in his ear “You are so brave my love. I am so proud of you. I love you forever and always. You rest now. I will be right here.” With his eyes semi opened, he squeezed my hand and brought it towards his heart. That moment in time will forever be ingrained in my heart because it was just what I needed for what was coming next. I needed to accept the inevitable. I needed to go against his wishes and let him go.
The ICU attendee on call arrived just in time for me to wipe my tears and walk me through the whole process again and again. She would explain “Ryan won’t feel anything. He would just drift into a state of deep sleep.” I then requested to speak with all other attendees from each department for one last time, to go over Ryan’s probability of survival or if he could make it to a transplant. They all would say “Cynthia, the question is not about keeping him alive because we can but is this how you want to keep him alive? Do we continue with extreme measures like Ryan had requested however he will now have to endure excruciating pain and will need to be sedated at all times, or do you make the call for him and give him a quality of life he deserves?”
“Quality of life? Or quality of death?” — I responded. Years back, Ryan and I talked about “what would we do if one of us had a serious accident?” We both agreed we wanted no funeral, just cremation. But he wanted all extreme measures. I would ask him over and over “Are you sure you want to have machines and pressers to sustain your life?” And he would respond each time with “Do everything you can to keep me alive. I do not want to die.”
As the Doctor continued talking about Ryan’s prognosis, I began to think of all the things we planned but never got to do. The big wedding, he was more excited for, me in a long white dress, him in a tux and bow tie because loved bow ties. The kids we dreamt of having one day. The European backpacking trips we wanted to take. The adventures of simply growing old together. I remember when we first met, I blurted out “Death does not scare me.” He looked at me as if I was crazy. I then explained that “Ever since I was small, I never feared death like many did and do today. Perhaps that is what has guided me to make bold decisions in my life. I believe death is part of life. I do however fear not living while being alive.” — knowing this about me did not scare him, instead he welcomed my fearless, freedom loving spirit, who sings every morning the minute she wakes up, dances in the street just because, and is too optimistic at times, with open arms. We couldn’t have been more opposites from each other. But somehow, it worked. We accepted one another as we were. Never trying to change one another. We supported each other mentally, physically and most importantly emotionally. We were best friends, business partners and lovers. As I looked at him, hooked up to so many machines and on several medications, I knew the time had come.
While being in the ICU, and learning their motto “One day at a time” — I began to understand why practitioners won’t treat family. Doctors would remind me daily “Cynthia, don’t let your emotions cloud your judgment.” When we see our love ones fighting for their life, we can’t help but let our emotions, take over which doesn’t leave room to think clearly or does it? I for the most part do not believe this to be true. If anything, our emotions if we allow ourselves to understand and accept them for what they are, can help us through the most difficult decisions in our lives. Why shouldn’t we treat patients and their families with emotions, after all isn’t that what helps us connect in a deeper level with the problem in hopes of finding the right solution?
I had never been a healthcare proxy to anyone before but somehow each day that passed I would hear comments by nurses and doctors of how they had never witnessed anything nor anyone so passionately fight for someone while in ICU. On various occasions, Doctors and nurses that were not part of his team, would come by his room just to say “You must be Cynthia, the fiancé we have been hearing so much about in this hospital.” My response would always be “Oh is that right?” They would then say “Yes, your fight young lady is a true testament to what a human being is capable of doing for someone they truly love. We don’t see that often in the ICU or in hospitals. As hard as it is, keep going.” Hearing these men and women I’ve never met before empathize with my situation, somehow would give me the strength I needed to continue fighting for him. As Ryan’s healthcare proxy, I didn’t feel like it was much different than being his partner, best friend or lover. If anything, it was an honor to have been his voice, and represent him as best as I could. I would even remind every single person that walked into his room, that Ryan was still with us and that he will be treated with the same respect as any individual walking in this hospital. I did not allow myself to choose whether he was a patient first or my love second as some Doctors would have wanted. He was both to me equally. My emotions if anything carried me every day to make the right decisions because I allowed myself to feel them.
As I watched his nurse turn off his dialysis first, then pressers, then give him another round of sedatives, I felt as if a spear had begun to enter my heart slowly. The nurse would repeat to me “You are not killing him. His disease is killing him.” But frankly, I didn’t care to hear that at that time because it didn’t feel that way. I texted my family right away so that they could be present. His family were already present but they would leave rather soon because seeing the death of their son and brother was too much to handle. It only took less than 10 minutes for him to begin to take shallow breaths. While sitting next to his bed, I played what would have been our wedding song, “Can’t Help Falling in Love”. I caressed his face, for the last time, placed my head over his heart and felt him take his last breath. I then look towards his nurse and said “Can I call it?” She nodded and I said “Time of death, 7:15pm” Immediately after saying those words, I went numb, which was all new because I had been feeling so much but at 7:15pm on July 15th, when he took his last breath, I stopped feeling.
I remember falling to the floor and crying uncontrollably. The nurse came in to help me up. I climbed up unto his bed, squeezed myself next to him and laid my head and my hand over his chest. He was still warm, and I could still smell his scent. I closed my eyes, and for a second, I felt as though we were back in our own bed, and life was great. But as I opened my eyes, reality kicked in. After an hour alone with him, I had no more tears left and my family arrived just in time to see me and him together for the last time. My youngest brother, who looked up to him like a big brother shouted “he’s not dead, he’s right there! Look! He’s right there!” I hugged him as tight as possible and whispered, he will always be with you little brother. My sister, my mother, and father all broke down and just cried by his side. I consoled each of them reminding them that he loved them so much. He would not want them to be sad. They spent hours in the room unable to pull themselves away from his body while I just sat on the corner of the room, trying to remember his voice and the hand squeeze he gave me. As I looked towards the doorway, I notice two nurses getting ready to clean him up. I got up, and convinced my family to walk around the hospital with me for the last time until they finished. As I walked out of his room, I paused and walked up to him and gave him a “see you soon” kiss as I would each time, I left any room. Strangely, in that moment, when I went to give him the kiss I never felt more alone, but not lonely because I still felt his love in me.
Today, I am back doing what I love most which is my career, and slowly seeing friends after taking a month off for myself and my feelings. I’ve always known how lucky I have been to have a career I worked hard to create. When you’re young and are starting out in your career, you set these rules thinking you will have more by focusing more and only committing to one thing in life. I sure was wrong when I met Ryan. Because not only did I become more focused but I was truly supported like I had never thought I would need or want. My career flourished, my drive increased, and my love for life was just reaching its peak because I had a partner to be vulnerable, to be whole self. Although, I have yet to fully come back to the social scene, I am enjoying these intimate one on one moments with close girlfriends who have also experienced death, loss and grief. Sometimes, it feels as if I belong to a secret club that people are too scared to talk about. You try and talk about death, loss and grief, and see how many weird faces you get. At the end though, I am grateful to have my community that sometimes mean to say the right things but there are no right things to say to a grieving person.
Am I ok? I am normally asked this about 1,2937290 times a day and my answer simply is “I will be.” Because I am determined to be. There is no manual to death and grief. It is different for everyone. So, I am trusting my intuition, more than ever before. My intuition has always been my compass in life. After all, it led me to the man who taught me about love, life and death. Another question people keep asking me is “When will you start dating again?” I’ll be honest, I was never the girl who seriously dated because I have always been a big believer of “if it’s meant to be then it will be. I can’t say when I’ll start to date again or if I’ll ever be able to. But I believe I’ll know when I feel it. Whether that would be weeks, months, years, I am letting fate decided. All I know is I’ve experienced something incredibly painful and it will take a very special man to accept and respect this part of me. If there’s one thing I have learned from this tragic but beautiful part of my life is that true love does exist. Because of that it makes me feel confident that maybe one day I’ll experience again. But if I don’t, if perhaps I’ve reached my quota of love in this lifetime, I am okay with that too and if anything, I am simply grateful that I was able to find it, experienced it, and learn from it.
Now, as I pack up our things and get ready to leave the apartment we once shared, I can’t help but wonder what will this new life of mine look like? Whatever I choose, whether I am ready or not, I am letting my intuition be my guide.