July 4th 2016
Saturday, July 4th 2015, 5:30pm, my husband, Ray’s cell phone rings. We are celebrating Independance Day with our family, his side. My mother and Father are in NYC, and have been there for a few weeks. Ray, hands me the phone, “Hon, it’s your dad.” “Hi dad,” I say with excitement. Dad’s voice was noticeably soft. I sensed urgency, fear and sadness. The only words from that call I remember is “Your mom is very sick and is in the hospital, come as soon as you can.”
With only few articles I could think to grab, Ray rushes me to the next flight to NYC arriving the following morning. I am bedside at the hospital by 5:30am Sunday. Mom recognizes me but is very weak and delirious. I learn she has suffered from ALF, Acute Liver Failure and is very sick.
Mom is a very active, healthy 73-year-old woman. She appears many years younger, often mistaken for my sister. It has caught us all off guard. “What? Liver failure? How is this possible? She was fine when I spoke with her just 2 days ago.” The events are so surreal, happening so fast. I can’t seem to wrap my head around the severity.
We learn ALF is different than chronic liver failure or CLF in that it is very sudden, often aggressive and liver transplant is the only hope in most cases. There is rare cases where one could spontaneous recover from ALF but only few. In the case of ALF, the liver fails very quickly so a living donor is not an option since the testing required to qualify the donor takes 5 weeks. Whereas CLF is often a result of excessive alcohol drinking or alcoholism, ALF can be caused by hepatitis, medications and or supplements, or a specific type of wild mushroom that can be poisonous.
We are dumbfounded and in so much pain watching mom deteriorate so fast. She lay in the hospital bed and as the day moves to night, mom is becoming less responsive and more delirious. The toxins from her failing liver are moving up to her brain and causing hallucinations. By evening, she is having trouble recognizing us. We leave the hospital in such despair and at this moment we don’t know a liver transplant is our only option. We are just holding on to hope the doctors can reverse the damage and fix her. It doesn’t enter my mind at this point that she could die.
Monday she is much worse. Doctors tell us she needs a liver transplant and by Monday night she is on the donor registry, listed as a top receiver. She went directly to the top of the list because she is so sick with just days to live and she is otherwise extremely healthy. Monday’s delirium and hallucinations have mom in and out of consciousness. One moment she is at her old house and needs the keys to drive home and the next she is trying to find money, not there in her bed, to give me since it is owed. She continually wants out of the bed saying ”please take me home now” and “why are you making me stay”. The hallucinations are unbearable to watch. Mom is slipping away so fast and there is nothing we can do but watch. We feel so helpless.
By Tuesday she is on life support. The doctors tell us she has 48, possibly 72 hours to live. If a donor isn’t found, we will have to make the unbearable decision to take her off life support. The longer she is unconscious, the more damage to her brain. I’m thinking, how hard can this be? She has to get a liver. By all accounts, we were told they performed 7 transplants the previous week at this hospital alone. Mom is next on the list. Supposedly, It is very hard. I’m in shock, disbelief, so confused and scared. Mom is not only my mom, she is my best friend and I am NOT ready for this, not yet. She is too vital with so much more life to live. This can’t be happening.
Ray arrives Tuesday night. I am grateful. He didn’t believe the severity with dad’s initial call. How could it be, he felt, when he had just talked to mom days before. He, too, is in shock. He checks in with mom before we leave the hospital. Our departure is rough. We attempt to console each other but we are all struggling to grasp the severity of what is happening.
Wednesday we learn the brain is not in neurological despair yet. We are told we have 48 hours left on life support. The day’s hours go by so fast yet the minutes are so long. We don’t want the day to end without a possible donor and we sit staring at mom’s beautiful face not knowing if we will ever see her awake and alive again. Does she know we are by her side? Maybe our presence will help her fight. The end of day has arrived and we say goodnight comforting ourselves with the positive view that we still have more time.
We are all deprived of sleep, stressed and so scared we are loosing mom. Early Thursday morning the doctors tell us we have 24 hours. This is crazy! It’s like you feel hopeful that 24 hours may bring a donor but you are helpless and realize only 24 hours left before mom will leave us. I am so angry and realize at this point a donor will be a miracle.
Morning hours pass and at 11:30 am, I walk to mom’s room with Ray to join dad, who obviously has something to share. He looks me in the eyes, with a soft voice he says, “we may have a potential donor. “ My body, once filled with stress, adrenaline and helplessness, now feels as if it’s all breaking down and I loose my footing and feel a slight collapse. I instantly break out in tears; tears of relief and joy, I suppose. Ray’s hand rubs my back. Dad sternly says, “stay in check.” We have a potential donor but this does not mean it will save mom.” I don’t want to hear that but as quick as he said it, I snap to reality. We may have a potential donor but there are many factors, many hoops to jump through before mom may survive. She is at the top of the list and has bypassed regional limitations but all the questions loom the future. Will the donor be a match? Will it get to her in time? Will she survive the surgery? Will the liver be rejected? Will she make it through all the possible complications? All the many factors that fill our minds with such fear and anguish.
The rollercoaster journey begins.
We are told the possible donor is a 29-year-old male stroke victim. Our blessings go out to the family and friends of this young man but as a donor, healthy and vital, he will be saving many lives this day. His passing takes place in Long Island, New York, not far from us. We hold on tight to the possibilities while doctors further test for blood type, mom’s current neurological status and any other criteria involved in such an intricate process. From 11:30am into the late afternoon, it is a race against time. We know mom has just hours. I pray Mom holds on. “Please Mom, keep fighting! You can do this.”
There are so many doctors, surgeons, departments involved in transplant cases that for the hours waiting to learn whether she is a match, we are getting screened and informed as if the donor liver is coming our way. The doctors need to make sure we, as a family, qualify for this liver and understand the undertaking and what to expect post liver surgery. In these moments of hope and fear, we are comforted by all the interaction and appearance of positive progress, as if this is real and she has a chance of survival. By the early evening we find with certainty mom is the recipient, the donor liver is on its way and the surgery will take place at 11:30pm. This is more than miraculous. Mom may have a second chance at life, when just hours, minutes ago, she didn’t.
The liver, kidney, heart specialist, neurologist, psychologist, and social worker make up the “Transplant Team.” Possibly more. Not only do these doctors make up the team but they make up the panel, which decide whether mom qualifies for this liver or not. Being in dire need of a liver puts her at the top of the registry but it also is a negative since she is so sick it may not be worth trying to save her with the transplant. She is too close to death. Then there is the glaring factor that she is 73 years of age. However, because of her vitality and great health, she is screened as potential. Because she didn’t suffer chronic liver failure, brought on by alcoholism and hepatitis and a slow disease of the liver and other organs, her organs are in good shape. The possibility of her carrying the liver without complications is great, if she survives the surgery. Mom’s chance of survival is 0% without the transplant and 80% with. We are so grateful they qualified mom.
8:30pm, dad calls to tell us there was a complication. I instantly feel sick to my stomach. He then tells me, it is under control. Apparently we had a nurse mishap with the breathing tube that cost mom a loss of oxygen for 30 seconds and severe stress. “NO!!! Not now. We are so close.
Time is ticking so slowly. 9 o’clock. 10 o’clock. “Hold on Mom.” 11:30pm, scheduled surgery time, they tell us it will be a bit longer. Oh no. Can she hold on? The wait is so difficult. A touch after midnight, we see action. Mom is prepped for transport and is taken down the ever so long, sterile cold corridor to the elevator where we have to say goodbye not knowing if we will see her alive again.
The doctors reassure us she is in great hands and the best thing we can do is go home, get a good night sleep because she will need us in the morning.
The surgery will take 6-10 hours. We are told to keep our phones on for they will call if complications occur and she does not make it, or after a successful surgery. Too soon of a call would mean she didn’t make it. We all know we have to try and sleep but how? Really?
We lay in bed with our phones on. I pray for mom and pray the phone doesn’t ring until they complete a successful surgery. We all eventually fall asleep, I think.
Friday morning just before 7, I hear dads voice and footsteps as he’s running down the hallway, “She’s alive, She’s alive. We jump out of bed with such elation and joy. I am in shock but a “happy shock” if there is such a thing. Or maybe I have been in shock the whole time, but now, it’s not a fuzzy, hard to grasp shock.
We couldn’t get to the hospital fast enough. Mom’s alive, but we know, by no means is she out of the woods. I just want to relish in the moment though quickly snap to reality when we see mom post surgery. She went through astronomical stress to her body, and is in a medically induced coma with tubes everywhere helping her vitals and any complications. Yet, noticeably, she has this peaceful look on her face, and so full of color.
Post surgery. We are now facing our next set of obstacles. Will her body reject the liver? Will she suffer an infection? Will she bleed excessively causing severe trauma? Will she wake up with neurological complications? The longer it takes her to wake the more complications are possible to occur.
The days ahead are a balance of keeping Mom comfortable with sedatives and painkillers but ridding her body of such medication so she can wake. She is on a ventilator and the tubes down her throat are very uncomfortable. She has the discomfort from massive swelling, not to mention the Mercedes emblem like slice they cut down her stomach. Her eyes are eerily opened and drops are used to keep them moist as her mouth is moistened and swabbed.
Her internal bleeding in the body from the blood vessels has to be controlled so they fill her with fluid to maximize the pressure in the outer space to stop the blood seeping out the vessels. If the pressure is greater than the pressure in the vessels, the blood has nowhere to go and not able to fill the body. Instead it will coagulate which helps stop leakage. It is working but now Mom looks like one of those figurine balloons that is half blown up. She looks like she is going to pop and it is very uncomfortable. They eventually get the swelling managed. Meanwhile her kidneys, which I learned shut down when sensing danger, haven’t recovered yet. She is on dialysis, which does the job for the kidneys until they eventually “kick in”.
At this point, She is “dodging all bullets” and seems to be following due course. We just need her to wake. Most complications have been maintained yet it is Sunday and she is not out of her coma nor is she off life support.
Monday, she is slowly coming to and gagging on the ventilator. It is a horrible sight. We don’t want her in pain so she is under slight sedation but we want her to wake. It is such a fine line for the nurses.
She wakes! Mom is with us again. Oh my Lord. It’s a miracle.
Mom is so weak. She can’t move her body. She is semi-coherent and responsive. She comes around and recognizes us but does get confused a time or two. We spend the day with her comforting her telling her it will all be ok.
Tuesday, she is so frightened as she learns how weak she is when the nurses move her to a chair. She has no strength. She’s scared and confused. We start the process of explaining what has happened to her not sure if she is understanding what she has gone through or the seriousness of the events.
Mom tells me she remembers an out of body experience while she was falling ill. She also shares, as she woke, she had no idea what happened, where she was and she could not move her body. She said it was one of the scariest moments of her life. She felt paralyzed. I can’t imagine. Why didn’t we think of that? Dad had cue cards that she can read when she woke to reassure her but we didn’t think to include that she had liver transplant and she is not paralyzed. I wish we had.
Wednesday, mom is improving and Thursday it is time for me to fly back home. I don’t want to leave. I’m so torn but I have to give some attention to life in San Diego. I am comforted by the fact I am going to see my husband and stepdaughter.
July 16. 8 days after liver transplant
I fly back to San Diego and have already made my trip plans back to see her again and help her recovery. Mom has a long journey ahead of her. After the rehabilitation and dialysis in the hospital, she will continue the routine while in NYC. She will have months of home recovery, physical therapy and counseling. By September she can come home to San Diego. Liver transplant patients are on medication for the rest of their lives but can live very normal and fulfilling lives.
August 5th, exactly one month after she was admitted, she is released for home recovery in NYC. She will start the process of healing.
August 5th. Released from Hospital
Mom’s pathology states the cause of her acute liver failure medication, supplement or toxin induced. We are still trying to find the culprit but the doctors are suspicious of her natural supplements or the possible interaction with her prescribed medication. She may also have ingested toxic wild mushrooms but unlikely as of now. We want to find the answers not to just put our own minds at ease but in hopes it helps others who may find themselves in the same scenario.
Mom gave me many gifts that day. She is still with us. What an amazingly strong woman. I now know where I get my strength. Cliché, I know, but so true. She also gave me a renewed life perspective, one of vitality, health and happiness. I realize my time to embrace and live my best life can be dwindling, and I need to make the most of it now. I will continually strive to operate at my optimum level in all aspects of live. After all, Life is short.
I want to thank the amazing “Team” and Divine intervention. Everything lined up miraculously. If mom and dad were in San Diego and not NYC, the outcome could have been very different. Mount Sinai is known to be the best liver transplant hospital in the country. I’m thankful dad was with mom when she fell ill. She thought it was the stomach flu. She insisted she just needed rest. Dad took her vitals and he knew it wasn’t the flu. Doctors said she had just hours left before she would have died in bed.
I’m thankful to the donor family. The fact that the donor was so close was the only option for us. Mom didn’t have time to wait any longer. She had hours left. The fact that the donor provided a healthy liver helped the possibilities.
I’m thankful for my husband who came and provided so much stability, love and support. Dad and I are just so grateful. Thank you Ray.
I will continue to be grateful everyday; for just the sound of mom’s voice fills my heart with so my love and strength. She is a reminder of all good things.
I was signed up for a marathon to take place soon after mom’s transplant. I had concerns with all that was going on. Dad told me you must run for mom. I did and dedicated it to her. She was with me the whole time, especially when I needed her most, the last 6 miles. I was struggling with burning legs and fatigue but if mom can survive a liver transplant at 73, I could surpass the pain. The mental drive and fortitude one experiences when inspired by another’s strength is indescribable. PR 3:18. To you, Mom!
Update: January 2016. Mom is doing ok. Ebbs and flows but the main concern is her kidneys were struck so hard from he transplant they are not recovering. I am being tested to donate my kidney to mom.
Update : February 2016 I am not a match but I am a candidate to offer my kidney as a swap to another in need, and they give us theirs. It is a great program. We have made the top of the list.
Update: April 2016 Mom’s kidney’s have kicked in. They have taken us off the swap kidney transplant program and Mom is just moving full steam ahead.
Update: June 2016 Mom is in full recovery. WOOHOO!!!!!
March 6th. 1st weekend trip. Borrego Springs getaway. Getting better.