I lost my mom September 27, 2017 at exactly 3:33 PM. I watched her as she took her last breath, along with my family. My mom fought so hard and did not want to go. Her body just couldn't take anymore.
From the beginning.
In May of 2017, my mom noticed she had gained about 45 pounds in two weeks. I told her she needed to go to the doctor because that is not from eating. My mom barely ate as it was. They found she was retaining water loosely in her abdomen and within her fat in her legs. They were able to drain about 1.5 liters of fluid from her abdomen and did a bunch of testing on it.
Over the month of June 2017, my mom had so many tests done and about 35-40 vials of blood drawn for those tests. My mom and dad were also closing on their very FIRST house. Buying a home was my mom's biggest dream. She finally did it!
July 2017, we found out my mom had severe cirrhosis of the liver due to a genetic disorder. Alpha-1 Anti trypsin deficiency.
My family had no idea about this genetic disorder.
At the end of July, we found out she needed a liver transplant. August 14 and 15, my mom underwent vigorous testing for a liver transplant. We found out she needed a stint put in her heart, but the hospital waited too long to put it in.
September 13, she went to the University of Iowa Hospitals and Clinics for a check-up appointment; they ended up admitting her due to excessive water retention. My mom retained so much water she looked as if she was pregnant with quadruplets.
September 15, they removed FIVE liters of water from her abdomen, she still retained water in her fat throughout her body as well. Later that day her kidneys started shrinking and not working properly. She was admitted into the ICU to start more testing and dialysis. When I walked into the ICU room she was in, she had needles in both hands, arms, and both sides of her neck. Huge tubes connected to her with medicine and blood for the dialysis machine. She ended up getting a blood transfusion as well that weekend. She got better. It was helping. They were supposed to give her the stint, but her blood was too thin.
On September 19, she was moved to a regular hospital room because she was going better. They tried giving her the stint, but her blood was still too thin.
Her best day was September 23, but that turned into her worst night. It was about 10 PM or so when my dad called me crying and freaking out and said we, my sister and I, needed to rush to Iowa City because the doctors didn't know if my mom would make it. When we got there, my mom was bleeding from her mouth and nose. I could see how thin her blood was. It was so thin it looked like strawberry Kool-aid was pouring out. They inserted a breathing tube to help prevent blood from getting into her lungs. My mom was awake during all of this. She was on pain meds but she was fully aware of what was happening. Seeing her like that tore me apart. I tried so hard to keep it together but seeing your mom bleed out profusely. You cannot keep it together.
Two arteries started bleeding non-stop, one going to her tongue. The other went to her thyroid. It took six hours and three teams of doctors to find the bleeds and stop them. They ended up plugging the two arteries. While they were trying to find the bleeds, my mom was getting constant blood transfusions. The doctors were trying to give her blood as fast as she was losing it.
September 24, early morning, about 4 AM was when they stopped the bleeding. Mom was finally sleeping and we were able to get some rest ourselves. We slept in a private waiting room. About 7:30 AM, we all woke up and went to see Mom. She was sleeping, still had the breathing tube in. The morning doctors wouldn't make their rounds until about 8 AM or so. We were told she would be the first one they would check in on as she was in the worst condition. We had left her to rest and went to go get breakfast and coffee. When we came back mamma was awake and the doctors entered shortly after we did. They told us what happened and that they do not know how or why the bleeding happened, but that they were going to keep a very close watch on her for a few days. My mom still had the breathing tube in, kept asking and urging for it to be removed but the nurses — they were great nurses — kept advising that they had to wait a bit longer. It wasn't until about 10 AM that they said they were ready to take the tube out. The nurses asked if we wanted to stay in and said it could be very messy. My dad and sister left the room as they cannot stomach things like this. I can but barely, so I stayed in the room because I did not want her to be alone. They started removing the tube and I had to look down. My mom was coughing and choking, but that is normal. When they got it out my mom's first words were "Ice Cubes." Now if you knew my mom, you would be laughing as hard as I was at that moment.
My mom never lost herself or her personality through out this WHOLE situation. She remained the MOST positive out of everyone. She still was keeping us together.
That evening on September 24, my mom then suffered a heart attack. She survived that. But she really needed her stint. The doctors tried again and her blood was still too thin. This whole hospital stay, my mom was on blood pressure medications. None were working. They kept switching medications, but none worked. My mom has always had low blood pressure.
September 25 and 26 were better but still pretty rough. My mom's heart started acting up, nothing too serious, but when adding to what was already happening, it was pretty serious. At this point, my mom hadn't produced urine in two to three days. Her kidneys completely shut down. They tried dialysis again, but that would make her heart rate drop as well as her blood pressure.
September 27, I was working and at about 9:30 AM my dad calls me crying saying I need to get to the house as soon as possible and that he was leaving the hospital to meet us at the house. I had to rush and pick up my 18-year-old baby brother and life long friend and rushed to Mom and Dad's. Once everyone met there, we made our way to Iowa City. Not one person in that car had dry eyes. We had no idea what to expect.
We got to Mom's room. She was making whining noises and talking to people who have already passed away in our family. She was talking to my grandma and grandpa. There were times she forgot she was in the hospital and thought she was at home. But if you talked to her, she snapped out of that and knew what was going on and who she was talking to. Mom was very irritable though, but who wouldn't be at this point? My aunt, uncle and cousins show up to see Mamma as well. When talking to Mom, she still was so positive and said over and over that she wasn't going anywhere. She wanted to badly to live.
At about 11 AM, they started dialysis to see if they could get the kidneys to work again. This time, she would not be taken off of it. After so long, it didn't look do be helping.
The doctor came in to speak with us. He said that she would only have a 2 percent chance of surviving, and if she did survive, she would also need new kidneys as well as the liver. My mom's heart was also having complications.
After about three hours or so of dialysis, my mom started yelling in pain, screaming "It hurts, it hurts" and "help me, help me." I asked her where it hurt and she yelled, "Everywhere." She then looked me in the eyes and said, "Help me, Taylor, help me." I never felt my heart break into a million pieces and hurt so much in my life. Knowing I could not do a damn thing to help her tore me apart and at that point I held my mom's hand so tight and broke down crying.
The doctor confirmed that dialysis wasn't helping at all and reminded us of the 2 percent chance she had at surviving the day. As a family, my sister, brothers, dad and I, we decided that is was time to slowly take her off of dialysis, the blood pressure meds, the heart meds, and then give her pain meds and help her get comfortable. I never thought I would hear a doctor say "We will make her comfortable" about my mom. Because when they say those words about your loved one or pet, you know they are not coming home with you ever again.
We all waited by my mom's bed as they "made her comfortable" and spoke our last words to her and told her we loved her for the last time. We all watched Mom slowly fall asleep and take her last breath. On September 27 at 3:33 PM,my mom passed away.
Had I known Thanksgiving and Christmas of 2016 would have been our last together, I would have done so many things differently. I would have done the last year differently.
My mom had a tough adult life. She lost her oldest son to SIDS when he was eight weeks old. I remember struggling and moving every two to five years growing up. My mom and dad tried so hard for us and gave us what we needed even when they couldn't afford it. My mom deserved a better death. But instead she struggled to survive in her last days. She went through hell and back literally. She experienced tremendous pain and suffering. I know she is in a better place now and no longer suffering. But I think it is so unfair that my mom, who was only 58, passed away so quickly and unexpectedly yet there are horrible people living to be 80 something years old. The good truly do die young.