As a cirrhosis patient I am so thankful for the medical professionals who saved my life when my body failed. They truly worked miracles on my behalf. As I think about my experience, however, I’m reminded that they are really people just doing their job. They are paid to do what they can to keep me alive. The unpaid heroes who gave of themselves and poured their own life energy into saving me are the ones that I am most thankful for. Sadly our society places too little value on caregivers.
The first time my mother took me home from the hospital, I was an infant. She’d been able to prepare for that though; learning how to take care of the needs of a baby by reading books and taking classes. She had support, with a wide network of family and friends available who knew how to do that type of caregiving, to answer those late-night questions and offer helpful tips. But when she took me home from the hospital after my cirrhosis diagnosis, she was much more alone. Overwhelmed, overworked, and unsure of what I needed. There were no books, there were no classes, and she knew no one with cirrhosis that she could reach out to for help. Suddenly she had to become a new kind of caregiver, for her grown-up daughter, with no knowledge of what I even needed to survive.
I always refer to the moment of finding out that I had cirrhosis as, “when we got the diagnosis.” Not, “I,” but “we.” Because with cirrhosis, the diagnosis doesn’t just change your life – it changes the lives of your loved ones too. Especially the one/s who are tasked with caring for you.
For us, the impact of my diagnosis was felt in so many ways, from many different directions, by everyone in my family.
- I was hospitalized with liver failure in my hometown hospital. During the 11 days that I spent there, my mother had to try to balance her time between being there for me, and being at home to take care of my daughter. I’m a single mom, and at that time my daughter was only 6-years old. My mother would spend the night with her, get her to kindergarten in the morning, then come check on me at the hospital. Day after day.
- Then I was moved by ambulance to a much larger hospital 3 hours away from home. My mother came to stay with me there for weeks, as they did a biopsy to identify cirrhosis, as I went through dozens of other tests to determine cause, and as they tried their best to stabilize me.
- While I was away from home, my brother back at home had to help, by getting my daughter to and from school, and staying with her when she wasn’t with her dad – while still juggling the needs of his own busy family and business.
Everyone had to disrupt their lives and livelihoods, overnight, as they pulled together to take care of the details of my life, while I fought hard to simply stay alive.
My mother remembers, too clearly, the moment when the hepatologist gave me the diagnosis, and how her stomach dropped as the doctor told her that the biopsy showed Stage 4 cirrhosis. He assured her that stage 4 cirrhosis was not like stage 4 cancer – there wasn’t really any treatment, there were no drugs to fix it, and no surgeries to try, but there was hope.
I’ve often thought that my mother’s job as caregiver had to have been so much more difficult than my job as the patient. Between hepatic encephalopathy episodes that clouded my thinking, all of the medications that I was on that made me drowsy, and just my overall weakness and exhaustion – all of my memories in the hospital, and even the first few months after coming home, are hazy. As a mother myself, knowing that my mom had to sit by my bedside, in hospitals and at home, not knowing how to help me get better, not knowing if I would pull through, is absolutely heartbreaking.
And, since I am a mother myself, my daughter Abby had to endure far too much, as I fought my way back from liver failure. She missed me terribly while I was in the hospital; but when she would visit me, she had to see a mommy hooked to dozens of wires and tubes and machines. While I was in the hospital away from home, I didn’t get to see her at all, for weeks. When I finally was able to come home, we had to make our home at grandma’s house for a while. She didn’t understand why I couldn’t get up and play, why sometimes I didn’t make sense, why I was so skinny and looked different, why sometimes ambulances took me away late at night. It’s been over 2 years since those dark days, but the ordeal still affects her greatly. She has trouble at school, because she worries about me alone during the day. Since it’s just the two of us at home, she feels a burden to care for me – even though I tell her, daily, that caring for me is not her job. It wears on my heart, knowing she carries this big burden of concern, that’s far too heavy for an 8-year old girl. But she has seen how bad things can get, and I can’t erase that from her mind. I can’t promise her “everything will be ok,” because cirrhosis is a tricky, unpredictable disease. So, I just promise her that I will always fight.
It is so strange, for life to come so full-circle. 38 years ago my mother brought me home from the hospital as a fragile infant –this time she was bringing me back to my own home as a very fragile cirrhosis patient. She and my brother had to make my home “cirrhosis-proof,” much like my mother once baby-proofed her home. They installed grab bars and a shower chair in the bathroom. My mom bought a commode for my room, for times I was too weak to even make it to the bathroom. I had to use a walker, due to the muscle wasting and neuropathy, so halls had to be cleared and furniture re-arranged, so that I was able to easily navigate my own home. So many changes.
I’m incredibly lucky that my mother had the dedication to drop everything and be there for me. She had retired, less than a year before I “got sick.” But she also worked several part-time jobs to supplement that income. So, devoting herself full-time to caring for me meant that she couldn’t work – but she still needed to pay her bills, as well as my own. We almost lost the house, until an angel of a friend started a GoFundMe that got us through those months before my disability was approved. I don’t have to imagine what it would have been like, to not have a village to rally around me when I was most in need; I’ve heard the stories from way too many patients, of bankruptcies and tragedy, when a sudden illness strikes. Cirrhosis is a very tough disease to live with – but thanks to the amazingly caring people in my life that support me, I’m blessed to have a team that’s even tougher. My heart goes out to all of the caregivers who do their best for the loved ones in their lives and I am saddened when I think of all the patients who struggle without such a support system.
