My Mental Health Post-Transplant

Being in and out of the hospital and unable to recognize my own body was taking a toll on my mental health. But after my liver transplant, my family stuck by my side and helped renew my positive outlook on life. 

| 7 min read
Tania Romero
Tania Romero
Tania laying in her hospital bed after transplant.

This blog discusses suicide and suicidal ideation, and some people might find it disturbing. If you or someone you know is suicidal, please contact your physician, go to your local ER, or call the National Suicide Prevention Lifeline at 800-273-TALK (8255). The program provides free, confidential support 24/7.

My journey with cystic fibrosis hasn’t been an easy one. I was diagnosed at 3 months old with a sweat test. My CF diagnosis provided my parents answers to why I would keep getting sick. But I can say that I didn’t really understand the illness until I searched online and asked my doctors questions. It was only then that I began to understand how cystic fibrosis can affect someone over time. 

I started developing different CF complications and, at age 12, I was diagnosed with liver cirrhosis. I couldn’t believe that at such a young age I was being told I had to be more careful, and I couldn’t play any sports. It made such an impact on me mentally. But I’ve been told all my life to take care, so it wasn’t very new to me. 

As years passed, I started getting sicker. At age 18, my liver began scarring and my spleen was getting enlarged, so I was in the hospital more often. At this time, I even had seizures and got sepsis a few times. By the time I was around 20 years old, I knew that mentally I was not okay. I told my mom I needed to get help because I wasn’t happy with myself and how life was going with my health in decline. Being unhealthy is very exhausting over time, but it’s just something you get used to. Plus, I never knew anyone else who had CF. It’s hard sometimes because as a Hispanic, I want to have the opportunity to connect with other Hispanics with CF who can relate to my experiences.
 
I remember pretending to be so positive, but I would always hide how I truly felt or what was going on inside my head. I would do that because I knew my family would look at me as their strength — if I was happy, they were happy. At this point of my life, I really wanted to die because I didn’t feel well and I was in pain. I would just lie down and sleep, but my body felt weak and it would hurt. I can’t forget how bloated my stomach would get and how swollen my body was. Mentally I wasn’t okay, and I couldn’t adjust to my body looking the way it did.

All I remember was telling myself, “This isn’t me. Who is this person? It’s not your fault. You are pretty! Right now, we’re in a storm but we will overcome it like we always do.” I say “we” because it’s always been me and my family since day one — they’re my backbone.

I remember this day as if it was yesterday, I got a phone call at 5:30 p.m. saying, “Hello, Tania, we have a liver for you, it’s a big day for you.” I was shocked, but excited — I felt like God had finally heard me. My family was scared because I was going into surgery that night. I remember going back to get ready for surgery and telling my mom, “If something happens to me, you guys need to be strong and keep doing what you guys do. I love you guys.” We then just prayed — it was going to be a 6–10-hour surgery. 

I wasn’t scared to die, I’ll be honest. I feel like having a chronic illness makes you strong and understand how life works. It makes you fearless of death. So, I liked talking to my parents about death because it’s a reality of life and how close I had been to death so many times. I just wanted them to understand and feel less pain. I knew there were other deaths in our family, but this time it could be me, their daughter. I knew it was going to feel different for them. 

I remember waking up from my surgery and having to pass all the requirements to go home. I pushed myself from the day I woke up because I know God gave me another chance to live. I was out of the hospital within a week.

I thank the person who gave me their liver, I pray for them and their family to have strength, peace, and hope. Without that person I wouldn’t have had another chance in life.

Once I got home, I followed all the rules and walked around the house little by little using a walker. My family helped me out a lot. It took almost three months for me to graduate from the walker to walking alone — slowly though, because I would still get out of breath. After two more months I could finally walk at a normal pace — and I had just turned 22 years old. 

That December, I went to the hospital because of my liver. During this time my mental health was a little better, but there were days where I felt like things were going backwards. The following May, I fell back into the hospital because my stomach wasn’t feeling too well. I got a biopsy and they found out that I had an acute liver rejection. I was really worried and got overwhelmed. How could this be happening? I felt very sad, like I had never felt before. All I did was cry and pray to God to, “make me stronger and more patient and I know that I can overcome this and I would go home soon.” I got sent home after two weeks, and it would take two more months for my liver numbers to get back to normal. 

These past two years I really put myself first for the first time. I want to say that after my transplant I felt happier than ever — even If I was dealing with these problems after receiving my transplant. My family was the reason I got through these tough times because they never let me go. I went to talk to a counselor to get the help I needed, and I was finally able to move through the feelings I had been keeping inside since I was a little girl. 

One thing I learned through this process was that you will always have your family and you can never give up in life or yourself. This experience renewed my appreciation for life. I’ve always said to stay positive mentally, physically, and spiritually.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Tania Romero

Tania was diagnosed with CF at 3 months old with a sweat test. She is Mexican and was born and raised in Michigan. Tania is excited to finally be able to speak about her experience with cystic fibrosis and how it has impacted her both mentally and physically. You can connect with Tania on Instagram and Facebook

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