Natalie’s Caregiver Story

Hi, I’m Natalie and I want to share my story as a transplant caregiver for my wonderful mom.

It’s hard to imagine what life was like before my mom was sick or before she needed a double lung transplant.

My mom, Tammy, started getting sick when I was in middle school and went through a slew of tests, attended countless doctor’s appointments and missed dozens of days of work. She was given diagnosis after diagnosis until her pulmonologist finally delivered a fitting diagnosis; idiopathic pulmonary fibrosis.

Now, I don’t want to spend too much time on my mom’s story (this is a site for caregiver’s after all), but for the years following, my mom continued to get progressively sicker until she received the grim prognosis in 2015: “You need two new lungs or you have about 6 months to live.”

So that was a shock. Thus, with a bang, I was thrown into this journey as a transplant caregiver at the ripe old age of 27.

There was definitely a learning curve. At the time, I was in grad school. Luckily I lived close to my mom and though I was busy with grad school, my job as a dog groomer allowed me to make my own schedule, which was great because I could go to appointments with my mom as needed.

After the prognosis, my mom had many doctor’s appointments at her transplant hospital. I attended most of these appointments with her, including informational sessions with a transplant team. As a caregiver, it was important that I understood the process and my responsibilities pre and post transplant.

• Notifying my employer, clients and professors that I needed to have my phone on me at all times and may have to leave at a moment’s notice.
• Packing an emergency bag to keep in my car. This had extra clothes, basic toiletries, spare phone charger, a book, playing cards and some nonperishable snacks.
• Preparing a phone tree: This started with me calling a family member, they’d call the next person on the list, and so on. Everyone was notified beforehand so they knew exactly what to do.
• Having a list of emergency numbers and contacts both locally and at the hospital.
• Fundraising for pre and post-transplant expenses, which you can read more about here.

After a couple of months on the UNOS list, my mom got the call. We hurriedly made our way to Indianapolis, waited for preliminary testing and were then told that the lungs weren’t viable. A dry run.

We were disappointed as we made our way back home but remained optimistic that another call would come soon.

The next call came in March 2016. By some miracle it was a pretty humdrum day where neither of us were doing anything and I was already at her house. When the call came, it was if the world stopped momentarily.

That pause in the earth’s rotation quickly wore off because we only had 4 hours to get to the hospital, which was just over 2 hours away by car. My mom and I were both prepared with our bags already prepacked. I got the phone tree started. We grabbed snacks (snacks are always a very important part of preparedness in my family) and we hit the road.

The excitement was palpable. Nerves, inexplicable. But we were on our way.

When we first arrived at the hospital, my mom had to have pre-op tests done and was put into a typical hospital room. Meanwhile, the transplant doctors and nurses were assessing the donor lungs to make sure they were viable and a perfect match.

After all of these prelimary things were finished, they took my mom to the OR and I, along with my friend and family members, went to the waiting room where we….waited. And waited. And then, we waited some more.

Finally, the phone in the waiting area rang. It was for me. The doctor informed me all systems were a go and the lungs were a perfect match. He put my mom on the phone, she mumbled some incoherent nonsense (she had already been given some meds), an “I love you,” and I hung up the phone.

At this point, there was another waiting game. The surgeons would call with updates when possible and the surgery lasted nearly 11 hours. This isn’t the typical amount of time but due to a previous surgery, it took them a bit longer to get one of the new lungs situated.

During all of this waiting, it was great to have a support with me. If possible, I would highly recommend having one or two people with you during the surgery. They definitely help keep your mind occupied and your nerves at bay, even if it’s just a little bit.

The 6 months post-transplant did not go as expected. She suffered from many complications and was in the hospital for most of those 6 months, so for this part of the caregiving journey, I spent many hours in the hospital with my mom trying to keep her spirits up; watching movies, reading books, telling stories and trying to tempt her with, you guessed it, snacks.

For the first 2 months, I continued to commute back and forth 2 hours each way for grade school and work. Eventually, I had to give up my job because it got to be too much. Some of the fundraiser funds came in handy at this time for things like gas and food. Unfortunately this also meant I had to use a credit card, which I do NOT recommend but I know sometimes it’s the only option.

Post transplant also consisted of taking my mom back and forth to her physical therapy classes and doctor’s appointments and talking with the doctors and nurses about her progress. My sister helped with taking notes so we could document my mom’s progress and look back on everything.

Something I would definitely recommend is to remember to take time for yourself. I got so caught up in taking care of my mom that I let my own physical and mental health take a huge hit. Accept help from those you trust and remember that it’s okay to take a break and do something you enjoy. Self-care is so important.

Every transplant story is different and there’s no way to know what will happen. Having support and a plan are super important during the transplant process and can be beneficial if anything unexpected happens. Being a transplant caregiver was, and continues to be, a life changing experience.

Do you have a similar caregiver story or questions about my story? Want your story to be featured on Transplant Caregiver?

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