# For Me, CN1 Meant a Liver Transplant — and Learning to Sleep Without Phototherapy Lights

By

Marlin Newswanger, PicnicHealth

Nov 01, 2021 • 4 min read

_Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._

As far as Marlin Newswanger’s parents knew, their infant son was healthy, so they weren’t initially worried when his skin turned yellow. But when they took Marlin to the doctor, they were informed that his bilirubin levels were dangerously high. (Bilirubin is a yellowish pigment in blood that, in excess, can indicate serious problems with the liver.) Marlin was eventually diagnosed with Crigler-Najjar syndrome type 1, a very rare genetic disease that, in severe cases, can result in brain and nerve tissue damage. Marlin spent much of his childhood sleeping under bright lights designed to help reduce the level of bilirubin in his blood. At 19, he had a major surgery that changed his treatment entirely.

When I was living with more of the effects of CN1, my daytime life wasn’t much different from anyone else’s, but during the night I slept under the blue bilirubin lights. It got pretty hot sometimes, and I had to use the air conditioner in the spring and the fall. I made sure no one opened the door to my room in the evening so bugs couldn’t get in because the lights attracted them like a big bug zapper.

If we wanted to travel, we had to take the light along. It didn’t bother me when I was young — my parents took care of it — but once I became a teenager, it was sort of embarrassing. I avoided some trips because of it.

For a while, my parents and I weren’t really interested in a liver transplant because we were expecting some kind of gene therapy or gene repair to come along. Doctors had made it sound very promising. By 2002 or 2003, that had pretty well collapsed. My doctor told us that a liver transplant was pretty much my only option at that point. He recommended we do it sooner rather than later because over time, Crigler-Najjar syndrome damages the liver.

I was hopeful the transplant would improve things, but we were aware it had its own set of problems. We knew it was going to be a major surgery and of course I was sort of nervous about going through it. I was on the waiting list for about two months.

We got the call in the middle of the night and we headed to Pittsburgh, which was about three hours away. The doctors got everything scrubbed and ready, and then I don’t remember much from the next two days. My parents told me it was a pretty long surgery — I think more than 10 hours. It was about three months until I felt recovered. But I wasn’t allowed to play contact sports for a full year, and I was a hockey player, so I thought that was a long time to wait.

Now, I have to be on immunosuppressants all the time. That’s pretty much a permanent part of my life. My doctors try to keep me on as low a dose as possible. Compared to my family, I don’t get any sicker than any of the others do, so it’s not very notable. I might have a little more energy than I did with CN1, too, because it did affect the muscles.

The transplant wasn’t a total cure, but it changed my treatment entirely. I don’t really do any of the things — like sleeping under the lights — that I did before I had the liver transplant. Now, I’m managing a liver transplant rather than CN1.

I actually had a harder time learning to sleep without the lights after the transplant than anything else. I wasn’t used to using covers at night because the lights created a lot of heat. I still don’t like anything clingy. I’d rather have something stiffer, like a quilt.

I was working at my dad’s welding business at the time of the liver transplant, and it was challenging for him when I had the transplant because he was at the hospital with me for a while. It was a smaller business back then, so with me and him gone, that was most of the workforce. It would be great if younger people could benefit from what AllStripes is doing and if there were more treatment options than a liver transplant at some point down the road.

## We know that every person's story is unique and deserves to be heard.

### Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

### Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

### Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

### Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

## Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

## Together, we can make a difference.

### 1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

### 2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

### 3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

### 4. Make time for self-care.

It may seem self-centered to focus on self-care — but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding — which can only benefit your loved one. No one can pour from an empty cup.