Help Nick with his Liver Disease Battle
$20,005 raised
83% of $24k goal
249 contributors
3 Years running

In 2012, at 24 years old, I was diagnosed with a fatal and rare liver disease called Budd-chiari syndrome. The diagnosis came after many months of painful symptoms, extensive blood tests, ultrasounds, CT scans, and MRI’s. I had developed cirrhosis of the liver and it was on its way to failing.

I wanted more information so I started researching online which, as it turns out, was a terrible idea. Some things I remember… “3 year life expectancy if untreated. If caught early enough can be treated with medication. T.I.P.S. procedure to increase life expectancy. Last resort is a liver transplant.” A transplant? I think I sobbed that entire night in bed. I had no idea what I was dealing with but I knew that it was a complete shift in my life forever.

I was referred to a doctor at Cedars-Sinai and he eventually explained to me what was wrong and sent me to a hematologist (blood doctor) to figure out how I had Budd-chiari and the head surgeon on the Liver Transplant team.

I learned I had 4 different blood disorders that made it so my blood clots more than it should. And as the surgeon later explained to me, unbeknownst to me, blood had been clotting in my veins going from my liver to my heart over a long period of time and it had almost completely closed the pathway off so that my blood had no choice but to return from where it came and go into smaller veins and to other places it shouldn’t, like my oft swollen legs, and into my liver and spleen, causing them to enlarge. and take damage

I was put on medications to see if they could help. I started taking blood thinner injections, pills to reduce my blood pressure and even more pills to help reduce swelling and water retention. While getting used to the medication I started passing out in the middle of the day and it became very difficult to leave the house or do anything as I was constantly fatigued. After 2 months, my hematologist told me the blood thinners were working enough so that more closing wouldn’t occur but it couldn’t do anything for the existing clots. My surgeon suggested I get on the list for the transplant and after many grueling tests in that were both physically and emotionally tough to deal with, I was approved to be put on the list for a liver transplant.

It felt like the waiting game had begun, but I tried to keep up with pursuing my art and also participated in several events for the American Liver Foundation to try and give back. It was a scary time but it was also a time to try and help others who were facing similar issues to me.

Speaking at the Liver Life Walk

On Halloween of 2013, I had the T.I.P.S operation performed on me to prevent large varices that had developed in my esophagus from bursting and bleeding. The small stent they would place would allow my blood to flow better and bring pressures down, but after 5 hours of operation, unfortunately, they were unable to place it.

Post Procedure

I was told I wasn’t a candidate for a surgical shunt and the only hope was to apply for more points on the list to get me higher and get the transplant quicker. Unfortunately, UNOS, the group in charge of organ distribution, rejected the request. After that, I got food poisoning, was admitted to the hospital for the first time and they ended up tapping my stomach and releasing 4 liters of liquid from my belly.

I decided, after getting advice from several people who had transplants, that I should list in another part of the country with a shorter wait time. I chose the Mayo Clinic in Jacksonville, Florida and in January of 2014 I went for 2 weeks to get listed. They were probably 2 of the most difficult weeks of my life. I was living in a house on site with a bunch of other sick people with cancer, heart failure, lung failure and the only time I left was to go to the hospital for tests. The big thing that they stressed was that if I listed there I would need to move to the area to be active and that I also had to have health insurance that they accepted.

Considering that I was unable to work all year I was in danger of losing my health insurance for the next year, so when I came to LA I asked many friends to help me maintain it if they had any jobs they could throw my way and many of them did, to which I am eternally grateful.

When I returned I also had a special procedure where a doctor scoped me to see if I could be a candidate for the shunt surgery thought originally impossible and after seeing the results of that my surgeon decided he could perform surgery on me.

I found myself in the hospital again that June needing another stomach tap and then on July 10 I had a meso-caval shunt surgery to get my blood to redirect itself around my liver straight to my heart. It was mostly successful except I had a lot of water stuck in my body… and later other complications would arise.

I went to the ER twice over the next 2 weeks until I hit a fever of 103 and was readmitted. I was there for 2 weeks and experienced some of the most painful days of my life, the details of which I’ll spare you, but my doctors decided to radiologically place a stent in a major vein that runs through the liver called the IVC. It was still a bit blocked and the widening of it allowed everything to flow more easily. That surgery ended up being a success and almost overnight I lost around 40 lbs of water weight.

After that surgery, with disability money running out, I decided to start working as hard as I could again which quickly resulted in extreme fatigue and a lot of muscle pain. A blood test revealed that I was now experiencing iron and potassium deficiencies. I soon started getting infusions into the new year and those lasted about 6 months. That’s when the source of my iron deficiency was discovered. I had an intestinal bleed and they needed to close it up. I went in for the procedure twice and it was unsuccessful both times.

Iron Infusion

In the midst of that, I developed a case of hepatic encephalopathy over July 4th weekend. This was probably one of the scariest things that has ever happened. Basically, because my liver is no longer processing my blood and pushing toxins out they had traveled to my brain creating major confusion. It became hard to focus, read, concentrate, remember things, even know where I was. It was like early dementia. I had to go to the hospital and get medication for it and it went away for a few days but then came right back shortly after and had to be treated again.

It had put me in a bad place emotionally and after a week out of the hospital, while waiting to go back for another procedure to close up my intestinal bleed I kind of lost hope. Even though I had already been through so much and gotten through it, when it came to my brain and me feeling like I would lose the parts of myself that made me who I am, forget who it was I knew and loved and even how to do basic things like take care of myself enough to remember to eat or to read, I hit a very low point.

The other major battle of this disease along with all of the physical pain is that emotionally, I’ve had to deal with a lot of depression and isolation. I decided to take myself to a hospital for mental health because the weight of everything felt like too much. That was one of the most humbling experiences of my life. There’s a lot of pain in the world and being there gave me a renewed sense of purpose. I knew that I needed to get out and keep fighting despite how difficult it’s been.

I was released from the hospital and was able to go back in for surgery and this time the bleed was gone. My iron was looking normal again.

In August 2015 , I had a hernia surgery. Basically, after last year’s procedure, a hernia formed on my incision that started jutting out and hurting me and we needed to remove it. It’s also been a daily fight to keep my potassium levels normal and my digestion normal, and I often end up in the hospital for one or the other, most recently being on Thanksgiving. I had to retake a bunch of tests to keep my place on the transplant list this month and my next known visit is still pending on December 30th for an endoscopy.

Hernia Surgery

Needless to say, with the amount of time I’ve spent in the hospital I’ve been unable to really work. I take shifts at my very flexible job when I can, but it’s just not enough. Especially with all of the outstanding medical bills I have.

I have not wanted to ask for any help over these past few years. It’s embarrassing and vulnerable to put myself out there like this, but I’m unable to keep doing what I’m doing, and I want to be as well as I can be while I patiently wait for my call on the transplant list. My financial burden is so heavy right now and has been building for quite some time. I need to pay off some existing hospital bills, doctor fees not covered by my insurance, be able to stay on my medication and pay for future procedures.

However you can help, whether by donating or sharing with a community, it would be so appreciated. I know this is a hard time for everyone, and if you were considering getting me a gift for the holidays, please help fund my health instead :) Thank you, thank you, and… oh, yeah, thank you.

With Much Love, Respect & Gratitude,

Nick

Honored by the ALF

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