Local woman’s experience through illness, transplant and the journey forward

“Believe in miracles, we are all miracles.”

In October 2014, 41-year-old, Cindy Hoffman, was told by her doctor that she was dying. She had been diagnosed with stage four end liver disease, a type of cirrhosis, and non-alcoholic steatohepatitus (NASH). The only thing that would save her would be a liver transplant.

It would be over four years until she would receive the call that would save her life, they had a liver waiting for her in Edmonton. The day was Dec. 21, 2017 and the transplant was a success. Now, nearly a year since the operation, she is still dealing with the devastating affects the liver disease had on her system and organs and at some point in the future, will need her kidneys replaced.

In July, 2014 Hoffman was frequently nauseous and continually vomiting, getting progressively worse to the point of being only blood. Her daughter rushed her to the emergency room where, after many questions and tests, it was decided that she would need a liver biopsy, which was then scheduled for Sep. 30. Two weeks later, Oct. 15, the doctor called to tell her she would die without a transplant.

Her liver had essentially fossilized, and was working at about three per cent of normal function; doctors determined that the process had started when she was about 14. No previous blood tests or routine ultrasounds prior to this diagnoses had ever alerted doctors that something might be wrong with her liver. Doctors referred to it as silent liver.

“Nobody else in North America had this at the time, I don’t know if they do now. I kept having to throw up all the time and I didn’t know why, and they didn’t know why,” Hoffman said. “Silent liver is what they called it, I don’t know if that’s the exact name of it. Blood tests will show a slight elevation, but as the liver is killing itself, it looks like it’s still being good. And then one day it just shuts right down.”

She was then faced with telling her husband Darren and daughter Mikayla that she had been given a terminal diagnoses. Due in part to her rare blood type and her liver being a very hard match due to health complications, it was over four years until she finally got a new liver.

“I was at home by myself and thought ‘are you kidding me how am I supposed to tell my husband and daughter this?’ This is brutal. It’s not just about a little bit of a sickness — ‘you’re dead if you do not get a transplant.’

“I never thought in a million years I was going to get it because it was four years and nobody else had to wait like that, everyone was six months to a year. The most it normally could be is up to two years, not four like me. I’ve gone way beyond what most people have gone through, so that’s probably why they call me a miracle. I don’t even know why, but I don’t think I’m a miracle, I just want to tell my story and I want to make awareness.”

In the years leading up to her transplant, Hoffman dealt with a barrage of procedures and unbearable sickness. There were countless blood tests, albumin and blood transfusions, frequent trips to Calgary for appointments with a variety of specialists including, gastroenterologist, counsellors, hematologist, social worker, Neurologist and Hepatologist.

She had MRIs, cat scans, scope tests and also ECG tests on her brain and brain scans. She had ascites of the abdomen drained — an abnormal accumulation of fluid in the abdomen due to liver disease These were very painful, with the largest removal being 15 litres in one appointment.

One of the most memorable times of the sickness pre-transplant, due to its irritating and painful nature was the experience with the feeding tube. Eight gruelling months with it inserted through her nose to the stomach. She explained, “if I could’ve, I would’ve ripped that thing out, but unfortunately, I had no choice. I made a decision to fight to live and getting fed kept me alive.”

Then on Dec. 20, 2017 she received the call that would change her life, she was granted a liver transplant and doctors were ready for her. She had to get to the hospital immediately to be flown to Edmonton and then transported to the University Hospital where her transplant was completed in the early hours of Dec. 21. Though the transplant gave her a new chance on life when things looked bleak, the recovery has been a trying process to say the least.

Every organ in her body, and especially her blood, have been negatively affected. She’s dealt with rejection of the liver three times. She’s been through countless appointments; in April alone she had 20. She had severe ammonia in her brain due to the disease, encephalopathy, that has caused her to lose a substantial amount of memory over the four years and now, potentially permanent short term memory loss.

Hoffman still sees many specialists due to the permanent damage the liver left behind. Now, it’s not a matter of if but when she will need her kidneys replaced. Though she is still dealing with the repercussions of this devastating illness, and despite how much she’s already been through, Hoffman has remained relentlessly positive throughout the entire process.

“I just want people to be well. I don’t ever wish anyone to be sick, I’ve been sick enough for everybody in the world. I’ve taken a lot of hits, but I’m still here, still happy, still smiling.”

Hoffman now intends to write a book that will detail her own personal experience, and serve as a potent warning about liver disease, and the importance of paying attention to one’s health.

“I want to tell my story because I went through so much and I made it. I want to tell people that because I did this, anybody can survive just about anything. If you put your mind to it, try, try your best. Make sure you go to the doctor, make sure you’re eating well, and make sure you’re not drinking your face off or doing drugs or all those things. Just look after yourself, and if you happen to get sick, go right away to the doctor.”

She adds that she feels very strongly that everyone who can be a blood donor should be. As she has such a rare blood type, it is critical for everyone to know their’s and donate when possible. She also stressed the importance of organ donors. She wouldn’t be alive today without one.

Hoffman’s word that she’s used for motivation, survival and her mantra is “Believe.” She also developed her own quote: “Believe in miracles, we all are miracles.”

A Gofundme has been set up for her kidney transplant at the link here.

 

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