Thank you for the overwhelming response, support and love ❤️...
Help me find a liver
Eventually, this will be a travel blog, but in the meantime there is something going on in my life that is much more important than travel.
My health is threatened by end stage liver disease, and I am in need of a live donor soon. I am searching for a special selfless healthy individual, who is blood type O and 5'8" or taller, healthy and is able to be in Edmonton for a month + to share a piece of their liver. Incredibly, the liver is the only organ to fully regenerate and this happens in around one month!
***February 12th Update! The roller coaster continues
The road to a transplant is never a direct one. While in the hospital recently receiving IV antibiotics due to infection, I had an MRI and a CT scan. The results showed enlarged lymph nodes around my lungs. I soon met with a pulmonary specialist who ordered an immediate lung biopsy. I was told it could be any number of things; from cancer or lymphoma, which would drastically alter my dreams for a transplant, to something that could disappear on its own. I waited patiently for a week and found out yesterday that there is no cancer and that it’s most likely an early stage of sarcoidosis, an inflammatory disease (possibly caused by one of the drugs I’m taking), that could be treated with the immunosuppressants (anti-rejection drugs) that I have to take post transplant surgery. A huge sigh of relief with a few tears of joy!!!
Now back to focusing on the transplant! I have faith that we are getting close to my match. There are at least 4 incredible people working their way through testing right now and I hope to know more by the end of February. Not only do we need blood type, size and health match, but a large bile duct is also required. Unfortunately a few have been turned away after the final tests because of not fitting this final requisite. It’s truly the toughest part right now, the waiting, especially for those closest to me. We will get through this together!
Also an enormous thank you to those who have supported and shared my Go Fund Me Fundraiser. This has certainly helped to alleviate some of the future stress involved with the recovery process, both for myself and my (soon to be locked in) amazing donor. The two of us will need to rent accommodation close to the hospital in Edmonton soon after the surgery, with typical recovery ranging from 6-8 weeks for the donor and anywhere from 4-6+ months for me.
***January 27th Update! Sooo many calls ❤️
The live donor clinic received an abundance of calls last week!!!! So many, that they are confident enough that my donor is among them, that they've started a wait list in case the first group doesn't pan out. This is incredible news everyone! It has been mind-blowing to see the response for my story and I hope others in need of a donor can also benefit from my exposure. Now is the time to be patient and stay positive. The testing to qualify to be a donor is extensive and time-consuming. I will keep everyone updated.
While we wait, incredible friends have created a Go Fund Me Fundraiser for myself and my donor during the recovery period. I want to thank everyone for their continued support! 🙏
I got a call from the living donation people and you have probably already heard but enough people have stepped up that they don’t even need me right now, but have me on a list in case no one pans out. So I’m very hopeful that you find a donor that is a match for you. In the meantime, I’m going to pay it forward and have put my name on the anonymous donor list and they are sending me the requisition to get me on their list.”
In need of a liver transplant
a brief history of my journey with PSC
In 2008, I first began having symptoms of a digestive disorder. It began with trouble digesting certain foods, experiencing horrible heartburn and acid reflux. This was followed by massive gallbladder attacks and painful reactions after consuming any alcohol. I was continuously being mis-diagnosed (being told everything from “drink more milk” to “you have cancer”) and saw around a dozen doctors before finally having an ultrasound showing that my gallbladder was filled with stones.
In 2010, I had my gallbladder removed, being told and expecting that this would be the end of my problems. Unfortunately, it was only the beginning as symptoms continued. I was then diagnosed with PSC - Primary Sclerosing Cholangitis, a rare liver disease which is scarring of the liver and narrowing of the bile ducts. There is no known cause and the only cure is transplant. There are more people in Alberta with digestive disorders than anywhere else in Canada.
At the time I was first diagnosed, I was working in the hospitality industry and had experienced discomfort from the kitchen cooking smoke and the dishwasher chemicals, but never connected it until much later. I remember a time where I was unable to eat solid food, yet I was serving big steaks and bottles of wine to hungry guests. I got by on smoothies and juices for a period as it was all I could digest. Soon after, I completely changed my diet, seeking professional assistance from a dietitian and rebuilding my gut. I also completely cut out alcohol and caffeine as my body’s filter wasn’t doing it’s job and I couldn’t process toxins.
Eventually, working in restaurants full-time was taking its toll on my body and I needed to find other work that I could manage with my disease. Photography had always been a passion and that’s when I started my photography company and totally shifted focus. I also prioritized my other passion of travel into life as much as possible, knowing that there could come a time where my health might worsen and I couldn’t travel anymore. So far I have made it to 78 countries.
The disease remained somewhat manageable, but the last 2 years have been especially difficult as my liver has become more scarred and fragile. The forest fire smoke experienced in 2017 and 2018 forced me to spend much of the summer months indoors, close to an air purifier and losing out on much work. I had to even stop using my oven due to fumes affecting my well-being and when I clean the house, I wear a heavy-duty mask. I’m especially sensitive to any foreign chemicals/smoke/car emissions/cleaners etc.
Over these last 2 years, I have spent approximately 4 months (a couple weeks at a time) in the hospital due to infections, having to take IV liquid antibiotics to help liver enzyme numbers get back to my base. During an infections symptoms can include; not being able to concentrate, brain fog, low energy, abdominal pain, jaundice, horrible itchiness and general bodily discomfort.
Most recently, I was in the hospital for almost the full month of August 2019 after a routine endoscope caused pancreatitis and then ascites. My health was so poor that doctors thought that I was going to have to go straight into a transplant procedure, but I recovered.
My liver disease has gradually gotten worse and has progressed to end stage cirrhosis with persistent weakness leaving me mostly housebound and finding it more and more difficult to work.
In 2019, I was put on the liver transplant list.
As far as transplants go, there are two options; a live donor (where half of the liver is taken from a living donor and given to me - the liver will actually regenerate within approximately one month) or a cadaver liver (the whole liver is taken from a deceased donor). A live donor can be scheduled, but a cadaver liver goes to the most in need.
Given my current health, a live donor is the best option. This way we can schedule the operation sooner than later and plan for what’s needed. Otherwise I have to wait until my health is the worst in the region (Alberta, Saskatchewan and Northern BC) before I get to the top of the list. This will take time as my health declines, plus adding much more recovery time and stress on the body.
Here is my post on Social media (Over 6000 shares🙏)
***Urgent Liver Donor Needed***
YOU CAN HELP SAVE MY LIFE.
I continue to search for the perfect live donor for my liver transplant. I thought that I had the ultimate donor (an incredible selfless family friend), but unfortunately during his final tests, the doctors found that he has a rare bile duct system that isn’t a match with mine. This is why I need multiple wonderful individuals doing the testing at once.
You need to be blood type O and 5'8"tall and be fully committed to the process. This involves a series of tests done locally to make sure you’re healthy, followed by a trip to Edmonton to meet with specialists and finally the actual operation would take place at the Edmonton hospital, where you would be required to spend approximately one month. Yes this is a lot to ask, I know, but all I can do is keep asking, and for you to keep sharing, as I know my donor is out there.
With a bit of luck, timing and sacrifice from the right person, I could be gifted a new lease on life and be healthy again by as soon as the summer. I can’t even imagine.
Please take the time and consider this. I know you’re thinking someone else will do it, but if we all think like this, no one will help.
At this point, time is very critical as my health continues to decline.
The first step: call the liver donor clinic in Edmonton at +1-780-407-8698 or +1-866-253-6833 and mention that you’d like to be a potential liver donor for Jonathan Ferguson. They will then send you a requisition to find out your blood type.
The process to becoming a live donor
- After calling the live donor clinic, you will receive a requisition to check your blood type, height, weight and blood pressure. I require any blood type O and ideally my donor should be around my size (I'm 6', 175 lbs) as the taller the donor, the larger the organs and bigger piece of liver that can be transplanted - amazingly the liver regenerates in both parties in about a month!
- The next step is an informative Q & A with the transplant clinic experts who can answers and questions you may have.
- More tests - MRI, ECG, Ultrasound etc. They want to know if everything is working as it should. The bonus is, you get to find out how healthy you are :)
- If all looks good, the final step is in Edmonton at the incredible facilities at the U of A hospital. This is a 2 day visit, meeting with a surgeon, specialist, a dietician and social worker as well as a few more tests.
- Schedule the transplant! Most likely for Spring 2020. They require 2 operating rooms side-by-side.
- Recovery (see video below for more info)