Thank you for the overwhelming response, support and love ❤️...
***October 18th Update*** Back in the hospital.
At the end of September, I went to Edmonton to have a cholangiogram which checks to see how bile is flowing through the ducts. All went well and the following day I had my drains removed (which were put in during my second surgery - 10 days post transplant). As we drove back to Calgary, pain began to appear and gradually got worse until we arrived home where I had to lie down. At this point the pain was excruciating. I would later find out it was a bile leak.
Upon being admitted to the hospital, I got on antibiotics, and had a HIDA scan (which takes an image every minute for an hour of contrast going through the bile ducts to determine if there are any leaks). A small leak was found, but on the follow-up HIDA scan, done a week later, the leak appeared to have healed itself. Unfortunately, my liver function numbers have been elevated since shortly after my transplant (puzzling the doctors) so I had an MRI followed by a liver biopsy.
The MRI revealed inflammation in my bile duct and the biopsy showed a small amount of rejection. A few days later my C-Reactive Protein normalized, which shows the inflammation has gone down (I must have had an infection). The rejection will be treated with a steroid (Prednisone) and I'll hopefully see my liver numbers decreasing soon. I will start this today or tomorrow. An ultrasound has also been scheduled for tomorrow.
This is all part of the process and complications are not abnormal. The first year after a big surgery, especially a liver transplant, is constant balancing of medications and immunosuppressants. Hopefully one day this period will be a distant memory, but for now I continue to take things one day at time and one 6am blood test at a time. What a way to wake up!
***September 26th Update*** Almost 3 Months!
Amazingly, It’s already coming up to 3 months since my liver transplant! That quarter year has been the longest and easily most difficult time in my life. A month was spent in the hospital, a month staying close by in Edmonton and most recently, a month back home in Calgary.
When I look at myself in the mirror, I instantly notice a difference in my face - no more jaundice (yellow skin), and I’m showing whites in my eyes for the first time in years. I thought that physically I would feel better than I do, but it will take time and the experts say to expect recovery to last through the first year, with many ups and downs.
I was still greatly affected by the smoke (from US wildfires) last week that blanketed the city. Shortness of breath, brain fog and low energy brought me right back to how I was feeling prior to the transplant. Luckily that only lasted a short time and we’re back to fresh air again.
My liver enzyme numbers are elevated at the moment and rising, which is puzzling the doctors. It may be a little bit of rejection or infection so I’m having a liver biopsy next week. Hopefully they can figure out the issue soon. Ultrasounds last week didn’t reveal much, except for some ascites (some pockets of liquid in my stomach).
Other big news for next week is the removal of my 2 drains which currently hang from just below the right side of my chest. These run through my bile ducts and were inserted after my second surgery (10 days after the initial transplant). I can’t wait to have these things out! Especially since one has dislodged from the ducts and now goes straight into my bowel.
Patience in key. As much as I want to start my new normal, it will take time to get there. I lived with my liver disease (PSC) for over a quarter of my life and my body adapted to it. Now my body needs to embrace the drastic wonderful new changes and adapt again.
I did receive a fantastic compliment the other day from an ultrasound technician. She said “you have a beautiful liver!” I told her I’d pass it along to my brother to whom I owe my new life.
My brother is doing alright. It wasn’t a smooth transition from Edmonton to Montreal and unfortunately he had a few infections in his incision and it’s taking a long time to heal. He has been experiencing many of the same discomforts as me and with both of us having complications, we must remain patient, knowing that it won’t always be like this.
A huge thank you to all who have been supportive this year. We did it! The hard part is over - on to the continued recovery! 💚
A Day in the Life of a Transplant Recovery
August 18th, 2020
Yesterday I shot a quick ‘Day in the Life of a Transplant Recovery’ for those interested in what life is like these days.
I’m now 7 weeks post liver transplant and my focus is on recovery and rebuilding. I’ve come to learn that no two transplant recoveries will be alike, but most will be filled with difficulties, many unknowns and challenges, both mentally and physically. Taking things slowly, day by day is key, while not expecting huge daily results. I have been noticing progress weekly and it’s incredible to see the jaundice gone from my eyes and skin. It will certainly be a long road ahead. I’m 20 lbs less than I was going into surgery, although I’m sure my old enormous liver accounted for a lot of that dead weight!
***July 18th Update*** Road to Recovery!
The last 3 weeks has been incredibly difficult. I was concentrating so much on just getting here and not even focusing on the recovery process. The focus has now shifted and the marathon has begun.
My surgery went well and after a couple days in ICU, I was transferred to the transplant unit. The surgeon took a photo of my old liver and said it was one of the largest he’d ever seen, making the incision larger. My pain was horrific. I could barely get out of bed due to the excruciating sharp and continued pain in my side. It turned out I needed to go back into surgery after 12 days for a ‘wash out’ and get a few external bags connected to drain liquid.
The first couple weeks in the hospital are a bit hazy, filled with awful drug-induced nightmares and discomfort, but things shifted after I awoke from the second surgery. I quickly decreased pain killers to an occasional Tylenol and have been making use of physio therapy to regain strength. My poor bowels have seen both sides of the coin; not enough after the first surgery to way too active after the second, but with the amount of anti rejection pills and meds, things will hopefully sort themselves out.
The care is incredible, nurses are wonderful, surgeons and doctors fine tuning meds everyday, constantly visiting and adjusting for what is working or not.
Sleeping has been awful (as expected), but trying to make the best of food options, treats and new found cravings!
If all goes well, I could be released on Monday to stay in Edmonton for a few weeks while coming into the hospital for blood tests.❤️ Fingers are crossed. It comes down to how my bile flow is doing and if I am released with a temporary external bag or not.
My current pain and discomfort is manageable. When you think about the process and what they have to cut through, it’s no surprise the dull aches and sharp pains will continue for a while.
Liver Enzymes have come down a lot, with jaundice nearly disappearing! Jess has been my rock at my side as much as possible, and I couldn’t imagine going through this without her. ❤️
My amazing hero of a brother and his incredible wife are now back home in Montreal and adjusting to his old surroundings with new discomforts. Going from 22 degree dry Edmonton weather to a humid 33 will also take time to adjust.
As usual we’re taking things one day at a time. Small steps with small victories.
Thank you so much for the continued kind words and encouragement! 💚.
***June 22nd Update*** The Best Birthday Gift ever!
Today is my 40th birthday and there’s only one gift that would make my day.... a new liver.
Shortly after turning 30 and being in pain for a few years already, I was diagnosed with a rare liver disease (PSC). While on the long road to being diagnosed, I had my gallbladder removed due to massive attacks and was told this would cure my pain. I was also told I had cancer (not true) and that I may not live to be 40. I always looked at 40 as a life goal and it inspired me to travel as much as possible in my 30s. Despite being in much pain and discomfort for most of the trips, life continued to get better and I became closer with family, friends and met the love of my life. I also found an amazing liver specialist who told me that I would probably need a new liver by 40. He definitely got that one right!
Now here I am about to receive the best birthday gift ever! Yes friends, after originally having a date of March 28th and then getting put on hold because of Covid-19, this is finally happening! ***June 29th is the date!!!!*** My brother, who was told many times over the past few difficult months that it couldn’t be him anymore because he was out-of-province and too risky to travel has now been given the green light to give me the gift of life.
After going through this crazy roller coaster of push-backs, cancellations, trial runs and changing donors multiple times, I can finally see the light at the end of the tunnel. I’m incredibly excited, but after everything we’ve been through, I’ll believe it when I’m getting wheeled into the operating room and I’ll have the biggest smile on my face!
Time has been running out for me and my energy levels have been very low lately, with horrific brain fog, spending a lot of the day back and forth from bed.
One more week to go! Stay strong, and positive everyone! My 40s will be a new chapter in my life, regaining my health and aging in reverse!
Thank you so much for the continued support and love. ❤️
***May 2nd Update*** Getting Closer
As expected, my health continues to decline. April was a tough month with everything going on, but it did seem to go by quickly, living with our new routine. I continue to get blood tests done bi-weekly, with my latest results now putting me tied with the next in line for a cadaver liver. This means I could get the call to go to Edmonton at anytime for the transplant surgery. My specialist is optimistic that May is the month. Given the living donor program is still on hold, this is my best bet. Time to pack our bags and continue staying patient and positive. One day at a time.... we're getting closer.
***March 29th Update*** A Few Options
Just a few weeks ago we were looking at March 30th for my surgery date… and then Covid-19 hit. My wonderful original donor has now been moved to my backup because he lives out of province. Meanwhile, an incredible friend who lives locally has found out that he's also a perfect match and has moved to the top spot. Unfortunately, the living donor program is on hold in Alberta currently, but when it starts back up, we'll be one of the first in line. Honestly, with hospitals filling up, and numbers continuing to rise, I don’t think they’ll be opening this back up for months.
The other option, which could be my best bet given the situation, is getting a cadaver liver (deceased donor). I’ve been told that for my blood type, I'm in the top 4 on the waitlist, with each of us in a different weight class, thus the size of the diseased donor will determine the recipient. My doctor is confident this will happen for me within the next 2 months, but I could get a call at anytime! The pro here is that I would receive the whole organ with all the bells and whistles, hopefully leading to less of a recovery time. This surgery also wouldn’t involve an additional intrusive surgery for a live donor as well as require a whole second medical team and operating room. The con is that less would be known about the donor’s medical history.
I'm at home now, with my fiancée, only leaving for occasional blood tests or appointments. Energy levels are low, but spirits are high. I’m trying my best to stay out of the hospital, but my doctor thinks it’s inevitable that I’ll be back in soon. It’s all out of my hands right now and I have faith the best option will come my way. To be honest, it’s all in your (hopefully clean) hands - The more physical distancing, the faster we get back to normality, I get my surgery and my life gets a whole lot better!
Stay positive ❤️
***March 22nd Update*** Entering the Unknown
March started with the incredible news that I had a live donor and a tentative date was set for late Spring. Soon after, I was back in the hospital getting IV antibiotics with very elevated liver numbers. This is when Covid-19 was first spreading throughout North America, but panic hadn’t hit yet. Still, the hospital was the last place I wanted to be. All of a sudden the best news came in; the transplant team contacted my donor with a new possible date of March 30th! I couldn’t believe it - overwhelmed with emotion, this was actually going to happen!
And then one of the the worst case scenarios happened. Covid-19 spread and everything was cancelled or put on hold. Right now so much is up in the air with the most dire transplants being looked at on a case to case basis. I am optimistic that it will happen. My feelings remain that sooner over later is still best, and I of course have full trust in the experts. I fear if we wait too long, my health is just going to decrease, while hospitals fill up. Also what happens if I need more IV antibiotics? As much as my immune system is compromised now, after the transplant it will be much weaker and I’ll be on immunosuppressants for life. So many questions, but in reality, I just need to simply remain calm, stay home and take it one day at a time - so really business as usual for me. Of course a lot of my usual, ever-changing symptoms are similar to those listed for Covid-19, but I’ve been dealing with strange unknowns in my body for so long now, I just need to stay out of my head.
Remain positive everyone. Take these times seriously and stay home to help people with compromised immune systems like me.
Love to all for your support! We will get through this together. ❤️
***March 5th Update*** There's a Match!
Incredible news!… Drum Roll….. I have a match! The transplant will most likely take place in May, but this could change depending on how my health goes. The transplant clinic is also continuing to do the workup for one or two other potential donors, as a backup, just in case something needs to be done sooner than later.
An enormous thank you to everyone who shared my story, sent me inspirational messages and supported the fundraiser, especially the 200 amazing people who called the clinic to be potential donors and those beautiful individuals who are completing or have been doing the extensive testing. Wow! The support absolutely blew me away and created such hope. Now I just need to stay as healthy as possible and prepare for the next chapter.
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)