Hello my dear family, friends and friends that I have not met yet. Thank you all for being part of my “Believe” team that gives me the will to strive to survive. My name is Cindy Hoffman, I am the survivor of my recent liver transplant and I personally decided to write my journey for my Go Fund Me fundraising page. I am doing this because I own my story and a story is best told by the person that experienced what you will be reading in the story below; I am the survivor and I always Believe.
So much has happened over the last four years (and the journey still continues), I have decided to shorten the story, but I will share everything so that you might understand it all. I will start my story back on July 3, 2014. In point-form, these are the events that made a new chapter in my book, my journey, called life. And so it started…
- Upon waking, a sudden urge to vomit came over me. Time after time it kept happening, each time the water in the toilet bowl became darker red; filling with blood. I immediately called our daughter Mikayla to pick me up and get me to the ER. This was nothing that I had ever experienced before.
- Admitted to the ER, I was examined eventually by a female Specialist Physician of Internal Medicine. After many questions, observations and tests, she decided that I would need to have a liver biopsy because my liver tests were very, very high in numbers which had not been in any previous routine blood tests before. I asked questions but there were no answer’s until the biopsy came back. And so it began…the next chapter in my journey where I really learned the true meaning of the word; the word that I live by and pass on to others daily, “Believe.”
- I was scheduled for the biopsy on September 30, 2014. Ten days later the results were to be back; nausea and vomiting were still present during this time. I never thought anything would show in the biopsy.
- On October 15, 2014, I received the news from a telephone call (yes a telephone call!) from my doctor. I was diagnosed with Stage Four End Liver Disease, NASH (Non-alcoholic SteatoHepatitis – a severe form of non-alcoholic fatty liver disease); there was nothing they could do to save me, I was given the terrible news that I was dying at the age of 41 years. The only medical procedure that could save me was a full-liver transplant. My liver had literally fossilized and was only working at about 3%. No blood tests or routine ultrasounds prior in my life had alerted that anything was ever wrong with my liver; only a tiny bit of fatty tissue that was never again followed up.
- Tears and emotions literally took over my being. I cried and cried. I just got told I was dying! Dying. I wasn’t ready to die. I still had so much to do in life! I had to tell my dear husband Darren, our beautiful daughter Mikayla, family and friends. Something I never even had a clue how to do, but I found my way and I did it.
- The journey and another chapter began and for the next four years my life became everything that I never imagined; I was going to take these years, without a choice, to prepare for transplant. Calgary, Alberta and the Foothills Hospital became my second home. In the north tower, where what I call my ‘Believe in Cindy Medical Team” was located, is where I attended many appointments and procedures over the years. My Believe in Cindy Team became my family. They were the best support team besides my family and friends and even strangers that found their way to me too. (The power of Facebook, word of mouth and other internet programs was evidence to how much coverage I received about my disease.) These people would become my supporters and they continue to follow me and support me now.
I decided that listing everything was easier to give you a good grasp as to what I have endured and suffered with through the journey of pre—transplant. In no particular order and please keep in mind that most procedures were horrible and very painful and tested my strong and positive spirit daily.
- Blood tests, intravenous lines, albumin transfusions (a blood product), blood transfusions, hospital stays, counselling sessions, GP appointments, multitudes of trips to Calgary for appointments including Gastroenterology Specialist , Malnutrition Specialist, Psychiatrist, Social Worker, other Specialist’s etc., Ascites of the abdomen drained, (Ascites: an abnormal accumulation of fluid within the abdomen.) There are many causes of ascites, including cirrhosis of the liver. My biggest accumulation of fluid in the belly, which was very painful and took very long to drain, was the removal of 15 litres in one appointment! MRI’s, Cat Scan’s, Scope Tests, banding of varices in my esophagus (tiny fluid filled sacs that can start to bleed and will not stop) and ECG tests of the brain. An extreme amount of randomly called blood alcohol tests, and yes I passed every single test with flying colours or I would’ve been pulled off the transplant list. A trip to Edmonton for my initial meeting where tests were done and many appointments with Specialists and Surgeon’s to learn about the transplant process; all of which we stayed a week to learn. Most likely there’s many more appointments and procedures that I have missed. As you have just read, I have been through a great deal pre-transplant.
Fast forward to December 20, 2017, which was the end of my first chance at life AND the day that changed everything…
Edmonton, Alberta was calling me; it was exactly 10:47a.m. This is when it all changed; it was THE CALL! The call that gave me the best Christmas present ever; I was granted a liver transplant and they were waiting for me! I was the get to the hospital right away, an ambulance would transfer me to the Cranbrook Airport and the BC Medical Team would be there to transport me to Edmonton where an ambulance and Paramedics would greet me to transfer me to the University of Alberta Hospital where my transplant would take place.
Upon arrival I was greeted by my Coordinator to complete paperwork, blood tests, x-rays, and many other specific tests for the transplant. Unfortunately, at 5:45 p.m., I was going to head to the ER. All I could think about was the fear of leaving to get the transplant without ANYONE there by my side, so I immediately called Darren and Mikayla and via Bluetooth in the truck I said my temporary goodbyes and I love you’s and I was off to the ER where the transplant started to take place at exactly 6:00 p.m.
Six and a half hours later I awoke in the Intensive Care Unit. I spent one and a half days there and was moved to the Post-Transplant ward. I spent a total of three weeks to the day there; each day striving to walk those so many steps more, eating better, exercising in Physiotherapy, ending many tests everyday including blood tests, Echo on my heart, Cat Scan, Ultrasounds, biopsy of the liver and many more as my blood test results came to the doctor’s attention. With that, I must’ve had my pill doses changed 20 times! Every day, something was out of whack with my blood, which added more tests seeing more doctors that specialize in whatever organ that was being affected. I think about the first few days post-transplant and how I was so happy that I was going to have to take ONLY six pills a day compared to the nineteen pills per day pre-transplant. Since then, I have had many adjustments to the pills and now take a total of seventeen pills/liquids per day post-transplant and are very expensive to the tune of approximately $600.00 plus each month and that is paying only the 20% we are required to pay as we have extended medical that pays the first 80%.
When I was finally able to get my head straightened out to reality I was faced with the reality of the cost that the transplant was going to place on Darren and my lives. We now had two of everything to pay; including two homes, one mortgage and one rent, hydro and insurances. We also had to pay a caretaker for our home in Cranbrook to mind our two beautiful miniature dogs, feed our two horses, keep our wood heater burning for heating the house and all aspects of day to day household jobs. In Edmonton, we were faced with having to rent a hotel room by the month which was very expensive but Darren was unable to find a furnished apartment available from month to month, plus he needed to be close to the hospital. Groceries were needed, insurance for the truck, maintenance for the truck, and fuel. Clothing needed to be bought for Cindy as she started swelling due to the surgery and medication about 10 days post transplant. Larger sizes had to be bought a total of five times by February 25, 2018 and it was expected that even more times were to follow due to the swelling worsening and the Specialists were not able to control it. Day after day, expenses needed to be paid and funds were dwindling from the transplant account that we had faithfully saved funds for from the beginning. One of the largest expenses was that Darren could not receive wages because he wasn’t able to get coverage to look after me; I needed a 24 hour a day caretaker to be with me waking hours in the hospital to support me and then 24 hours a day after release from the hospital. Someone to chauffer me to appointments and attend them with me to take notes and ensure that everything was heard by both of us, especially medication changes, push my wheelchair, assist toileting, showering, dressing and all other aspects of life that I could not do on my own. Darren being off work without pay has cost us thousands of dollars every month.
During the first week of post-transplant, my liver went into rejection! I cannot explain how it made me feel because the emotions are some that I had never experienced. Four days later, I was hit again, I was back into rejection; the devil hit once again; thankfully it subsided by the following day.
My days were filled with many procedures that included being poked by needles, numerous intravenous treatments, changes with pills; adding pills and/or changing doses, physiotherapy workouts, long walks to the indoor garden, meetings with the Dietician, Coordinator Nurse, Doctor’s, ultrasounds, teachings about all the medications, Pain Management Specialist, x-rays, Physiotherapist, Occupational Physiotherapist, many days spent being very homesick and sad, and other random instances that arose as the days passed by. Finally, on January 26, 2018, after many discussions with the doctors, I was granted my ticket to Calgary; my second home away from home, where my family, my “Believe in Cindy Calgary Team” was located, my brother and his family, my dear friends that have been there from the beginning of my sickness for moral support and more, and Calgary is only three and a half hours away from my hometown, Cranbrook, our home sweet home.
So far up to today, March 5, 2018, my time is filled with; two days plus per week taking blood appointments, some testing completed at Foothills Hospital and others throughout various places in the city, filling medications, grocery shopping and all other aspects of daily living. It has been a very long, hard road post transplant with all of the things that I have endured so far and continue to endure with the excruciating swelling that my body is experiencing. Many medical items have needed to be purchased due to the swelling including a toilet riser, custom compression stockings that go to the top of my thigh that I have now outgrown and now I’m going to require another custom pair which will be fitted tomorrow. I have also had to buy an appliance to help me get the stockings on, which was another expense. I also have been required to purchase compression shorts and also a compression bandage for my abdomen (all of which will prevent blood clots). The future will encompass more expenses; many that will be required for life to keep me alive. It’s amazing the weight that money puts on your life day to day in order to survive. Most would never even think of the on-going costs, but they do not quit because I will always be sick, I am a full-liver transplant survivor that unfortunately will need to rely on funds that are raised through my Go Fund Me account for at least the first two years. In April alone, I will travel to Calgary on THREE different occasions; each on three different weeks for appointments as they could not be partnered due to the days the specialists offer clinics to see patients.
The following I wrote expecting that my proofers of the story would remove this and write this for me. Please forgive me in advance if you feel it’s inappropriate. Thank you.
I never in a million years thought once about the life-time costs of having my transplant and surviving, nor the actual costs of the funds required in the three plus months post-transplant that are required away from home and are dwindling every day as I write. So this is where I have to succumb all of my pride to ask for help. I feel terrible as I really thought that we did a great job saving and we wouldn’t need anything from anyone. But we do. I do. I need to continue to survive. I need my medications, a safe and sanitary place to stay away from home while I am healing, I need a vehicle to carry my wheel-chair and walker and all of my bags, blankets and clothing and cold/weather protections. I need funds for fuel to get to the hospital at least twice a week just to go to the lab for my blood work, let alone other appointments that I have with my Social Worker, Counsellor, various Specialists, Mal-nutritionist, Dietician and all other appointments to get tests like Doppler ultrasounds on my legs, Echo of my heart, Neurology tests, Scope tests, Liver Biopsy and more. It really astonishes me and literally takes my breath away at the fear that we will not have enough funds to ensure that I attend everything required to keep me alive. So if you and/or your family can spare anything; even the cost of a coffee or a newspaper, I (we) would appreciate it more than I could ever begin to express. Unfortunately, I cannot call or acknowledge the donations to my account received personally, but whoever is minding the account that day, will always reply to you with a heart-felt genuine thank you for anything you can give. Any funds you can give will be a huge help at this time. We need to ensure I get through my healing time which I am told by my Edmonton/Calgary medical teams could be a year to two years for recovery but they are shooting towards the two year mark due to all the complications so far (especially the damage that has been done to my kidneys and also the possibility of continuing liver rejection and trying to reverse that before another liver and or kidney(s) transplant has to occur). So many unknowns for the future; yes. But what is for sure this moment is, I am in need of funds to continue to survive and these funds are required beyond any that are received by family or former donations to date. Unfortunately, no one in my family is what society would consider “well-off”, nor can they afford funds out of their own minimal life-styles. I want you to know that I have done my due-diligence ensuring that I had asked for help prior to asking from anyone that may be able to help with my Go Fund Me account.
To my friends, my family and friends that I have not met yet, I appreciate that you have taken the time out of your own life to read my story, my summed up version of the past four years of my life until present. It’s been a journey, which continues as I have this second chance at life to live and go through chapters that I cannot even imagine. Bless each and every one of you. And thank you from the bottom of my heart because no words can express the gratitude I feel and just how lucky I am to be alive.
Thank you for being part of my Go Fund Me account in advance and being part of the “Believe in Cindy to survive a liver transplant team.” Nothing can be as positive as that and always remember that you ARE making a difference each and every second of the day. And always remember…..
“Believe in miracles because we all are just that, a MIRACLE. Believe.”
A full-liver transplant SURVIVOR, December 21, 2017.
A note from Aunty Penny and Uncle Robin.
As you have just read Cindy has been through an incredibly difficult and trying four years which she has endured with patience, frustration, laughter, tears and determination.
When we hear of people getting a transplant we think “That’s great, so nice” and don’t think much more about that person unless maybe we know them. We have two other close family members who have also received organ transplants over the last few decades. It has been an eye opener to see what they have gone through, pre-transplant, surgery, recovery, post-transplant. One of them actually had three transplants and she is considered a ward of the government and therefore had most of her expenses covered by them and also had retired parents who could spend weeks with her as she recovered. The other also had retired parents who financially supported him and lived with him as he recovered in Vancouver. Both of them are still dealing with life after the transplant.
Cindy and Darren are in a situation where they must live far away from home and most of the extensive expenses they have to incur are their responsibility alone. Please don’t just say “I’m so happy Cindy got her transplant” then forget about her. Her and Darren really need all of us to do whatever we can do to help. Please tell your friends and family and ask them if they will consider helping too.
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