Jill: Liver Disease
“Cannabis has allowed me to maintain a regular sleep schedule, and to feel good mentally and physically. This enables me to live the healthy active lifestyle that is so important to me.”
I have “Hereditary Hemorrhagic Telangiectasia, also known as Osler–Weber–Rendu disease (and Osler–Weber–Rendu syndrome). It is a rare autosomal dominant genetic disorder that leads to abnormal blood vessel formation in the skin, mucous membranes, and often in organs such as the lungs, liver, and brain. Most diagnosed with HHT can make it through their life without needing a transplant. There’s a spectrum for HHT, from mild effects to worst case scenarios (like mine), and even death.
At the age of 22, I was told by doctors that I would require a life changing liver transplant at some point in my life. I had this surgery at the age of 29. This path was not as shocking as you might expect as my mother, grandmother, sister, cousins and uncle all have (HHT) and the chance was high that I would inherent this awful disease. Unfortunately, my mom and I required liver transplants. My uncle has had preventative maintenance to avoid any further complications. For him, the HHT had affected his lungs.
Prior to being diagnosed with (HHT) I was adamant to maintaining an active and healthy lifestyle because I knew the chances were high that I would be diagnosed with this disease. Being extremely active actually fast-tracked this disease, to my surprise. One of my liver specialists at the time thought this may have been a reason I got sick so young. HHT is a blood vessel malformation disease. The veins in my liver were abnormal, and caused pain and discomfort.
While I took on 1/2 marathon running as a regular part of my life, the blood that was already being starved from my compensated liver, was now being further stolen from the liver by going to my large muscles while running for hours at a time. This was before I knew my liver was in jeopardy.
I spent the rest of my 20s heavily medicated and not living a fulfilled life I was used to. Also my sub-conscious was programmed that I would need a transplant one day which was mentally exhausting. I have been on countless kinds of medications over the last 12 years to manage mood, sleep, pain, nausea and depression. Sometimes the medications did what they were supposed to, but the side effects were almost always as bad as the initial problem. Constantly dealing with stomach aches, head aches, vomiting, weight gain, poor sleep and an unstable mood that distinguished my healthy life style.
The condition isn’t typically painful unless the symptoms become untreated. For instance, I had a lot of nosebleeds as a child. They weren’t painful, but as I got older and symptoms progressed, I had internal bleeding, esophageal bleeding and that was definitely unpleasant. When I was suffering the symptoms from this condition, yes I was in pain and that was why I needed pain killers. The HHT had caused many other things to go wrong that caused pain, too, such as pancreatitis. HHT is rare and not many doctors understand it and all of its complications. I believe each case of HHT is different and manifests in different ways.
I came to try medical cannabis to manage symptoms when my liver was incapable of processing pain medications, as they were not good for a failing liver. At first I used an Indica strain that had 7-10% THC / 8-11% CBD. This helped with mood, nausea, sleep, appetite, and pain. After troubleshooting, I have found great results since I have been using medical cannabis oil with 65% CBD / 12%THC which this treatment has greatly improved my mood and my sleep. I take cannabis oil about two times a week and smoke cannabis maybe 5 times a week.
My liver function has been great since my transplant, and because smoking and using cannabis all the while and not necessarily telling my doctors (before and after transplant) it’s hard to know what has been Most instrumental in keeping my liver function healthy. I do take anti rejection medication that I know has kept me alive and unfortunately, cannabis would not be able to replace that medication. Cannabis has allowed me to maintain a regular sleep schedule, and to feel good mentally and physically. This enables me to live the healthy active lifestyle that is so important to me. As far as my transplanted liver, doctors are hoping I live a long life with it, 30-40+ years. The first liver transplant recipient in Canada is still alive and doing well, 35 years post transplant. HHT.org is a good website to check out for further understanding of this disease.