A few months ago, I got a phone call that changed my world. Immediately after this phone call, it was like I put on a pair of glasses and saw clearly again for the first time in a long time.
My doctor said I had Stage 4 liver fibrosis into cirrhosis. A quick google search will show you that the majority of people who are told this don’t live past a year, and this test had been done months before the phone call. So how much time did I have left with my daughter and my husband? I had no idea… But what I did know was that I would make it count. I have and I will.
Fast forward through many more specialists, several extremely intense procedures and a few ER visits, and now my health picture is more clear. I’m happy to report that not only is my prognosis better but also I’m keeping those rose colored glasses on. And I’m going to encourage you to put them on too. And please, please do not let a major scare be the reason you have to put them on. Make your time count, now.
The good news: My specialists were able to act quickly and identify the issue. In conjunction with some lifestyle changes I made, my test results showed a more positive prognosis just 6 weeks later, right in time to start their recommended treatment.
My diagnosis is Autoimmune Hepatitis. Spoiler alert: it’s not contagious. I wouldn’t want to worry anyone about being around me so I wanted to start there. Hepatitis, in this instance, is just inflammation of the liver. My immune system was so good at what it did that it got a little wild and started attacking (autoimmune) my liver which became very inflamed (hepatitis).
Did I do something to get this? The short answer is no. While genetics or environment can have an impact, there’s no one reason for AIH. And it’s not related to other forms of Hepatitis, alcohol, diet (although I always believe in striving for healthier diet), drugs, etc.
Do I need a transplant? No, not right now and hopefully never. You cannot live without your liver (I’ve become a liver lover). But the liver can regenerate if it is not in full cirrhosis. So, if caught soon enough with no liver failure, you would not need one. Only a doctor would be able to diagnose that part. Currently, my liver is in good enough condition that there is hope for healing over transplant. Please consider making sure that you are registered organ donor to help people who do need a transplant.
What do you say to someone going through a major medical issue? You know, I’m still not even sure myself. But to all my friends and family who reached out with anything from an “I’m here to help” or “I’m praying” to those who were able to help us through this, it is so incredibly appreciated. Showing kindness and compassion and a willingness to help really does mean everything when going through something so big.
I have never had cancer so I can’t say for sure, but I’d imagine being told you have Autoimmune Hepatitis is a lot like being told you have a “good” cancer with a good prognosis. Without treatment for AIH, you could die within a year, in fact the chances of that might be up to 60% according to medical journals. However, with treatment, which will wreak havoc on your body, you are almost sure to improve and survival rates are near 100%. So that’s something to be really thankful for, and also not to mess around with. The medication has a long list of pretty rough side effects ranging from gaining weight and mood swings to medication induced diabetes but it also improves your chance of living a significant amount and I would say that’s worth it!
Right now I’m in the early part of the treatment and I’ve already learned a lot. Having my Master’s Degree in Clinical Health Psychology and having studied alternative pain management and using positive mental health tools to help improve the prognosis of medical diagnoses, I actually *enjoy* reading medical journals. I love having all of the information and also find joy in navigating through all of this with ways that my lifestyle can support my overall health. What kind of information would you like to know about the liver or Autoimmune Hepatitis? I’d love to be able to share more awareness of this disease and share some of my liver love. Next, I plan share some of the things I did to get my bloodwork to improve.
Going through this at any time of life I would imagine would be difficult. But being told this when my daughter was just one and a half has been very scary. It reminds me every day that I am so thankful for the opportunity to blog and do photography. These are things I do while also being able to raise my daughter and be able to spend our precious time together. I have not missed any of our big moments as a family and have nothing to regret. Thank you for reading my blog and for hiring me as your photographer which allows me to find the balance of work and being able to be home with my daughter. Truly with all sincerity, thank you.
I’d also like to credit my friend, Laura Mitchum, for taking these photos for me and letting me edit them. She graciously offered to make sure I got some photos of Elodie in before I started all of my testing and treatment, knowing that not only my appearance could change but that I may have to stop breastfeeding. Fortunately, I have not had to stop completely. Especially through all of the procedures, it would have been easier to just wean. But I could also tell that Elodie was not ready and I came to a decision that worked for our entire family and reduce our overall stress during a stressful time.
Also, short disclaimer: I am not a medical professional and all of this information is based on my own experience. Please seek guidance from your medical team before making any decisions about your own health.