During her hospital stay we finally received the results on her liver biopsy.
Before I talk about the liver biopsy, I need to give you a backstory on Heather's health. When Heather was in middle school she became ill and was lethargic, had high fevers, hives all over, joint pain, sensitivity to light, and no appetite. After many doctor visits and blood work, it was determined that she had an elevated ANA. These numbers were high, but not high enough for Lupus and Juvenile Rheumatoid Arthritis (which they thought she might have). In most cases, a positive ANA test indicates that your immune system has launched a misdirected attack on your own tissue — in other words, an autoimmune reaction. But some people have positive ANA tests even when they're healthy.
After about a month, Heather returned to her normal, healthy, and active life. My main concern was her weakened immune system. When she got sick (or run down), it took her a bit longer to recover.
From middle school until her Lyme diagnosis, she kept up with an extremely hectic and active life style.
So in 2014 Heather became ill and that is when we discovered her Lyme disease. The doctors are now pretty confident that when Heather became so sick with the Lyme disease that her immune system became even worse and started advancing the attack on her liver and other organs.
They also mentioned that her immune system had been silently attacking her organs for probably 20 years. Heavy heavy sigh. Since she was never really "sick sick" and never had liver symptoms, they never looked at her organs until she was sick with Lyme
When she had the surgery to remove the gallbladder that just kind of pushed everything over the edge and her immune system is out of control (my words). They are encouraged that they can treat the liver with medicine to control the symptoms and to halt any progression of the liver disease.
We are adding another team of doctors to help with this. The doctor said that for someone with a mildly compromised immune system, like Heather's in her teen years, organ issues typically would not have surfaced until much later in life (60s) and then it would've been an extremely serious problem.
Heather's appeared sooner because of the Lyme disease and the stress and strain that put on her body. These are the facts as we know them now and they may change as they dig deeper. I just felt that some of you may have wanted to know what was happening since we have been recently quiet.
To be brutally honest, she feels like shit right now from the swelling and is overwhelmed with how complicated her case has been. Every single doctor that enters the room starts out with "well, you certainly are a mystery and a very interesting and complicated case." Where is Dr. House when we need him? A quick fix would be great.
Thank you for your thoughts, concerns and prayers. We appreciate it. Heather is at a great hospital and has an incredible medical team. We are confident that they are approaching this the correct way.
Heather is an amazing patient and the nurses just love her, but of course who doesn't love her. She has shed a lot tears in the last few days out of fear of the unknown, a desire to get some answers to make her feel better, and just shear frustration.
We are in contact with her Lyme doctor and keeping them up-to-date. I have to give a great shout out to the Lyme doctor. When he first met Heather and was going over her medical history he suspected that she had autoimmune hepatitis. He was insistent on the tests that were run, the removal of the gallbladder, and the liver biopsy to either confirm or rule out the autoimmune hepatitis. He knew this would affect her Lyme treatment. Several other doctors felt the gallbladder removal was unnecessary because she wasn't experiencing gallbladder symptoms.
I am rambling - so much to say - but I must focus on Heather right now.
xo
Lisa
