The good news is that Heather's liver enzymes really improved in June 2017. It was such a relief - however I still worry.
As we have heard from so many doctors, Heather's health issues are a medical mystery - she is an anomaly. The liver doctors were stumped by the severe damage to her liver, and now they are equally stumped
and ecstatic about this improvement.
I can't wait for the next round of blood tests that will hopefully confirm this continued improvement. The thought of a liver transplant for my sweet Heather was terrifying. It was just too much for us to comprehend. However, I learned a lot about the advances made in Liver Transplants. They now do "living donor" transplants. Basically, if a match is found, the living donor donates half of their healthy liver, and the damaged liver is replaced with the other half. Within a few months both livers regenerate to a normal size liver. Crazy right? I will share more later.
When Heather got sick in NYC, she tested positive for a genetic disease called Poryphria. They did additional testing and of course she tested positive again. The odd thing is that she doesn't present with the main symptoms and nobody in the family had this disease. We kinda put that disease on the back burner. So once again, Dr Google Lisa recently did some research and saw there may be a link to the liver damage. Yep - once again - a medical mystery.
I try not to do a ton of medical research - but I do try to educate myself with all things Heather. I know you can always find that worse case gloom and doom diagnosis - but I am looking for success stories, treatments, homeopathic approaches.etc. In a perfect world, I will find the cure to all of Heather's ailments on the internet.
I am already slightly educated about Lyme and how screwed up it is.
- Because of the mild winter we had, they are expecting a higher percentage of Lyme patients. Wasn't 300,000 new cases a year enough?
- Lyme disease tests are highly inaccurate,
- Lyme Literate Medical Doctors (LLMD) that treat chronic lyme are very expensive and don't accept health insurance,
- When Lyme isn't detected in the early stages, it becomes Chronic Lyme, a condition which the CDC and IDSA both deny even exists. The will continue to deny it, because if there's one thing insurance companies hate, it's chronic disorders they have to spend time and money treating.
- There isn't a cure.
My continued concerns for Heather have to do with her fatigue, excruciating nerve pain, and brain fog. All of these symptoms are related to Lyme. Yes, those nasty ticks can cause so much damage. A few months ago Heather was seeing a holistic doctor that specializes in Lyme. Sadly, Heather's numerous health issues make it difficult to safely treat the Lyme without further damaging her liver.
Heather has been sick now for 2 year and and 8 months - not that anyone else is counting. The doctor appointments have lessened, however she still doesn't have the stamina to resume her normal work and social life. As I have said before, she has good days and bad days.
One of the thing that I am most proud of, is Heather's positive outlook on life. Trust me she has some very difficult days, but she is trying her best to remain focused and hopeful.
So many of her friends are married, have babies, work, and travel. Heather is happy for them and she is hopeful for herself. It just breaks my heart to think about the hurdles Heather is still facing. Thank goodness for her amazing boyfriend and his supportive family. They bring such joy, laughter and happiness to her.
Now let's talk about me. It is difficult to find that one word that sums up my life without my Mom. Yes, I know, she is with me in spirit and watching over me, but sometimes that isn't enough for me. Since her passing, every day I think about calling Mom. Mom was the person I talked to every single day, she had such a positive attitude, and was ALWAYS there for Heather.
I can't even explain how depressed I was after losing Mom. Then, three days later, we found out that Heather was possibly being put on the liver transplant list. My world seemed to be crumbling down around me. I have such wonderful support from family and friends, but sometimes a girl just needs to talk to her Mom.
Here's a fact. I am learning to not be so overly protective with Dad. I found myself hovering and worrying. I can't even fathom how sad it is for him to be alone in the house surrounded by all things Mom - her lingering perfume smell, the royal memorabilia, the box of cards that she purchased months ahead of a person's birthday, or her seasonal decorations.
Dad is doing well and I am so blessed to live close by and spend time with him. Several nights a week he joins us for dinner. He shares stories, we talk about Mom, and we just enjoy our time together. I always try to learn from his example. He is the most generous, thoughtful, loving, caring, and intelligent person that I know.
Years ago I was fortunate to have worked with Dad. Not only did we publish a book about golf courses in the DC metropolitan area, but I did contract work for him at several of the unions that he supported. Dad has an amazing work ethic, he treated everyone with respect, he kept up with technology, and he is an amazing writer. I guess you can tell how much respect and love I have for my Dad.
So, each day I try to put one foot in front of the other and continue to move forward.
I try to focus on the positive things in my life.
I try to help others.
I try to take care of myself.
xo
Lisa
