For those of you new to this journey, this is MY best guess about the last 18 months. First, when Heather was 12 years old we found out she had a slightly compromised immune system. Then, in the fall of 2014 Heather starting getting sick with the flu, tingling in hands and feet, and numerous kidney and bladder infections. Her immune system was probably getting annoyed. Then you add in the Lyme disease diagnosis and aggressive antibiotic treatment in December 2014 and her body was like WHOAAAA - what the F is happening. Her body continued its silent attack on her organs, then to add insult to injury, throw in a surgery in 2016 and SCREEEECCHHHHHHH. The brakes are slamming and Heather's body is angry.
Remember, we are in Lisa's world right now. I'm not a medical doctor, but I have done enough research to be dangerous. Actually, if I were a character on a soap opera, my research would have been sufficient for a highly specialized medical degree.
Backing up, after Heather left NYC in 2015, I realized that I needed to get a copy of all of her test results and medical reports just in case she needed to followup with a local doctor. Remember, we never knew about chronic Lyme and we really did not know the depth of her crazy immune system.
So a few months ago, I took the time to put together the now infamous "Lyme book." I bought a lime colored three ring binder and I made copies of the results for every CT Scan, Ultra Sound, MRI, blood test, etc. It also had business cards from any doctor that treated Heather and the dates that she received treatment. At the time I had no idea how invaluable this book would be.She is taking so many pills and supplements, that I also had copies of her medicines. Sure the list of medicines was useful to give to doctors, but I discovered that having the 18 months of tests in a binder was invaluable to the new team of doctor's that were treating Heather after her gallbladder surgery and hospitalization.
Since Heather was new to the post surgery hospital and team of doctors, they were quite intrigued and perplexed about her case. Heather was able to address the timeline of symptoms and diagnosis, but they were anxious to dig deeper and really see previous tests. Queue the lime book. Doctors were coming into her room and asking to see "THE BOOK." They were flipping through it and writing down test result values. Sometimes they would be thinking out loud and mention that they wish they knew what liver studies had been run on Heather. Well, I flipped through my binder and could show them the information.
Can you say anal. hahahahahha. Not like a butt, but super duper organized. It makes me laugh because my house is a controlled clutter and the Lyme book is so beautifully organized. I guess you can tell what matters most in my life and that is Heather's health. Who really cares about a messy closet or cluttered work room. Truth be told, I hate my cluttered work room.
I don't brag much, but this book was a useful resource to Heather's medical team. It allowed this new team of doctors to get a glimpse into Heather's Lyme journey and see the decline of her liver in the last 18 months.
On a related side note, Heather's liver biopsy was performed at a different hospital than the hospital where she was admitted after surgery. Therefore, there was some difficulty getting a copy of liver biopsy. I know - seriously, in this digital era it is difficult to send a one page document? grrrrrr, yep, that is me growling.
When the biopsy report was finally obtained, this wonderful doctor came into Heather's room with a xerox copy for my Lyme book. He beamed and said that he knew it would be useful. Yep, it sure was. The next doctor that came in wanted to see the liver biopsy and voila, queue the lime book. OUCH!!! - my arm hurts patting myself on the back.
I will do anything for you Heather - even if it means trying to be more organized.
Heather is resting and getting stronger. Her nerve pain seems to be subsiding in her legs - YIPPEE. We aren't sure about the next steps yet. However, we know her liver and blood counts (low platelets and other things) are concerning. Can you hear my heavy sigh? SIGH
Last week we met with a hematologist for the first time. This compassionate doctor spent 75 minutes with Heather - and yes, he too loved the lime book. He acknowledged how frustrating it is for chronically ill patients that have to deal with so many doctors and each doctor is concerned about a different piece of the puzzle.
More later as this medical mystery tour unravels. There is so much more that we learn each week and so many topics that we will eventually share.
Prayers please for my baby girl. She means the world to me.
xo
Lisa
