In March 2016 if you had asked me to predict Heather's medical situation for 2017, I would have said she would be in Lyme treatment. Never in a million years did I think the focus would switch from Lyme disease to liver disease.
Heather and I wanted to be honest about her journey, but the more testing that is conducted, the more they discover, which leads to more tests and of course more problems. The last few months have been a challenge. We have shed a lot of tears.
I know, I am talking in circles. As I have said, we know that Heather's immune system has been compromised since childhood. We know that she has a fatty and damaged liver, and elevated liver enzymes that don't seem to be getting any better despite life style changes and medicine adjustments.
Heather is now a patient with the Medstar Georgetown Hospital Liver Transplant team. Yes, Liver Transplant Team. Trust me, this diagnosis was SHOCKING to hear. We went through all of the emotions - disbelief, anger, frustration, sadness, etc. We have known about this diagnosis for about six months.
Two months ago, her liver numbers had improved, but sadly this week we found out her numbers are worse. This means more tests (i.e., MRI, doppler ultrasound) and additional blood work. If her numbers aren't any better, then she will meet with the liver transplant team and probably be put on a transplant list.
Yes........................my sweet Heather will some day, in the unknown near future, need a liver transplant.
Let's go back to the Lyme and liver. Heather's Lyme doctor always knew that Heather had several secondary issues that needed to be addressed before he could treat her chronic Lyme. Well, when he found out about the liver disease, he said Heather would need a liver specialist and hematologist to monitor her liver. Well, that won't be happening. It is too risky to put her Liver through an antibiotic treatment. We are taking with Doctors about alternative methods for treating Lyme, however Heather is now a liver patient.
I still blame that damn tick for F'ing with Heather's health. One small tick. One stupid bite. My best analogy is that the lyme disease with the compromised liver and the unknown immune issues, coupled with months of antibiotics was the perfect storm for serious damage to her health. There is no correlation between Lyme disease and the damaged liver, but then again there isn't a "cure" for lyme so there is still a ton to learn. I haven't been on a Lyme rant for a while, but I really do HATE and DESPISE Lyme disease and the CDC. Rant over (for now).
We will never know when Heather's liver starting going down hill. We do know that the images of her liver when she was first diagnosed with Lyme showed a normal size liver, gallbladder, and spleen. Her liver enzymes were elevated but that was expected due to all the antibiotics she had been taking for a few weeks. The surgeon that removed her gallbladder and took the liver biopsy told me that her liver looked like it has been deteriorating for a very long time - maybe back to childhood.
The biopsy results mentioned that she has fatty liver of "unknown etiology." When Heather talks with the Liver Specialists, they always mention that Heather is one of their young mystery patients. They are stumped about the deteriorating condition of her liver.
Heather's liver team is amazing. They are compassionate, honest, encouraging, and have the best "bed side manner." We are fortunate to have this team of doctors in our own backyard. Thank you Laura - we appreciate the referral and your guidance.
Another concern and reason for a possible transplant is that Heather is at a slightly higher risk of getting liver cancer. Well we have AMAZING news there. She had an MRI of the liver 6 months ago and there were no spots on the liver. Hopefully the MRI she is getting soon will have the same results.
It is hard for me to understand why raging alcoholics, that drink 24/7, don't have liver disease.
How can plain ol' drunks have a normal liver?
How can a 34-year old woman, that worked 60+ hours a week and partied with her friends like any 30-something person would, have this diagnosis?
We are not alone in this "why me" question. Anyone dealing with a sad medical condition wonders "why."
This was a really tough blog to write. I initially wrote this blog six months ago, but so much else was going on that we didn't want to post it. Heather's first visit with the Liver team was 4 days after my Mom passed away. Let's just say we were overwhelmed with life then.
When we started this Lyme blog, it was to educate and inform about ticks and Lyme. Who knew that instead of Lyme we would switch a few letters and now deal with the Liver. It is hard to share such personal medical information. Heather will determine if she wants to continue to share her journey.
Let's back up a few months - Recently Heather has been having problems with her neuropathy, vision, and brain fog. Of course, once again Heather is a mystery patient and her new neurologist is stumped. Sigh. Unknown etiology - um perhaps Lyme is a possibility? We know that the liver doesn't cause her nerve pain. That my friends is a Lyme thing. argh. But I digress.
Heather also had started a new job in February. We were keeping this quiet in hopes it would work out. Sadly, the Lyme neurological issues and missing a few days of work for Doctor appointments and tests made it impossible for Heather to meet the companies' realistic expectations. We are thankful that they were willing to give Heather a try. Sadly this job opportunity required a 40-hour work week, plus a commute. I know that seems like normal working hours, but Heather's body just wasn't able to keep up.
A few healthy years ago, Heather worked a 60+ hour work week and still had energy to socialize. Oh Lyme Disease and the F'ing CDC - it's bad enough that one small tick can cause such damage, but I will never understand how the CDC buries their little heads in the sand and don't look at the scientific evidence about the long-term effects of Lyme disease and that chronic neurological Lyme does exist. My sweet Heather is quick to say that she wouldn't wish Lyme disease on her worst enemy. That in itself speaks volumes.
Heather - I can only imagine how terrifying this new diagnosis is, but I will NEVER give up helping you, seeking the best medical care available, holding you on the bad days, laughing with you, and loving you. We have this one Heather. You are such a strong and beautiful person and I know that you are ready for this fight.
Please keep Heather in your prayers.
xo
Lisa
