Hello all,
For some of you this is an old story which has renewed and for others this is your first time hearing about my journey with my hepatic liver adenoma (fondly named Igor). In 2013, a routine doctor visit and follow-up bloodwork indicated that my liver had something "going on." Long story short, after discovering a tumor on my liver measuring over 11cm x 11 cm we tried everything we could to beat it. My family and friends were an amazing care team and support system through it all. But in case you are now wondering, "What is now going on for Audra" I will bullet point rather than narrate the past and present situation...
I love each and everyone of you and appreciate your interest and support in my current health situation.
Love always,
Audra
2013:
· MRI/CT Scans/Ultrasounds galore to identify a new liver mass.
· Liver and tumor biopsy (determined that tumor was a benign hepatic adenoma but too large to ignore).
· Liver Resection (attempt to bisect or remove it failed as tumor was deemed not resectable after open abdomen surgery).
2014-2018
· More and more MRI and CT Scans.
· Completed 7 Trans Arterial Chemo Embolizations (TACE) (normally most tumors respond after 3 procedures). Tumor did not shrink as was expected but did shrink some. Goal was to try to get it small enough to cut it out. Look it up- kind of cool stuff, I must say.
· Began process of Computer guided radiation to attempt to make Igor stop growing. Ended up cancelling procedure for fear of harming diaphragm and right lung. I do have a set of lovely tattoos across my chest as a forever memory .
· Began tracking Tumor growth with bloodwork (Tumor markers) and found that it was “behaving” and not converting to Hepatocellular Cancer or growing too quickly.
· But…Tumor re-grew to original size over this time period.
Jan 2019-December 2019
· MRI’s every 6 months as we (me, family, friends, liver team) decided to “Watch and Wait.”
· Began to feel uncomfortable and often missing out on life due to the size of the tumor in my abdomen and revisited options available in today’s tech savvy world.
· Made appointment with new Hepatic Doctor in Colorado Springs who said, upon our first meeting, “Wow! That is a big tumor. I haven’t ever seen one that size before. Tell me your medical history.” About 2 hours later, he was filled in and now saying…we need to start to treat this now. Off I went on referral to UCHealth Anschutz (UCH) and yet another liver biopsy and MRI scan.
2020-Present
· Met with the Chief of Hepatic Transplant at UCH, Dr. Pomfret. She is amazing and I love her now! She is a “no joke” kind of doctor who first considered another resection attempt to remove the tumor which has now found its home wrapped around both of my livers blood supplies and covers all lobes of my liver and highly risky for surgery. She ordered 23 different blood tests including a Hepatitis C test (Hep C damages the liver over a long period of time and causes cirrhosis and cancer). The Hep C test in 2013 was negative.
· Plan of action changed over a matter of three hours when surgery was ruled out and transplant became my only option to get rid of this tumor and the pain associated when the Hep C (HCV) test came back positive. Theories on how I contracted Hep C are out there (I was never an IV drug user- that is always the first question) but we have settled on me probably having been exposed when I had all the surgical procedures done at Porter Hospital during their contamination phase. The surgical department at Porter was/is under significant investigations and has been shut down for unsafe surgical practices from 2013-2018 which lead to people contracting Hep C….go figure (Yah, I will add my name to that lawsuit).
· So plan changed to:
o First, treat Hep C (easy peasy) with a drug that I take once daily for 8 weeks and is making me terribly sick but that will subside in a few week’s time once the virus is dead and washed out of my system. Awesome drug advancements from a few years ago have made this diagnosis not a death sentence. This drug CURES (never before done) 95% of Hep C patients. Yahoo and thanks to the medical field for developing this one!
o Second, begin transplant evaluation process. I spent two days (in the midst of a blizzard driving to/from Denver withy my family and friends) for evaluation. Blood tests and other exams continued- so add 36 to that count (now at 59 tests and pokes if you like to keep track :) ). Those included evaluating everything from my heart function to liver function to lung functions to meetings with social worker to evaluate my mental condition (open door folks!) as a transplant patient to dietician evals to meeting with Infectious Disease Specialists to meeting with Liver surgeons (which by the way…liver surgery is the most difficult surgery ever performed- more than heart and brain surgery). I learned a lot in 48 hours for sure.
· Where I am now: COVID 19 has shut down the department for surgeries and intake but they wanted to get my case moving so they saw me anyway. All of the tests and exam results will go to a committee which meets each Thursday for review (mine gets reviewed March 26, 2020). They will then determine if I am a good candidate for a transplant (or if they need a few more diagnostic tests) and then that decision/recommendation goes with the application to be added to UNOS (United Network for Organ Sharing). Once on the organ list... I wait.
Here is where it gets hard for me…..I need a liver. I have time. I am strong, healthy, secure and highly capable. I am told by members of the committee that I am in the top 5 of the great candidates and probably the number one candidate that they have ever seen/evaluated. BUT they know that because I have a relatively good functioning liver right now that I will be placed at the bottom of the need list.
Sounds crazy but my one GOOD chance is to find a LIVE donor to get a liver. Yes, livers regenerate in about 4 weeks to the size they need to be (just like skin). A donor can give 1/3 to 1/2 of their liver and never suffer from the loss of an organ such as a kidney donor does. Very special and unique but it takes that ONE person.
Notes: My live liver donor has to be of similar size to me (height and weight), that donor has to be O Positive, that donor has to be able to travel to Denver and stay there for 2-3 months (eval/surgery/recovery), that donor has to understand the risks, and that donor has to be between 21- 55 years old and so on.
My insurance pays for all medical procedures for the live donor and I pay for all travel, meals, lodging, care giver expenses, lost pay, and misc. costs- WHICH I AM HAPPY AND ABLE TO DO!
Please know that I do not ask this of anyone lightly. I have dealt with this tumor for 7 years and it "needs to go" to allow me to continue to live my life with all that life has to offer. I will still be on the cadaver donor list but that may take years. The transplant team trained me on how to ask people to consider this but you are my “community” and it isn’t like asking someone to grab you some Toilet Paper when they run to the store. Know deep in your hearts… that by not offering to be a donor for me that it does not change how much I love you in any way and never would. I respect that and LOVE YOU ALWAYS. All I ask is that you tell my story to each and every person you know and meet so that I may find that perfect donor match who might be able to help.
I will keep you all updated through this Caring Bridge site but if you or someone you talk to wants more info on live donation PLEASE send them to: www.uchealthlivingdonor.org (
http://www.uchealthlivingdonor.org) or call #720.848.0855 If they can’t help me they might be able to save another person’s life.
