Amanda's Liver Fund
On January 30, 2016, I woke up to what appeared to be a large bruise on the majority of my right thigh. By the end of the day the bruises had spread and were covering the majority of my legs. After going to my doctor and having blood work drawn I was immediately admitted to the hospital due to my liver enzymes being extremely elevated. After a series of tests the doctors concluded that I have Primary Biliary Cirrhosis (PBC). This was confirmed with a liver biopsy. Through the liver biopsy it was determined that I have overlap syndrome with PBC being the main disease and autoimmune hepatitis being the secondary disease. Both of these diseases are ongoing and something that I will have to be treated for, for the remainder of my life.
Currently I am in stage 2 of 4 of Cirrhosis and the progression is dependent upon how my body accepts the medication. During the next 12 months I will continue to have weekly blood work to monitor my liver enzymes, as well as testing to make sure I am responding to treatment. I will continue to need regular testing throughout my life to monitor the progression of the disease.
At the age of 26 the idea of an ongoing progressive disease is terrifying. I don’t feel like I have control of my body and I don’t know what to expect from day to day. While this disease has had a major effect on my life, I do not want this disease to define me.
There is no cure just treatments, and each individual responds differently to each treatment. I have been informed that this disease will most likely lead to a liver transplant. After the transplant there is still a 1 in 5 chance the disease will return.
After 10 months it is safe to say I am starting to feel like a pin cushion. In addition to the stress of dealing with an ongoing disease comes the stress of dealing with the medical bills and the cost of my prescriptions. My doctor has begun to prepare me for the fact that a live liver transplant may be necessary sooner rather than later. I am scheduled to begin a stronger more potent medicine this month - this is the last medicine available before liver transplants become necessary. We will know within a month if this medicine is benefiting me or if we must proceed with a transplant. I would have to go out of network to have a living donation transplant performed and the cost will be 10,000.
Ok, this is just a small part of Amanda's story. This story basically just defines her disease diagnosis...this is all facts and numbers and information. This story describes an illness and a need to be met, but this story does not begin to encompass the amazing individual who is fighting the battle of her life.
Amanda Lynn Hux, is 26 years old. She is the middle child of 3 kids born to Mike and Tracy Hux. She has been through more tests of character in her 26 years than many much older than her. She is, and always has been, one of the hardest working individuals I know. It is not uncommon for her to hold 1-2 jobs on top of her fulltime job. She has been proudly serving as a uniformed civilian employee with the Missouri State Highway Patrol since January 16, 2013. She always rises quickly to leadership roles because of her kindness, integrity, and work ethic.
Amanda is quick to come to her friends and family member's aid. She is compassionate, empathetic, but above all proactive at seeing and meeting the needs of other individuals. She is a helper and a doer. It is simply in her nature to nuture those around her, from grandparents to her nieces, to co-workers, cousins, and friends. If you know her, you have been touched by her. You know her soft heart and her get-it-done-positive-attitude. Even in the midst of such a life-altering diagnosis, I really haven't heard her complain. She tells her story if you ask, but she has accepted bad news with grace and approaches the future with bravery and positivity.
Your donation will be used to help cover the cost of expenses such as: travel for treatment, hospital stays, lab work, doctor visits, and medication. Additionally, if the doctor is not happy with the results of the current medication the next step, would be to help cover the cost of an out of network living donation liver transplant. Amanda will find out more about the potential of the liver transplant within the next month. I will update the details as the Doctors assess them. Thank you for considering giving to this cause; we are so very grateful.
We are asking for extra prayers, specifically pray for peace and answers. This week is a benchmark and will help determine the course and rate at which she receives a transplant. These evaluations are a big deal so lets cover her in prayer!
One final prayer request: she continues to struggle with her dialysis catheter bleeding. The Drs. don't know why and as of yet, have not found a solution to the problem.
Thank you; God bless you!
She has made 2 trips to KU Medical's ER: one late Friday night while it was spitting ice, one last night, and then early this afternoon it began bleeding again, and she went to the Dialysis Unit in search of more answers.
At this stage in the game: the catheter should not still be bleeding but the Doctors do not believe it is bleeding enough to be harmful. The upmost concern is: that the area stays clean and free of infection. When it begins bleeding she has to go to the hospital and get the dressing changed.
It is obviously hard to go about your daily life when you are uncomfortable and when you have to head to an out of town hospital every other day or so.
So, please pray, pray for physical comfort and that the bleeding does not begin again. Pray for Amanda's piece of mind as well as that her body stays free of infection.
As always, we are so so so thankful for each and everyone of you who have taken the time to read her story, the updates, and continue to share it. You are making a positive impact. Thank you for your prayers and please continue to pray.
Yesterday, my doctor called with the results from the biopsy that was performed on December 27. They aren't terrible but they aren't happy with them, and they are just continuing to get worse.
We are beginning the transplant evaluation process in February. I will see a series of doctors to make sure my body can handle a transplant. They will also look into my insurance and see what I am responsible for paying out of pocket. Prayers for a quick and efficient approval process are appreciated. We have been forewarned that it can be a bit of a struggle to obtain approval. In the mean time I will continue the plasmaphersis treatments every Wednesday, my next one is tomorrow (1/11/17).
I really enjoyed the holidays, getting to see all my friends and family and celebrate with them. Although it was an exhausting couple of days, and really took a lot out of me.
I would like to take a minute and thank you all for reading and keeping up with my my story. Your thoughts and prayers are greatly appreciated and your donations have helped to relieve a lot of the financial burden. Thank you all, I hope everyone enjoyed the Holidays!!
Continued thoughts and prayers of peace and comfort are greatly appreciated. I know I have been covered in prayer and that I am in good hands. Thank you for all of your love and support in this difficult time.
Amanda sent me a bulleted list of updates and prayer requests that I will share below:
- I have a new medication for itching
- I'm restarting the intense medication again
- I'm doing 2 more plasmaphersis treatments and then we will reevaluate if we're continuing
- I am going for a liver biopsy on December 27th
- Based on the results of the biopsy we may start the transplant evaluation (which consists of seeing specialists for heart, lungs, infections disease, and the transplant surgeon over a 3 day period)
-Continued prayers for the itching and pain of the dialysis catheter/port.
-Comfort and peace for the liver biopsy
-Hopefully more relief from itching, and better sleep
-That the plasmaphersis is effective