We are in need of Buddy Passes or airline vouchers to travel - we have old cars that are not in any condition to travel this great distance. If anyone has insight to this it would be greatly appreciated
With a very heavy heart, and busier than normal mind I will share what we learned today at our visit to UK.
Scott has Cholangiocarcinoma,”... more commonly known as bile duct cancer, develops in the small, tube-like bile ducts in the liver” Roughly 3K cases annually.
There are not many options. There are two places in the U.S. that will evaluate him for transplant, as that is the only real cure as the Dr. explained to us. Chemotherapy and Radiation are options but not solutions if that makes sense. He feels that Scott is a good candidate because he is young, his health aside from this is good and he has emotional support. We now wait for the team at UK to reach out to The Mayo Clinic and The University of Pittsburgh and get us referred there for evaluation.
If it is determined that he is not a suitable candidate, we will pursue treatment at St. Elizabeth and do what we can...the cancer treatable the cirrhosis damage is irreversible and will continue to damage his liver.
Meet the Feldhaus': Scott and I have been together for 12 years. We are the very proud parents of two amazing little girls ages 7 & 8, and one pretty awesome dog. We live a very modest life, believe in working hard and setting an examplre for our children. (11/10/16 update below)
What the heck happened: In 2014 Scott was diagnosed with Type II diabetes after losing 80# rapidly without trying. He was stable for almost 3 years returning to his normal weight of 350#. Everything had been fine until he lost a long time job and he started losing weight, which I expected but not the amount he lost. A trip to his GP didn't indicate anything, but a lowered A1C which reclassified him as non-diabetic, though he remained on medication.
In July of 2017 I was away for a few days on a work trip, when I saw him upon return I said "Dude, your eyes are neon yellow!" It was gradual, so I didn't notice it until I hadn't seen him for a few days.
He went to the dr the next week and then it slowly unfolded. Bloodwork = CT scan = MRI = EUS = Liver biopsy. His liver was failing but why? A virtual non-drinker. No family history. A mystery with a twistery....
Referred to UK GI team, who immediatly sent him to the Liver Transplant team....whoa? A transplant? How does a man go from healthy in June to transplant in August?? (see photos for progression)
Ahhh Labor Day weekend how we looked forward to three days of nothing. However the girls and I witnessed him have 2 hypoglicemic seizures at home, he was on dabetic medication still, even though his bloodsugar had stabilized. A very scary weekend spent in ICU to get him regulated, and finally was told to discontinue the diabetic medication and Lipitor. On 9/5 we had a scheduled visit with the liver team, they seemed optmistic that they could identify the issue, at that visit he weighed 259#.
He continued to work, there is no quit in this man!
We celebrated our 10th anniversary at home with cookies and dinner. I began to notice he was more fatigued, had even less of and appetite, and swelling in his abdomen. We celebrated his 42nd birthday on Sept 24th...waiting for the next appointment a MRCP to see what was going on in the liver. He begain itching, a lot, picutre a dog with fleas, he wasn't sleeping...add in exhaustion.
I called our caseworker on October 4th crying..."I am watching him die right before my eyes." We were able to see the Liver Dr's on October 6 (285#), he looked like an anorexic pregenant man, he could hardly walk. He was a direct admit from the appointment with the Liver team. He underwent a paracenthesis and they drained 8L of fluid off of him (roughly 16#). He was put into rapid liver transplant evaluation. October 10th they drained another 8L off of him and finally did the ERCP.
This procedure revealed that he has very tight branches in his bile duct and 2 stints were placed (242#)...that brings us to today.
There are so many uncertainties that lie ahead; he is weak, and for now he is unable to work, I know that this weighs heavily on him. He will need further draining of fluid and testing that will ultimately leading to a transplant.
I continue to work, blessed with an employer who is compassionate and a position that does permit me to work somewhat remote at times.My salary alone however, will not support us and the medical bills that will begin to add up even more. I am looking into grants, medical debt forgivness but all of that takes time.
Your generosity would allow us to take care of immediate medical costs, including adding him to my insurance, medications, transportation from our home in Crittenden, KY to Lexington, KY for treatment and appointements.
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