Ernest has had his transplant! His life has been saved. Thank you all for sharing, posting, praying, donating and lending a helping hand. The family is elated and trying to let it all sink in.
There’s a long road of recovery ahead but we are determined to continuing the push forward in order to give this story a happy ending!
Your continued prayers and support are greatly appreciated.
Ernest Adzentoivich is dying. He is a dad, husband, son and friend who suffers from a very rare and complicated disease called Nodular Regenerative Hyperplasia with Portal Hypertension (NRH). The origins of this disease are unknown. There are no foundations or advocacy groups for NRH. There is no standard protocol of treatment.
He is dying. He has uncontrolled internal bleeding, ascites, osteoporosis, anemia, adema, GAVE of the stomach, kidney failure and many other complications. He needs an O liver ASAP in order to save his life. We had been looking for someone who is in the position to direct the donation of a loved one's liver upon their death because he is not eligible for a cadaveric liver through UNOS (read full story below).
Fortunately, through this journey and much outreach, we’ve learned that there are a few medical centers in the United States who will perform a Living Donor Liver Transplant (LDLT), which is an amazing procedure. Doctors in Italy and Holland have successfully performed this type of transplant on NRH patients and the team at Stanford believes that this will work to save his life!
We’ve had several people offer to be tested to be a donor. What a true blessing. Complete unfettered selfless generosity. Simply beautiful.
But all of this comes at a tremendous cost. We have relocated our entire family to the Palo Alto area (but we’ve left our big dogs at home with other family members, so you thieves better not get any ideas;)) and set up in a comfortable apartment which we’ve gotten for a steal because they’re doing construction. Again, a blessing! But nothing in Silicon Valley comes cheap. We need all the help we can get. Please.
THE ORIGINAL PLEA:
UNOS, the organization that governs organ transplant in the US, does not include NRH in its list of conditions that qualify for transplant. The MELD score used to prioritize patients on the wait list for a liver does not take into consideration the specifics of this condition, and as such, Ernest will never get to the top of the transplant list as it stands today.
As we wait, the family is incurring debt in the form of lost wages for both Ernest and Nancy, medical bills, copays, prescriptions, hospital parking, food, gas, childcare and general day-to-day stuff. There is no estimation for how long he will be in this waiting stage - things could take a turn in either direction at any moment. Having a financial cushion would greatly reduce the stress and anxiety we are all facing at this time.
Ernest is enrolled in two studies at The National Institutes of Health in Bethesda, MD in the hopes that his suffering may help others who come after him. The family is committed to raising awareness and support for people suffering from NRH and non-Cirrhotic Portal Hypertension once this ordeal has resolved.
*This campaign has been set up by me, Nancy Adzentoivich, wife of Ernest Adzentoivich. My family and I plan to use all donated funds to transport Ernest safely to Stanford Medical Center, support the family’s travel to Northern California, pay rent for housing while we are living out of town during the transplant and recovery (3-4 months), and to assist our living donor with travel to, and accommodations near, the medical center. Funds raised will also cover some of the out of pocket medical expenses that are associated with such a complicated procedure and recovery. Thank you.
You can learn more by visiting our Facebook Page:
For more information about UNOS:
For more information about NRH:
To sign-up to be an organ donor:
- crystall ogram
- David Graveline
- Daniel Kowal
- Angela Berezwick
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