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Helping recover from liver transplant & cure Hep C

Organized by: danielle ginn

danielle's Photo
danielle's Photo

THE STORY:

In August of 2014 my husband was diagnosed with End Stage Liver Disease and told he would need a liver transplant or would die. He was 36 at the time. We had been together since high school. We have 3 kids a daughter who is now 19 and two sons now 14 and 8. It was like having the floor drop beneath you. How could this be happening. My husband was only 36. I couldn't believe the road we wre facing. Our life would forever be changed. While going thru the process of getting listed for transplant ( which is a long and vigorous process) he continued to get sicker and sicker. Between Oct. of 2014 and April of 2015 he was hospitalized several times. Our daughter put college on hold to help take care of our younger sons while I stayed at the hospital with Eric. His kidneys went into acute kidney failure 4 times. He was so swollen at one point he had over 100lbs of fluid on his body. His stomach was tapped several times and he also suffered from HPS ( hepa pulmonary syndrome) and suffered from HE which is where the toxins build up in your body due to your liver not being able to filter them. On March 12th he was hospitalized due to HE and put in a medically induced coma for four days. He did not know me or our children. He didn't know he was at the hospital or anything at all that was happening. During this time his kidneys went into failure again and his bilirubin raised to over 30. Normal is .6_1.4. They sent him home on March 20th. On March 22nd he went back to with acute kidney failure and his liver in complete failure. At this time he still was not listed. On April 3rd. He was listed for transplant. Number 1 on the list and given days to live. It was a Friday. The Drs thought for sure they would find a match over the weekend and was concerned he wouldn't live thru the weekend without one. He was put on dialysis and given blood transfusions as well as plasma daily to keep him alive. He was on oxygen because the HPS was causing his lungs to get worse daily. It took exactly one week to find a match and on April 10 th at 9:30 p.m. he went into surgery. The Drs weren't sure he would make it thru because he was so sick. He was literally within a days of dying. His body was shutting down. He made it thru the transplant but had to be kept on dialysis for 3 weeks after the transplant before his kidneys slowly started to work again. He was left on a ventilator for a week because his lungs were so weak. Atyer3 more weeks in the hospital two stints put in his bile ducts and several other procedures he was able to leave the hospital and stay at his sister's that was about 15 mins. from the hospital/ transplant center. He was slowly recovering. He was so sick before transplant they told us to expect a long recovery. At about 3 months post surgery he was doing pretty well, then in August his liver numbers spiked. Back to the hospital for 2 weeks. They found a narrowinvin his portal artery and had to put another stint in. Then the numbers continued to raised. They done several test, Ercp, ultrasounds, ct scans, and tons of blood work. They thought it was his Hep C causing the problems and damaging his new liver. It took over 3 weeks to get pre approval for the Hep C meds. He is bow taking Harvoni and Ribavirin. These meds cost over 50 thousand dollars a month. Our cost is $1,163 a month. We are on a fixed income living only on his disability at this time. I lost my job because he needed constant care. Our transplant center is nearly 2 hours away. We have hospital bills over $20,000, that insurance hasn't covered. Every visit to the transplant center cost at least $20 for gas. Sometimes we have to go 2-3 times a week depending on his labs. He had a biopsy done in November. His liver levels are finally returning to normal and the Hep C medications ate working extremely well. His viral load was over 9 million when he started treatment 6 weeks ago.His viral load count is now 25 thousand. The medications are working and getting rid of this horrible disease that caused all of this to happen. We are in desperate need of help. We have hospital bills due, plus our rent and household bills. We have 2 underage children and an adult daughter who is finally getting ready to start college. His medications cost over$1,200 a month. He needs these medications to keep him alive and to cure the Hep C. Our monthly inco.e alone isn't even enough to cover the medications not counting everything else we owe. We are asking for anyone who can afford to donate to please help. Any amount will help we are in financial ruin and just trying to make it thru and be able to pays are bills, take care of our boys and of course my husband's heath is our number1 priority. Please share our post and donate if you can. Any amount helps even $10 or $20 dollars. Thank you for taking time to read our story. And please anything donations are desperately needed and greatly appreciated.

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danielle ginn

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