Big John’s Big Fight

First and foremost I really want to thank everyone who has been keeping my dad and our family in your thoughts and prayers through this very difficult time. The support, kind words, and prayers have definitely helped lighten our load while constantly reminding us how blessed we are to have all of you. We have felt all the love with no way to really express or explain how much it means. Thank you doesn’t encompass the true appreciation we all have had for everyone’s kindness.

As for my dad’s condition I will give you guys an insight of how the last two and a half months have gone. It began at the very ending of July with sever abdominal pain. We took him on august 3rd to st.Mary’s Greensboro where they saw he had early onset cirrhosis of the liver along with a thrombosis (blood clot) in the veins around the liver. They treated him just for pain. A few days later we ended up at st.Mary’s in athens where they saw the same and gave him blood thinners to break down the blood clot. They said the pain was from hypertension in the veins constricting the clot. That next week at home slowly but surely he seemed to be feeling better and began trying to get back to normal. August 15th my brother and I took our dad back to athens because his pain had become incredibly sever again over night. This time they saw air bubbles in the abdomen meaning that he had tiny perforations in his intestines leaking to his abdomen. They admitted him immediately since this can cause infections such as sepsis. My mom had been in Wisconsin for a girls trip at the time and had to quickly hop on the first plane out of the twin cities to come back to Atlanta. The first goal was to keep him on antibiotics and see if the perforations would heal on their own. Being diabetic it is never taken lightly to open him up. However on August 18th they saw that some of his intestinal tissue had become necrotic and had to remove about 4 inches of it. This was a major surgery, but he did very well. Afterwords, he was in Athens for a few weeks healing up. He was swelling with tons of fluid in his abdomen as well as had high bilirubin numbers as his liver was struggling to keep up during this time. They ended up releasing him home since they figured he was stable enough and would see progress. He was very glad to be home. For a little while it seemed like he was doing better. We had at home nurses and pt coming over as well as taking him to a different doctor’s appointment almost every day including with his liver doctor who thought maybe in a year or so he would be a candidate for a liver transplant if it doesn’t regenerate as well as they would like. He took a very quick turn for the worse starting right after that appointment the weekend of September 22nd. We had been told that Thursday prior his abdomen had filled up with fluid again and that the doctor would plan to do a paracentesis in the upcoming week. After the weekend we knew he couldn’t wait for this appointment. On September 26th, the day before his 57th birthday, my mom took him to Greensboro to get him drained. There they saw his kidneys were struggling and set him immediately to athens. On his birthday he had 3 gallons of fluid removed from his abdomen. They discovered then that his liver was in full failure. Athens worked quickly to get my dad transferred to Piedmont in Atlanta by September 29th. We spent two weeks there in the transplant unit doing everything possible to get him ready for a transplant. There are many requirements that the doctors and the patient need to do to be eligible. The main priority is making sure he is strong enough for the surgery. They discovered that the thrombosis was blocking his portal vein, the main vein used in the transplant. They did a TIPS procedure where they entered through his neck and inserted a catheter were able to break it up. It was a success. Piedmont also discovered he has an 80% blockage on an artery in his heart. After Piedmont saw where my dads heart is at they decided that they were unable to consider him as a liver transplant candidate anymore. They were concerned his heart would not be strong enough for the transplant as is and they did not feel that if they took action on the heart he would make it long enough for a transplant. This was incredibly difficult news to hear. We were told that if no other hospitals picked up his case they would send him home with comfort medication. They did send his case over to Emory University though and they picked up my dads case October 12th much to our relief. We have a new set of hope in this hospital and this transplant team. We are starting over some of the process to make sure he is fit for surgery. Right now we are double checking that portal vein, waiting to hear back hopefully the good news that it’s still open. They will drain his abdomen of the fluid build up again and hopefully be getting a stint or two in his heart by the end of this week. After you get stints you need to be on blood thinners for a month that prevent you from being able to get the transplant. They are hopeful after the stints they will be able to keep him stable through that month. The goal is to have him ready to be on that list in a months time. After a transplant there is tons of after care. A couple more weeks in the hospital along with months of constant travel back to the hospital for blood tests. We can’t wait to be making that drive back and forth with him in the car with us healing up.

As you can tell it’s been an unexpected battle the last couple months with a couple more left of to go. My brother, mom, grandma, and I have all been commuting a ton to be with him. The doctors say the support system is a big thing they consider before allowing someone on the transplant list. Between being off work, travel, food, lodging, and medical bills coming in we would really appreciate anything at all towards making it possible for is to be there for my dad through this scary and tough time. Thank you so much for taking the time to read through my dads journey.