This first entry is to update everyone on all that is happening in our lives right now. This is going to be a long post, but it will be difficult to explain one thing without explaining it all!
Many of you know that Chris has several health conditions he has struggled with off and on during his adult life. He has Ulcerative Colitis and Primary Sclerosing Cholangitis (which causes scarring of the liver bile ducts, which leads to liver cirrhosis). Mostly, these health challenges haven't interfered with his normal life in significant ways until recently. Over the past months, specifically the past 4 weeks or so, we have noticed a big decline in Chris’ overall health. He became jaundice, and about a week later we had an appointment with his liver doctor in Birmingham. We found out that his bilirubin count was extremely high at that appointment, and the doctor asked us to head back to Birmingham for an MRI/MRCP two days later. The following week we discovered that because of his condition and the damage his liver already has, he will need to begin taking steps toward a liver transplant.
The first step in this process was doing an ERCP procedure and Transplant Evaluation (2-3 days of medical tests, classes, and meetings that are a precursor to being placed on the transplant list). We headed to Birmingham early on April 4th to begin the process. The plan was to do the ERCP procedure and then rest for the weekend. Our Transplant Evaluation Appts were scheduled for the following week. Chris' procedure on Thursday went well. The doctor was hopeful that the small bile duct stones he was able to remove would give some relief to Chris' symptoms. He placed a stent in the duct to create flow that needed to be removed in a month. We realized the relief may be temporary, since the doctor estimated there were many small stones throughout the liver bile ducts.
We went back to the hotel that night, and by Friday morning Chris began experiencing severe pain, so we headed to the ER. He developed pancreatitis, which is a condition that can sometimes happen after the type of procedure he had done. He was admitted to the hospital in Birmingham on Friday evening and was discharged on Tuesday evening. During this time many of the Transplant Eval appointments were able to be complete in the hospital room. Wednesday he finished the appointments as an outpatient. Thursday afternoon we headed home! Chris seems to be improving from the pancreatitis, and we are very thankful for that! The treatment for pancreatitis is generally IV fluids and antibiotics. For someone who does not have liver cirrhosis this treatment plan works well. But with cirrhosis, pumping fluids into your body makes you retain water and become miserable from the swelling. As we've gotten home and Chris has been able to resume taking his diuretics, the swelling is slowly getting better.
During all the Transplant Appointments we discovered just how advanced Chris' condition truly has become. His MELD score is now 30, and we were told that when he is listed for transplant he should not have a long wait. This was hopeful news for us and we came home expecting to get everything ready and wait for the call! We did get a call from the Liver Team this week, but it was to tell us they would like to wait for 6 weeks before listing Chris on the transplant list. Because they estimate he will go quickly, they want to be sure he is completely recovered from the episode of pancreatitis. They want him to be stronger and in a better place to handle a long surgery and recovery. He is on a special diet to prepare him, and also getting weekly labs (locally) that are being faxed to UAB. Chris was not cleared to go back to work until after the transplant and 3-6 month recovery time. When we left UAB they stressed that they want him to rest, recover strength from the hospital stay, and enjoy family time until the transplant.
We realize this is the beginning of what could be a long and hard journey, but we also see how God has already given us so much peace and comfort. I could go on and on about the many ways God has worked in the details of our lives, especially over this past year. He has been leading and guiding us in ways we haven't understood but it all makes complete sense now that we are at this point. We have limited perspective and only see the moment, but God sees the big picture. He is sovereign! We have complete confidence that He will continue to meet every need that we face.
Already we have been overwhelmed by the love and care from our family, church family, good friends, neighbors, and co-workers. What a blessing to walk through a hard journey and know we have a large community of people who love and care for us so well. So many people have reached out with offers to help, and we are so grateful! Soon we will be updating this page with ways you can help if you feel led to do so.
Will you join us in prayer? For Chris and our family - for healing, comfort, encouragement, provision. And mostly that we will be able to glorify God in every step of this journey.
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