Road traveled (after years of multiple yearly hospitalizations since birth)
April 2011 – distal pancreatectomy (Removal of 70% of pancreas) and splenectomy (removal of spleen)
Nov. 2011 – first major varicies bleed due to portal vein thrombosis (blocked portal vein). Placed in ICU and receives blood transfusions
Jan. 2012 – Mesocaval shunt surgically placed to open blockage in portal vein. 1st attempt fails after 48 hrs. Second attempt fails after 9 months
June 2012 – diagnosed with hepatic encephalopathy. High levels of ammonia in blood causes much confusion and altered personality. A side affect of the shunt placement in portal vein.
July 2012 – repeated episodes of gastric paresis (paralyzed stomach muscles) and gastro obstruction leads to another surgery, gastro jejunostomy A bypass of small intestine
Oct. 2012 – shunt fails and attempts to unblock are unsuccessful. Advised Now at risk for major variceal bleeds that could end life. No additional surgical intervention with regards to pancreas or portal vein to be done.
April 2013 – another blockage! A hepatic bile duct stricture results in the insertion of a biliary drain tube to allow infected bile from around gallbladder to drain. Surgeons determine they are unable to safely get thru varicies and scar tissue to remove inflamed gallbladder.
May 2013 – 2 major variceal bleeds. The first occurs on way to Mayo E R. Thankfully we are right at exit in front of another hospital (Baptist South) as he begins vomiting large quantities of blood. BP only 60/40 when we get him inside. ER team was amazing as quickly got blood transfusions underway and got him stable. After conferring with his team of specialists at Mayo he was transported via life flight helicopter to their ICU.
4 days later, one day after leaving ICU , Dave suffers another major bleed in his hospital room. Later he remembers getting out of bed to reach for a basin, falling and crawling to reach for help button. Nurse finds him on floor in pool of bloody vomit. BP has again crashed to a low 60/40. Critical care team called, he is quickly moved back to ICU receiving blood transfusions and platelets. Procedure to band off 4 esophageal varicies is performed that may be the bleeders. Family advised he is very very sick and it would be a good time to call all family members.
His Mayo team, led by the wonderful Dr Michelle Lewis advises no more that they can do. Only hope is a 3 organ transplant. Dave needs a liver, pancreas and small bowel. Only 2 hospitals in country do the small bowel. Dr Debra Sudan of Duke is most highly recommended by head of Mayo liver transplant team, Dr. Justin Nguyen. We all agree (David, Skye and Mom). The call is made to Dr Sudan. She agrees to accept him for evaluation and plans to medevac Dave the next day are made. He was medivac’d because the risk of being out of hospital for any length of time (drive time 8 hrs) was too high. Also, the cabin pressure of commercial jet on his organs would be too severe. A smaller plane could fly lower and adjust cabin pressure. We were accompanied by an ICU medical team of 2.
May 29, 2013 – dave arrives from Jacksonville, Fl at Duke University Hospital and admitted to the transplant ICU unit.
The evaluation process begins!
The transplant team – 15 members!
-5 surgeons total led by Dr Debra Sudan, Chief Abdominal Transplant Surgeon -Pre-transplant coordinator -in patient transplant coordinator -Intestinal transplant coordinator -social worker -Financial coordinator -medical Psychologist -dietician -pharmacist -physical therapist -occupational therapist
The road to the Transplant!
1. Evaluation – met with every member individually. As an inpatient each member took turns introducing themselves and explaining their role.
2. Social worker explains to us to be considered we must agree to relocate temporarily to the Durham area. We could be here for 6 months or more. A list of apt complexes and extended stay hotels is provided. Mom rents a 2 bedroom furnished apt in a Duke Hospital approved complex within the approved minimum mile radius and driving distance.
Also advised must have 2 full time caregivers. Both must sign a contract stating will fulfill the role responsibilities. Dave’s Aunt Kathy (and author of this blog) decides she will also temporarily relocate away from her family in chicago area. Backups, but no less important, Skye when she is able to be here and Dave’s Aunt Jeanne in Tampa. It is explained 2 are required because 1 person by themselves will need a break, even if just for a few hours, or in event become ill. Dave, because of bleed history cannot be left alone. After surgery when released from hospital and recuperating he is also required to have 24/7 care.
Dave must also sign a contract stating he understands the commitment he is making after the transplant. A lifetime of medications and preventative maintenance to have the best possible chance against organ rejection. No drinking or smoking is critical. He signs.
Dave and mom are given several more documents calling out every possibility and phase of the pre and post transplant process. Each and every paragraph (there are a bunch!) must be initialed by Dave indicating he has read it and understands it. He initials and signs everything as both the good and potential bad is discussed.
3. Financial coordinator visits. Explains the cost will be in the $1 million to $1.7 million range for pre op, surgery, post op, family travel and living. He will have a lifetime of a huge amount of monthly medications and will need to travel back to Duke annually for checkups. They are in communication with insurance coverage. No coverage for travel and living. Waiting on approval for what % they will cover of medical. hopefully 80%, no confirmation until after evaluation completed. Assures him this is normal. Gives him brochures on how families can raise money to help defray the exorbitant costs he has not only already incurred but what lies is ahead. As expected, Dave is upset at the continued financial burden he feels he has put on his family
PLEASE OPEN DONATIONS TAB IF YOU WOULD LIKE TO OFFER FINANCIAL ASSISTANCE
. 4. Bubble Session – team meeting where all team members present their evaluation and recommendation. A big part of Dave’s evaluation included review of 220 pages of type written notes and copies of all scans, MRI’s. X-rays, etc from Mayo Clinic. Dave’s initial bubble session was held on tues 6/11. 5. Team agrees Dave is a viable candidate for a 3 organ visceral transplant and the plan is to be presented to Blue Cross for their support. Blue Cross notes some additional tests needed. Cardiac stress test. He will be fiven some medication that will simulate the stress of a 12 a 15 hr surgery on his body. Scheduled for tues 6/18/2013. Should be listed by thurs.