Kamil's Heart & Liver Transplant Fund

Shortly after birth, Kamil was diagnosed with complex congenital heart disease: mesocardiac double outlet and double inlet right ventricle transposed great arteries and mitral valve hypoplasia. Due to the abnormalities with his anatomy, Kamil's health has been on a slow but unrelenting decline. To slow down the progression of his disease, the medical team placed a Blalock shunt, a Glenn shunt, and created an Atriopulmonary (AP) Fontan circulation. Twenty years later, the AP Fontan was converted to an Extra-Cardiac Fontan circulation, along with placement of a composite aortic root with a mechanical prosthetic valve in the setting of severe aortic dilation anti-tachycardia epicardial dual-chamber pacemaker. At that time, his surgical team performed an Atrial Maze procedure to address atrial fibrillation. Currently, Kamil's Fontan circulation is failing to cause continuous large volume ascites, elevated Fontan and right heart pressures, severe left AV valve regurgitation, recurrent atrial arrhythmias. In addition, he has developed severe liver cirrhosis with grade 1 esophageal varices due to increased pressures in the right heart due to congenital heart defect.

 

There was always the talk about one day having to have a heart transplant, but it wasn't until one month before we got married, September 2017, that things took a downturn. Kamil had his pacemaker generator changed due to the battery being at the end of life and needing to be replaced. After the surgery, he developed fevers of unknown origin and developed ascites. For the next few months, Kamil battled fevers and other symptoms. He was hospitalized locally a few days before our wedding, and the week after at the Mayo Clinic. Kamil had about every test and consulted from all areas attempting to find the source of my fevers. He was sent home with IV antibiotics and readmitted after my two-week follow-up. His doctors were never able to find the source but believe that his Complex Congenital Heart disease was the cause. Since 2017 Kamil's condition has progressed and it was recommended that transplant was the next step. After two denials from other institutions (due to the complexity of dual organ transplant, specific requirements, and lack of resources), Dr. Andrew Sauer at KU Medical Center connected us to his counterparts at Vanderbilt University Medical Center. We completed our third invasive transplant evaluation, and after a week of waiting, we got the message that they had accepted Kamil for a Heart and Liver Transplant. With the support from our faith, family, friends, and work colleagues, we packed what we could into our car, held and kissed our daughter goodbye, and drove to Nashville, TN, from our home in Kansas City. Vanderbilt has said that about 20 heart and liver transplants have been performed nationwide in the past three years. Most have been done by them and the rest at Stanford University Medical Center in California. Vanderbilt requires a caretaker (Sara) and Kamil to reside near the hospital for a year post-transplant. Kamil is currently listed as a status 4, which enables him to reside at home while we wait for a donor. One of the hardest things is that we will have to leave our daughter behind for an unknown time (hopefully six months max, but we don't know). We have only been to Nashville once to visit Vanderbilt for the transplant evaluation. We do not have any family or friends in or near Nashville and are complete foreigners to the area. We have an apartment in which we have been residing since June 12th. We are taking it day by day and putting this in God's hands.

We are hoping to raise enough funds to support Kamil's medical expenses for his Heart & Liver transplant and to have enough funds to support us while Kamil and I are unable to work (Vanderbilt requires the caretaker to give 100% of their time and attention for the first 3-4 months if all goes well post-transplant)

Thank you for your prayers and your support!

*Please note that we have raised $17,647 with the National Foundation for Transplant. All of Kamil's expenses MUST be approved by NFT for reimbursement. Eligible expenses include medication, health/dental insurance premiums, hospital, physician, durable medical equipment, lab charges, mortgage/rent, utilities during the transplant recovery period, travel, food, and lodging related to pre/post-transplant medical care. We are allowed to submit for reimbursement up to three months past, not any further.