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June 8, 2010 - Appointment at Johns Hopkins Hospital

We wanted to update you on Greg's condition and tell you about the appointment that Greg had at Johns Hopkins.

Sometimes it's difficult to communicate the changes in Greg's condition or the steps that the doctors are taking because, just like with most other diseases, the transplant "world" seems to have its own language and way of doing things. Therefore, this post is going to be our best attempt at catching you up on Greg's health!

Yesterday we went to Johns Hopkins Hospital in Baltimore, MD for an appointment with Dr. Russell who is in charge of the transplant program. The main purpose of this appointment was to get a second opinion and to have Dr. Russell help Greg's doctors decide on the next steps to take while awaiting the transplant. This was our second time traveling to Johns Hopkins- we first went there in April to meet with Dr. Calkins who is the doctor who is in charge of the Arrhythmogenic Right Ventricular Dysplasia (ARVD) program. As we mentioned in an earlier post, Greg's doctors at INOVA hospital (our home hospital) had come to the conclusion that ARVD was the most likely cause for Greg's heart issues. During our first appointment at Hopkins, we met with a genetic counselor and they took a sample of Greg's blood so they could perform genetic testing.

We've been anxiously awaiting the test results for the past few months and finally got them yesterday. Greg's blood came back negative for ARVD. However, this doesn't mean that Greg does not have ARVD. Currently, geneticists have only isolated 5 genes that are linked to ARVD. While Greg does not have a mutation of any of these 5 genes, there could be other genes with mutations that code for ARVD that have not been discovered yet. In fact, the doctors have found that 50% of the patients who test negative for ARVD actually do have ARVD. At the same time, everyone who tests positive for ARVD does in fact have the disease. Getting a negative on the test doesn't give the doctors any new information to work with but getting a positive would. If Greg had tested positive, his immediate family would also undergo genetic testing to determine if they had the same genetic mutations as Greg- but because he tested negative they will not be tested. Greg will be giving a blood sample that will be used in research for the purpose of discovering more genes that are associated with ARVD.

While the genetic counselor was not able to give us helpful information, Dr. Russell certainly was. He is an expert at heart transplants and works closely with Dr. Calkins. Johns Hopkins is world-renowned for their clinical and educational excellence, and the transplant program is no exception. Because of the caliber of Johns Hopkins and Dr. Russell, we were extremely interested to hear his opinion on Greg's heart. After examining Greg and going through the details of Greg's medical history, Dr. Russell confirmed that every decision the doctors at INOVA have made thus far regarding Greg's heart have been correct. According to Dr. Russell, Greg's has all the symptoms that are typical of a patient with severe heart failure and Dr. Russell affirmed the excellence of the doctors at INOVA, the transplant program, and the post-transplant care that INOVA provides. We felt tremendously relieved after meeting with Dr. Russell. Knowing that he, an expert in the transplant field, is in agreement with Greg's doctors and hearing him recommend that Greg continue to be treated at INOVA instead of switching to Hopkins was very comforting. We are very grateful that we were able to meet with him!!

Moving forward, Dr. Russell suggested that Greg's doctors adjust his "dry weight" so that Greg is more comfortable. This would require them to increase his diuretics. They would continue to increase the diuretics until Greg's kidneys show signs of distress (one of the biggest risks of treating transplant patients is their other organs failing while waiting for the transplant). If this doesn't cause drastic drops in Greg's blood pressure or damage to Greg's kidneys, they may be able to keep Greg more comfortable while waiting for his heart. The doctors have been keeping some extra water on Greg to protect his kidneys and help his heart pump more effectively- but the trade off is that Greg's symptoms (abdominal pain and swelling, fatigue, decreased exercise tolerance, and increased shortness of breath) have increased. At the same time, we know that Greg is fortunate to be doing as well as he is. So many people are confined to the hospital while they await transplant and we have been so blessed that Greg has been stable enough to be home and return to work during this time.

While at Hopkins a specialized echocardiogram was done on Greg's right ventricle. This is part of the ARVD diagnosis process and will help the doctors determine if Greg's heart function is decreasing at an accelerating pace. If so, it will put more emphasis on getting a heart quickly instead of waiting for the perfect heart. We are hopeful that the input from Dr. Russell as well as the echocardiogram results will help Greg's doctors make the best decisions regarding his care, and we are so grateful for the chance to meet with Dr. Russell. Not only was it obvious that he is an excellent physician, but he was extremely kind to and supportive of us. What a blessing!

We both continue to meet with our counselors weekly and have really benefited from the chance to work through the issues that we are facing with someone who knows how to help people through traumatic situations. While Greg and I are walking down the same road together, we carry different burdens and are facing different trials, and because of this we are very blessed to have individual counseling sessions. Each day is still a struggle in many ways, but the Lord continues to be faithful and gives us enough grace to get us through each day (even when we think that we won't!).

Thank you for your continued prayers and support along this journey. We love you and are incredibly grateful for your presence in our lives!

Love, Elise

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