Time for sharing :)
While at the hospital for Dry-Run 2 the doctors had some concern about a previous echocardiogram. The results showed some deterioration of Laura's heart performance. After speaking to the doctors at UCSF and while we where there, Laura completed another normal echocardiogram as well as a thoracic echocardiogram. Given the size of Laura's lungs and their condition it was difficult to determine any definitive results from those test. The next step, more tests.
Last week we went back to the hospital and Laura had a MUGA scan. A MUGA scan is a multigated acquisition scan that creates video and still images of the ventricles to check whether they are pumping blood properly. She also had a left and right heart catheterization procedure to view inside the heart. The results of theses test were conclusive.
The good news is she has no blockages and the heart is clean. She has however lost some function of the heart and is classified as mild to moderate degradation of function. This resulted in her being de-activated from the transplant list. A tough mental blow. After 2 dry runs we thought we were close and this felt like a huge step backward.
The next step is to start a set of beta blockers, Carvedilol and Losartan to help improve the pumping function of the heart. Normally they re-test 2-3 months after starting the drugs, but in Laura's case they will do another echo in 1 month, to try to get her back on the transplant list as soon as possible.
Beyond this Laura has felt pretty poor, coughing for the first 4-5 hours of each day and will go back on IV antibiotics tomorrow. With the ORKAMBI it has been almost 5 months since she was last on IV, so her body has had sometime to recover and hopefully the results will be longer lasting and help control the sputum production.
The typical route for IV is 3 weeks and then she generally feels better for a period after. Since this is the first time while on ORKAMBI it will be interesting to see how well it works and if the benefits are longer lasting.
As always thank you for all of the notes and positive thoughts. Hope you are all well.
