Bless Madalinn's Heart

This blog has been mainly focused on Madalinn and her health journey since late October last year.  We have loved that so many of you have followed along and are praying regularly for her.  In my last post I shared about how the boys went to Cincinnati for HHT scans, but I left out one of the boys...Josh, my husband.  At the time we were not ready to share about his findings yet.  Today I am sharing with you this new journey that we are on.  This might be a long post, but I think I should start at the beginning. All of his life, Josh has known he has HHT (Hereditary Hemorrhagic Telangiectasia) a blood vessel disease. It runs in his family and they affectionately refer to it as "the bloody nose disease". When Madalinn was diagnosed with Pulmonary Hypertension she was tested for the genes that cause HHT and was positive for ACRLV1.  It has been determined that that gene is what caused her PH because of disease in her pulmonary arteries.   Once she tested...

  Let's see.  Since the last update Madalinn has had an MRI, a sleep study, echo, lab work and visits with 2 cardiologist.  On Thursday, April 27 we went to Cincinnati to meet with Dr. Hirsch who is a Cardiologist who specializes in Pulmonary hypertension and HHT.  He showed us side by side photos of her heart from an echocardiogram from November and that day in April.  "The results are astonishing," he said.  The Lord used the medications to lower her pressures and allow her heart to heal.  In November her Right Ventricle (RV) was severely dilated and caused the Left Ventricle (LV) to be smaller than normal.  On the current echo her RV was much more proportionate and the LV was looking normal.  This was such encouraging news.   He says he looks for three things in his PH patients.  1. They are able to function during daily routine living.  2. Their tests are looking good  3. They are tolerating medications fine.  He ...