Monday, June 30, 2014

Pulmonary Hypertension Clarification

We spoke with Dr. Fineman last night with a few follow-up questions about the two roads ahead of us. He informed us that if we choose surgery and it was successful, Roscoe will be started on the special drug called remodulin (which I mentioned in a prior blog post). Since the drug is relatively new, it can only be administered by a trained nurse, which means that Roscoe would stay at UCSF through the remainder of his recovery until he was ready to go home. With his severe chronic lung disease, this could be several months.

Dr. Fineman also clarified a little about Roscoe's pulmonary hypertension. He said that Roscoe actually has two forms of pulmonary hypertension. First, he has hypertension in the pulmonary arteries that go from his heart to his lungs, due to his chronic lung disease. He has this pulmonary hypertension on both sides. Second, he has hypertension in the pulmonary veins that go back from his lungs to his heart, due to pulmonary vein stenosis. He only has this pulmonary hypertension on the left side, because that is the side with the narrowed veins. The surgery would repair (either temporarily or long-term) the hypertension in his pulmonary veins. The aggressive treatments with remodulin and bosentan would hopefully repair the hypertension in his pulmonary arteries.


  1. Is this news of the pulmonary hypertension any better or worse than you had previously thought?
    Either way - we are praying! Love you three lots!!!

    1. He was pretty much just clarifying that pulmonary hypertension can happen in two ways, and since Roscoe has it in both it makes it more difficult to treat. It's like trying to fix a car that has a bad starter and bad valves.

  2. God has worked miracles in your little boy and we will continue to keep asking for more.
    Love you all.

  3. Poor little man! Look at his precious face!