It's been a long time since I've written a health update. Mom is on her way to pick me up and I've got tons to do, so shouldn't be doing this either - but oh well. I haven't posted much about my health lately because there hasn't been much new to say. It isn't that everything is fine, but more that it's the same old stuff.
Friday I had my first appointment with my new local pulmo. doc. It was a great appointment and I like him. I feel like he "gets it" which, when you have something rare, isn't always a feeling you go away with on the first appointment.
I was very lucky to meet him at the American Thoracic Society meeting. Actually, I'm surprised we didn't scare him away! He came to the booth looking for information about HPS because he knew he had a new patient coming in with it. As I'd just made the appointment, I took a chance and asked him if he was from KUMed. He said he was, and I introduced myself as his new patient.
He got lots of info about HPS, hugs from Donna and the twins and someone from the Coalition for Pulmonary Fibrosis we were chatting with as he came up. He got the story of my life from Donna - giggle. And still, he's taking me on! You've got to give the guy kudos!
My pulmonary function tests were all pretty much the same as before, but the DLCO is still a bit low.
One of this doc's areas of specialty is pre and post lung transplant care. We had a talk about when that "day" arrives.
He seems a little concerned that I might be developing pulmonary hypertension and so I'm having some tests done on my heart. It isn't so much that I didn't already know I was at high risk for developing this complication, but the suggestion did rattle me a bit. The other HPS'ers that I've known with this complication developed it when they were much closer to needing a transplant than I perceive myself to be. Still, if it is there, it's still quite mild and hopefully can be treated (although there isn't really a cure for it - story of my life!)
Friday I had my first appointment with my new local pulmo. doc. It was a great appointment and I like him. I feel like he "gets it" which, when you have something rare, isn't always a feeling you go away with on the first appointment.
I was very lucky to meet him at the American Thoracic Society meeting. Actually, I'm surprised we didn't scare him away! He came to the booth looking for information about HPS because he knew he had a new patient coming in with it. As I'd just made the appointment, I took a chance and asked him if he was from KUMed. He said he was, and I introduced myself as his new patient.
He got lots of info about HPS, hugs from Donna and the twins and someone from the Coalition for Pulmonary Fibrosis we were chatting with as he came up. He got the story of my life from Donna - giggle. And still, he's taking me on! You've got to give the guy kudos!
My pulmonary function tests were all pretty much the same as before, but the DLCO is still a bit low.
One of this doc's areas of specialty is pre and post lung transplant care. We had a talk about when that "day" arrives.
He seems a little concerned that I might be developing pulmonary hypertension and so I'm having some tests done on my heart. It isn't so much that I didn't already know I was at high risk for developing this complication, but the suggestion did rattle me a bit. The other HPS'ers that I've known with this complication developed it when they were much closer to needing a transplant than I perceive myself to be. Still, if it is there, it's still quite mild and hopefully can be treated (although there isn't really a cure for it - story of my life!)
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