A "PHull" Day....

In the Pulmonary Hypertension community we usually shorten "Pulmonary Hypertension" to "PH" to make things easier. We also like to identify each other as "phriends" instead of "friends" and sometimes "phamily" instead of "family." So, in the title of this particular blog, "phull" is actually "full." But, the point of writing "phull" instead of "full" is to point out that yesterday had a couple of "PH" experiences and/or coincidences and/or guidance from God.
We have FINALLY entered the last stage of our house project!! Yesterday the wood floor guy showed up. I was showing him around while having on my oxygen (like a good little girl!) and he asked what was wrong with me. I started up my normal response of, "Well, I have a rare lung disease." He asked what it was called and I told him "Pulmonary Hypertension." Well, he got this horrific look on his face and told me that his dad died of PH in 2001! Well, I've had people misinterpret "Pulmonary Hypertension" as regular systemic hypertension (high blood pressure) before so I went on to say that "Well, things have changed quite a bit in the last 6 years. I'm actually on a great medicine called 'Flolan.'" Flolan, for any of you that don't know is the IV medicine I get through a central line with the help of a pump that I wear around my waist. I have it on 24/7. It does not cure the disease but it does help significantly with the ph symptoms. So, anyway, when I mentioned Flolan, he said, "Yah, my dad was on Flolan too." Well, that completely blew me away! So, his dad DID have PH! And here was this kid whose dad died of a rare lung disease, working on the floors of a woman with the same rare lung disease! We visited a bit longer and he looked so very sad. I asked him if he was ok to work here. That I felt so bad for him. That it might be really hard for him to come to this job and see this daily reminder of what his dad and his family had to go through. He told me, "Oh, don't worry about me! I'm worried about you!"
So, I posted this encounter on the PHA discussion boards telling phriends that I felt like "dog meat" because this poor kid kept looking at me with this sad, sad face. As is typical with the group of phriends, they put things in perspective for me and reminded me that this was probably no coincidence that out of all of the homes in Omaha, this guy ends up working at our home. They felt strongly that this was the work of our Lord. They also suggested I talk to him about our "Phenomenal Hope for a Cure" fundraiser we are having this November 17th and see if he and/or his mom might like to attend. They also explained that he might have also been put on this job so that he could have an opportunity to do some healing. Maybe helping me out will help him feel like he's doing something for his dad.
So today when he came, he sat down and asked me how I was feeling. I told him I was doing great and then told him a bit about our fundraiser and asked if he thought he might be interested in going. He was thrilled He also said he knew his mom would like to go to! When he's finished with the job (which will hopefully be Monday or Tuesday....have I told you lately how tired I am of this project????) I'm going to give him a PH awareness band for both he and his mom.
So, now here comes an even stranger twist...his dad used to work in the lab with Rod (my husband) at the Med Center!! When I called Rod and asked him if he knew this guy, he was all excited and told me what a great guy he had been, etc., etc., etc. When I asked Rod if he knew that that guy died of PH, he said, 'Yes, I was aware of that." That statement with his voice and look reminded me that my dear sweet husband knows way too much about this horrible disease. It breaks my heart that he has to live with that knowledge.....
Anyway, after all of this happened yesterday, I received a phone call last night from a friend who is a respiratory therapist. She had just met a new patient who had just been diagnosed with PH and was having a lot of anxiety and was really scared. She asked if it would be ok if she gave this young woman my name and phone number. Of course I told her that I would love to visit with her and share as much as I could. I'm a very, very firm believer that knowledge is power. I hope that she will contact me.
So, that is the story of my "PHull" day. Thanks for reading.
:)
Annette