A busy fall

The past weekend I was in Vienna for a meeting with PH Europe. We were discussing the PH White Paper that PHA Europe has taken initiative to. We were also planning for the forthcoming Rare Disease Day events on February 29, 2012. Another issue on the agenda was the web site Time Matters, a campaign with the purpose to inform about and to create awareness about PH: http://phtimematters.org. Please visit the site and share your story!

Last week we went to the hospital for the 6-MWT and for the third time in a row he walked 411 meters. But compared to his last visit he wasn't that tired after the walk. For the first time he meet a pshysioterapeut, this first meeting the terapeut was asking questions but next time Elliot will do different kinds of tests. Elliots headache that I mentioned in the last blog message is better now since we reduced his Revatio dose from 3 pills a day to 2 pills a day.

This fall I have been working about one day a week with the Swedish PH association. This has been very fruitful and I have meet PH specialists, people from the pharmacy industry and I have got in contacts with patients. During these months I have learnt a lot about PH and about managing an association. This work gives me energy!

The kids are asking where the winter is, in Stockholm, Sweden, we haven't seen a snow flake yet and that is unusual.

I wish you all a Happy Christmas!

Hospital visit

Elliot has been going to school for about 1 month now and he really likes it. Compared to pre school the school days are more intensive and when it is time to go home he often is tired. The school have bought a wagon (the type you have behind a bicycle) that Elliot can use if he gets tired when they are going for longer excursions.

Today we have been at the hospital for a routine check. The 6-minutes walking test was okey and Elliot did walk 411 metres but he was tired afterwards. The examination by the doctor did not show any changes compared to the recent visits. It was decided that the Revatio dose should be increased.

I told the doctor and the PH-nurse about my involvment in the Swedish patient association and did handover information material. I also mentioned the result presented of Novartis about the cancer drug Imatinib at ERS in Amsterdam 26th of September. The drug have proven positive on PH patients regarding the 6 minutes walking test.