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.

Back in town

Back in town after two months in our cottage. It is always kind of strange to come back to Stockholm after being in the countryside. While we are in the cottage life is simple and without routines, we wake up and if it is nice weather, perhaps we go to the lake or into the forest. Days passes by. This summer was the first with three children and that was kind of interesting; there is always someone who is tired, hungry, in a bad mood, or pulling your leg. Now we're back in our daily life routines; work, child care, dinner, sleep. We are very satisfied with our summer holiday but now it feels good to have these routines.

Marie feels that Elliot have been more tired this summer, but I haven't noticed any differences. But I trust Marie's senses more than mine in this case. This week at the child care the staff have mentioned to us that Elliot has been more tired than usual. Next walking test will be in September.
Next week Elliot will be 5 years old. Every morning he wonders how many days it is left until birthday. Right now he is into Spider man and Spider man things tops his wish list.
This Sunday I look forward to an appointment with the chairman of PAH Europe who will come to Stockholm to attend a Cardiology conference. I will met her as a representative for the Swedish network for PAH. I haven't been working with the Swedish web page (http://www.pah-sverige.se/) during summer but before we went to our summer holiday I did start a Facebook group and now the group have 23 members.

Take care

Web site released!

Before I have written about the Swedish network for PAH and my ambition to get engaged in the network. Finally I decided to take the responsibility to create a web site for the network. This was the first time since 1997 that I have created a web site and I must say that a lot have happened during this time. When you created a web site in 1997 you had to write the HTML code and create the graphics by you own. Now days creating a web site can be done just by drag and drop. You simply choose what theme you wish to use and what features you want. I used the very popular blog/cms tool Wordpress and the result of my drags and drops you can see at: http://www.pah-sverige.se/. The information is in Swedish only. I have also started a facebook group where the network members can get together virtually and exchange experiences. A question to you who reads this, are you member of a facebook group dedicated for PAH? I have not found an international facebook group for PAH, have you? Or, should I start such a group?

Yesterday Elliot did the 6 minutes walking test again but this time my wife, Marie, went with Elliot and I have not the numbers but Marie told me that he didn't walk as long as the last time but in the other hand his saturation and pulse was better this time. Last week Ida, our daughter, was examined by a doctor to make sure she doesn't have PAH. The result was positive and now both Olle and Ida have been examined.

Last week’s we have had real summer weather in Stockholm and now it's only 4 weeks until my summer vacation starts.