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.
Visst är det skönt med värmen? Och semester, underbart!
ReplyDeleteJag hittade hit på väldiga omvägar och har inget barn (alls :) ) med PAH men är nyfiken på sjukdomen eftersom jag själv har stora svårigheter med andningen numer.
Hoppas du och familjen får en underbar helg! :)
Hej Lix matte, är det så att du misstänker att du har PAH? Det finns några bra sajter om sjukdomen bl.a. pah-forum.se där det finns en hel del information att läsa.
ReplyDeleteHälsningar
Patrik
Ja, jag funderar på om det kan vara det som är felet, men mitt blodtryck är så pass lågt (117/77) att jag tvivlar en aning faktiskt.
ReplyDeleteHoppas du får en riktigt bra dag!
// L