Rare Disease Day 2012

Elliot on the top of a snow hill

After a long waiting the winter finally arrived to Stockholm for a couple of weeks, but now it seems like we're heading for springtime.

At our last visit to the hospital Elliot met a pshysioterapeut and last week we met her again and this time Elliot did some exercises that he enjoyed. He also got some exercises to do at home.

From now on it is the pshysioterapeut that will handle the 6-minutes walking test and she pushed Elliot (in a positive sense) to preform really well and he walked 455 meters! Unfortunately the saturation and pulse meter was broken so the pulse had to be taken manually. We have also met Elliot’s doctor for the usual examination (EKG and cardiac ultrasound) and the doctor couldn't see any changes, which we consider positive.

Elliot with physioterapeut

The day after tomorrow it is Rare Disease Day, but the Swedish patient association for PAH, which I now am chairman of, will not arrange any event. There has been a lot of administration with the association and not enough time to prepare. But I will attend a conference arranged by the association Rare Diseases Sweden on February 29.

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.

Chest pain and PAH?

Elliot is more aware of his disease and for the first time he doesn't want to take his medicines without us arguing with him. He often wants us to read a book about a girl who goes through the same kind of heart surgery that he did. In the book the surgery is performed by a doctor named Torsten and every time we read for him he says: “the doctor that mended my heart, his name is also Torsten”. And that is correct, it is the same doctor. Carolinas hjärta (Carolina’s heart) is the title of the book and I can recommend it if you know Swedish.
Quit often he says: "can you feel how much my heart is pounding". During our Christmas holiday Elliot said that it is aching in his chest, when we asked him if he had felt pain in the chest before he said yes but he also said that he deliberately had not told us so that we would not worry. When we asked Elliott’s doctor about this he told us that PAH patients can feel chest pains but that it is not common. Does anybody have similar experiences?
 Otherwise it is status quo, which is positive. Mentally he is preparing for school that starts this fall. He is curious and a bit nervous as most kids are.

Tired and angry



Spider-man

 Right now we're quit tired as a family. Elliot has been tired lately and when he is tired he can't control his temper and he explodes several times a day. This is frustrating for me and Marie, we try not to be dragged along, not to lose our temper, but it is difficult.
Last week we were at the hospital for Elliot routine control and the condition test result was similar to the two latest tests. This was positive because I feared that the test would show that he had become worse. We talked to Elliots doctor about two medicins that one of my readers had mentioned: Letairis (ambrisenten) and Tyvaso (treprostinil). The doctor was uncertain if they were available on the Swedish marked but he said that he would check it out.

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.