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!

Past weeks have been terrible and we need to find a solution

Elliot loses his temper far too many times a day. The most critical point is during the afternoon and almost every day he gets a big outburst when we get him from school. I don’t know how much of it that is connected to Elliot’s disease but I suppose the disease is a key factor.

Facts

• Elliot is tired after a day in school
• It’s getting colder and darker. In Sweden the temperature right now is about 3-5 degrees Celsius and it is dark when we wake up and it is getting darker every day.
• Elliot’s dose of Revatio has been doubled since our last visit at the PH-doctor.

If you have experiences that you would like to share or suggestions of how we can improve our situation please comment.  


Update: Elliot has been complaining about headace the past week and one of many potential side effects of Revatio is headace. Elliot today said that the headace easily gets him in a bad mood. 

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.

Thank you!

Last week I spent some fantastic days in Castelldelfels, 25 km, south of Barcelona, Spain. The reason why I was there was the General Annual Meeting of PHA Europe. I was invited as a member of PHA Sweden together with about 50 other members representing 20 countries in Europe (including Russia and Israel).

The meeting was very well arranged with presentations from leading PH-specialists, PH-nurses and the pharmacy industry. But the most important was the meetings with all the fantastic people that participated and who told me their stories about PAH. Many were living with the disease and quite a few had undergone double lung transplant and others had, like me, family members and friends with the disease.

After my return to Sweden I have been filled with lust and energy to work with PHA Sweden and I have decided that I will work about one day a week with the association from now on.

School start

All summer Elliot has been talking about the school start. "I'm very excited about it, but I think it is also a bit scarry", he has been saying. Now he has been at school for two weeks and made new friends and he is very positive about the school in general. Unfortunately he fell from a jungle gym (klätterställning) in the playground at school last week and got a fracture in his collar bone. He is in pain but he adopted the new situation quit well and now he uses his left arm insteed.

Together with the school staff we have been discussing how they can support Elliot when they are going on excursions and they proposed that the school could buy a cart where he can sit when his legs get tired. 

The first week Marie and Elliot told about Elliots disease for the other children in his group (about 50) and that Elliot probably will have special treatment when they go on excursions and that me must stop playing to catch his breath more often than other children. 

My big day

Together with 35 other families with children with life-threatening diseases we were invited to a motor racing event arranged by the foundation Min stora dag (My big day). Sunday the 21st of August was the day for the event and Elliot had been longing for this day all summer and I must say it was an amazing arrangement. About 60 racing cars, police cars and fire trucks came to the drag racing arena in Tierp.

The cars did race in pairs and in every racing car a child was in the passenger seat. Elliot tried Lambogini, Ferrari, Porsche, BMW, Mini and Morgan. There was also a racing show and different competitions. This is a day that Elliot will remember for the rest of his life.