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.

411 metres

Two weeks ago I and Elliot went to the hospital for the 6-minutes walking test. We had been talking to Elliot about the test and that it is important that he walkes as many metres as he can. The thing is that Elliot likes to compete and this time really tried. He walked longer than he ever done before and afterwards he was tired. His saturation was as low as 84, but after two minutes it was up at 97. I think it is strange that the pulse was low after immediately after the test, I suspect that these figures aren't correct.

Click at the picture to enlarge it.

At the playground

I'm with Elliot and two of his friends at an enormous indoor playground. The kids have a tempo and Elliot tries to keep up but it is difficult for him.




This week we have made a visit to the school Elliot will begin after summer. Elliot says it feels both a bit creepy and exciting. I'm sure that he will do just fine. Monday I and Marie will meet the teachers and staff and inform them about Elliots disease. You who have kids at school with PAH, what are your experiences?

Wow, we have a car

Finally we have bought a car! The first car trip went to Lasse Åbergs museum north of Stockholm and in the picture you can see Elliot in front of his favourite super hero Spider man. Elliot has been sick in chicken pox for the past week so he was very happy to get out of the apartment.

Today was the first day at nursery school for Ida our baby girl. She will go at the same school as her brothers.

Public performance

March 16th I am invited to speak about beeing a parent to a child with PAH on a event arranged by the Swedish PAH association. I'm looking forward to the event and the possibility to meet new connections who are engaged in the disease.

You will find more information about the event at: www.pah-sverige.se (in Swedish)

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.