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.

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.

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