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

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.

Diagnosis: life crises

At the latest walking test Elliot managed to walk longer than before, but his saturation and pulse was higher than before. There were no indications from the heart and lung check with ultra sound that his condition had changed. Now days, that feels like positive news. Life really is strange.

Last week we had a meeting with the psychologist that we have met a couple of times since last spring when Elliot condition was worse. Elliot was with us and this time he wasn't really interested in talking about his disease, but still it was great to hear him discuss his life from his point of view with the psychologist. Yesterday me and Marie had a follow up meeting and we were told she couldn't see that Elliot was in a need to meet her right now. But, she said, she had written a diagnosis, and it said: life crises and there she has a point. We (me and Marie) are in a constant mode of life crises, sometimes it's better, sometimes it's worse.

Today I got a letter from the Swedish PAH group, they are asking for help to put up a web site and to contact medical companies for financial support. I will engage, but I haven't decided how yet.
Right now, we are so much looking forward to meet the spring. Yesterday, we had snow again, bah!


Finally, I really apreciate all the comments I get;)

Water animal

Heading home after this weeks bathing at the therapy pool at the hospital. The water is 34 degrees celsius so it is real nice and Elliot is a real water animal, he spends more time under the surface than above. This week it is time to take the walking test. The past month Elliot has been in a pretty good shape, hopefully the test will confirm that. Today ends winter in Stockholm if the weather forecasts are correct.

Job start

Ending my first week at work after I have been home about one year. Well, how does it feel? Fine, I must say but on the other hand it feels like I have abandoned Marie and the kids.
"Feel how my heart is pounding", Elliot has been saying lately. This does not have to do with pah, but never the less, I am worrying. Winter time is hard on people with pah and yes, Elliot is more tired. Sometimes it feels like being tired is a constant condition for him and maybe it is. Olle is now in the same kindergarden as Elliot and it feels fine that they have each other during day time.
I have not heard from the swedish pah association but hopefully there will be a start up meeting before springtime.