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.

Our 2009

Tonight I have been on a lecture about sourdough (surdeg in Swedish) and it was very interesting and inspiring. My interest in baking has grown this fall and as I have become better I find it more and more difficult to buy bread at the grocery (it's a difference between bread and bread and my bread is 10 times better compared with the bread you will find in an ordinary store, I promise;)).

Time to summarize the year. 2009 have been a year with many ups and downs. The first months was probably the worst in my/our life, we were still in shock after the meeting with the doctors and everything was like a black hole (and I lost most of my hearing during 4 months). In the middle of this we found out that Marie was pregnant again. From Mars, April things have become much better. The fact that both I and Marie have been able to stay home together since then is one of the reasons, another is of course that Elliot's condition have been stable. And then of course we got our baby Ida a sunny day in September.

Since mid November Marie have noticed that Elliot have been more tired (maybe me to, but I'm not convinced) and last week the staff from preschool also said that Elliot have been more tired lately. Bang, and it feels like you are balancing on the edge again. A couple of days ago we went to the hospital to do the last routine check for this year. Elliot did not walk as long as he have walked before, but the other tests did not indicate that his condition have been worse. The Swedish winter that is dark, cold, and long is hard on people with PAH.

Soon it's Christmas and I do hope for a long weekend with no surprises. Last Christmas eve we had to drive to the local hospital near our cottage with Elliot and this I don not want to do this year.

Notch-3

Scientist in the US have discovered that PAH is characterized by overexpression of the protein Notch-3. The discovery, presented 25th of October, is described as ground breaking for future medicins for PAH. It will be interesting to see how long it will take from discovery to a medicine. 5 years, 10 years?

http://health.ucsd.edu/news/2009/10-26-pulmonary-arterial-hypertension.htm

PAH meeting in Stockholm

Two weeks ago I and Marie went to a meeting that was arranged by the Swedish network for people with PAH. The information about the meeting reached me from a contact in the Norwegian PAH-forum just a few days before the meeting (thanks Kristen). The meeting was financed by Actelion, the company behind the medicine Tracleer (bosentan). The person representing the company said that only 5-7 children use Tracleer in Sweden. Both Olle (16 months) and Ida (4 weeks) did come along at the meeting, so it was hard to stay focus all the time;)
For me and my wife this was the first time we met other persons with the diseases in real life. About 20 persons with PAH came to the meeting and it was interesting to hear their stories. If I remember correctly none of the participants was diagnosed with PAH before 2005. What I have read about the disease, woman between 20 and 40 is an over represented group but most of the participants was woman +60. I wonder why?
The main purpose was to get people with the disease together, but the network also had invited a PAH specialist and his team from the PAH center at Karolinska University Hospital in Stockholm. For me it was news that it did exist a PAH center in Stockholm. This center is for adults only and not for children, but still I think it is strange that they have not told us about this center at the Astrid Lindgrens Child Hospital where Elliot is a patient.
Today the people behind the network consist only of three amazing persons and this, I think, was the 3rd or 4th network meeting they arranged. We were the only ones with a child with PAH at the meeting and after the meeting a volunteered to become a member in the network and a contact to other parents with children with PAH.





The photo shows Elliots drawing of our family. This was the first time ever that he was drawing humans at home.

Condition test

Last week Elliot did the condition test again and his condition has not been worse since he did the test in May. Hopefully Elliot will get the flu vaccine this month. So far the weather has been fine in Stockholm, which means the children at kinder garden have been outside most of the time and Elliot has been free from diseases.

The chart shows the result after Elliots condition test from the start in December 2008 until the last one in October 2009. The condition test is simple, he walks for 6 minutes in normal pace. The vertical axis shows Meters/Sat before and after/Pulse before/after and the Horizonalt axis shows when he did the test.