Aidan’s Progress – Update

Hello. First of all, I am fine and enjoying a normal life (be it with a few minor rules or hassles such as no sashimi or natto). Sorry for such a long silence but I have simply been busy getting on with things. I started working on a part-time basis last April. It was good to get out again but quite hard physically at first. Slowly my condition perked up and I will be working a bit more in the new academic year this April.
The biggest fear was my lungs. After a bout of pneumonia last February I was left with reduced lung capacity and suspected bronchiolitis obliterans. There was even talk of going for a lung transplant. I am very, very happy to say that I seem to be recovering and while I am not out jogging or playing tennis I am able to walk and cycle. Everyday begins here at the aptly named Makekirai Jinja.

The steps to Makekirai Jinja (or the Hate-Losing” or “I’m-not-going-to-lose” Shrine

It is only one step at a time but everything is going in the right direction.
Recently every week seems to have one anniversary or another. It is exactly 3 years since my initial diagnosis. It seems like a lifetime ago. Here I am on my way to check in at the hospital with my son who was then just weeks shot of turning two.

Feb 2011 Train to Ashiya (because the car broke down too!)

Here we are today.

Much more of a handful now. Feb 2014

He will be five very soon. He is home this week because the flu is doing the rounds at his kindergarten. As my immune system is still very weak I must take care not to catch anything like the flu (or even a cold, Rubella, Chicken Pox or any childhood disease as it would be no laughing matter for me. We don’t want him bringing anything home so he has to stay home. Hopefully my immune system will be up to speed by next winter but for now it is still very weak.
I got a shock recently when I had a Rubella jab (I must have all the inoculations against childhood diseases again as my body is a clean slate and I will come down with them once more). On the form, when it asked if I was suffering from any condition at present, I wrote “No.” The haematologist laughed, shook his head and reminded me that I did have a condition. He then wrote “AML” on the form. Ah, yes, I may feel on top of the world but will not be out of the woods for at least three years after the transplant.
In the meantime I am just enjoying life. Hopefully you are too. Time for another walk – a bit colder today!
Oh, and I mustn’t forget my daily regimen….

こんにちは。まず最初に、私は元気で普通の生活を楽しんでいます(制約や悩みはありますが。刺身や納豆は禁止というような他愛のないことで す)。随分長い間ご無沙汰してすみません。ただ、いろいろなことで忙しくしていました。昨年4月にはパートタイムで仕事を始めました。再び外 の世界に出るのは気持ちの良いことでしたが、当初は体力的にかなり大変でした。少しずつ体の状態は上がり、今年4月の新学期からは仕事量を増 やす予定です。

いちばんの不安材料は、私の肺の状態でした。昨年2月の肺炎罹患以来、肺機能が低下し閉塞性細気管支炎の疑いがあるとのこと。そうなれば肺移 植ということもあるそうです。非常に幸いなことに、状態は回復してきている模様。ジョギングやテニスは無理としても、歩いたり自転車に乗った りはできます。毎朝、私の一日はここ、その名もお誂向きの「まけきらい神社」から始まります。一歩ずつ、一段ずつですが、全てが良い方に向 かっています。

診断を受けて以来、ちょうど3年経ちました。もう随分昔のことのように感じます。写真は、入院先の医療機関へ向かう時のもの。息子が2歳の誕 生日を数週間後に控えていた頃です。


息子はもうすぐ5歳になります。今週は、通っている園でインフルエンザが流行っているため自宅待機です。私の免疫 力はまだとても弱くインフルエンザの類にかからないように気をつけなければならないのです(ただの風邪や、風疹、水疱瘡といった子供の病気も 同じく、私にとっては笑い事ではありません)。

最近ショックだったことは、風疹の予防接種をした時(私の体は白紙の状態なので、子供の頃に受けた予防接種を再度受けなければなりません)、 問診票に「現在、何か病気にかかっていますか」という質問がありました。「いいえ」を選んだところ、血液内科の主治医は「病気にはかかってい ますよ」と笑い、「AML(急性骨髄性白血病)」と記入されたのです。そうでした、有頂天になっているのかも知れませんが、移植後5年は安心 できないのです。