Most people never know someone who has had, or needs, a lung transplant. If they do know someone, it’s some ONE – a single person with whom, if they are close, they make this journey.
Currently I know 10 people in some stage of seeking a lung transplant. I love them, and watch them and I know that they are my future. I hope it’s a very long and distant future, but it’s there ready to creep up on me at any time.
This week I was talking with one of the 10. She’s having trouble with her oxygen company. Even though her insurance doesn’t limit the number of tanks she’s allowed to have, the provider – for some reason – is limiting her.
She’s budgeting her air.
Too much activity – too many trips out of the house, and she’s afraid she’s not going to have enough to make it to the end of the month. She’s fighting the battle, and I know she’ll win, but I can’t get the idea of having to plan your breathing out of my head.
Most of us with Hermansky-Pudlak Syndrome are legally blind. Many of us must use paratransit systems to get to doctor appointments or therapy sessions. In most places, paratransit is notoriously unreliable. You have to make ride appointments well in advance. You have a pick up time window – not a pick up time. Often they don’t arrive within the window and you can easily wait an extra half hour or more. You might get on “the little bus” only to discover four other people have to be dropped off at the far reaches of the county before you.
I have a few HPS friends in this position traveling back and forth to pulmonary rehab. They’re anxious – will I have enough air to get home? When they complain, the paratransit service tells them it’s their responsibility to travel with enough oxygen. Clearly these people have never had to budget their air while at the mercy of heartless strangers. Clearly they’ve never had to sit on the phone arguing to and fro with the insurance company and the oxygen provider.
I’ve had a bad cough since November.
Tonight I went to walk around the indoor track at my community center for a little exercise. Even though I wasn’t running, or pushing myself to the max, I started on a coughing jag that took 20 minutes to recover from. I felt as though I were gasping for air. The abuderol didn’t seem to help. Everyone at the gym noticed, wanted to bring me water etc. I couldn’t breathe enough to explain what was wrong for several minutes. I just kept coughing and gasping and wishing I could somehow melt into the floor.
On Friday I’m having pulmonary function tests. I’ve had dozens of these tests now, and I always get nervous beforehand. I miss the days of the drug trial when I had them every four months. It was frequent enough that any change in a negative direction was subtle. I almost got over the sense of worry.
This time, I’m back to worrying. It’s been six months since my last pulmonary function tests. This cough won’t go away. I’ve seen that before.
Am I creeping, or diving towards, budgeting my air?
Currently I know 10 people in some stage of seeking a lung transplant. I love them, and watch them and I know that they are my future. I hope it’s a very long and distant future, but it’s there ready to creep up on me at any time.
This week I was talking with one of the 10. She’s having trouble with her oxygen company. Even though her insurance doesn’t limit the number of tanks she’s allowed to have, the provider – for some reason – is limiting her.
She’s budgeting her air.
Too much activity – too many trips out of the house, and she’s afraid she’s not going to have enough to make it to the end of the month. She’s fighting the battle, and I know she’ll win, but I can’t get the idea of having to plan your breathing out of my head.
Most of us with Hermansky-Pudlak Syndrome are legally blind. Many of us must use paratransit systems to get to doctor appointments or therapy sessions. In most places, paratransit is notoriously unreliable. You have to make ride appointments well in advance. You have a pick up time window – not a pick up time. Often they don’t arrive within the window and you can easily wait an extra half hour or more. You might get on “the little bus” only to discover four other people have to be dropped off at the far reaches of the county before you.
I have a few HPS friends in this position traveling back and forth to pulmonary rehab. They’re anxious – will I have enough air to get home? When they complain, the paratransit service tells them it’s their responsibility to travel with enough oxygen. Clearly these people have never had to budget their air while at the mercy of heartless strangers. Clearly they’ve never had to sit on the phone arguing to and fro with the insurance company and the oxygen provider.
I’ve had a bad cough since November.
Tonight I went to walk around the indoor track at my community center for a little exercise. Even though I wasn’t running, or pushing myself to the max, I started on a coughing jag that took 20 minutes to recover from. I felt as though I were gasping for air. The abuderol didn’t seem to help. Everyone at the gym noticed, wanted to bring me water etc. I couldn’t breathe enough to explain what was wrong for several minutes. I just kept coughing and gasping and wishing I could somehow melt into the floor.
On Friday I’m having pulmonary function tests. I’ve had dozens of these tests now, and I always get nervous beforehand. I miss the days of the drug trial when I had them every four months. It was frequent enough that any change in a negative direction was subtle. I almost got over the sense of worry.
This time, I’m back to worrying. It’s been six months since my last pulmonary function tests. This cough won’t go away. I’ve seen that before.
Am I creeping, or diving towards, budgeting my air?
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