IPF is tough for the patient but it is just as tough, if not tougher for the carers. I can only say one thing, take good care of your lungs. Now I just cannot understand people who smoke and kill themselves and people around them with their smoke. I just can't. Smokers might sneer at me but if you've seen someone suffer from lung disease and know that your action might lead to it and yet still choose to do it.. that just seems stupid. Our lungs are not made to need to smoke.. so why do it? Just in case you are wondering, my father in law do not smoke.
When you have diabetes, or high blood pressure or heart problems, you bring your medication along and you can do almost anything. Even patient needing kidney dialysis, they get plugged into a machine a few hours a day and you are free. With respiratory problems, and when you need oxygen, you are tied to an oxygen tank and you cannot do much. When you've reached a stage when the concentrator is not generating enough oxygen for you and your only way of maintain enough oxygen in your blood for your internal organs to function is to be tied to an oxygen tank, your quality of life drop so low. We have a huge tank (those people use to fill helium balloons in mall) and you can't carry that without 2 men help, will only last you 7 hours. The medium tank which I struggle to carry myself will last about 3 hours. The portable tank will last 1.5 hour. Imagine having to hook up to either one for at least 18 hours a day (and the rest of the hours on the concentrator). We bring him out for a walks around the garden and this involve the nurse pushing his wheelchair and someone else pulling the medium tank along. We have to be constantly aware at how much oxygen is left in his tank. Any further than the garden, we call the ambulance.
For the patient, it means he is constantly worried, afraid and anxious. He is afraid there is not enough oxygen supply, he calls his carer at the very instant he is slightly uncomfortable or even before he is uncomfortable. Even when there is at least 1 backup tank he calls us furiously to tell he has no oxygen left. When we are late, it makes him anxious. During major holidays where the welding factory we go to to have his tank refilled is closed for a week, he gets a nervous breakdown. If we tell him the factory is closed on Saturday, he insist we drop by just to see if there's anybody working there. There's time when he called to say he needs his tank refilled urgently only to find it is not even empty yet. Can you now imagine the agony of having to rely on an oxygen supply. We understand and he admits mentally he is not the same as before, and I suspect his oxygen starved brain is suffering and contributing to all these behaviors. We try our best to give him what we can but the truth is, it is draining and frustrating for everyone.
Please don't read this blog and judge me for my impatience and complaints. You need to go through it and I've meant this for people going through what we are going through so you can catch a glimpse at what goes on and hopefully be prepared for it.
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