My name is Wim. I am 53 years old, and I am here to talk about using oxygen because of my disease, pulmonary hypertension (PH).
My journey began in 2011. In fact, it started long before that, because I had symptoms for years before I knew what was wrong. In 2011, doctors carried out some tests and told me that I had pulmonary hypertension. Hearing that diagnosis was a shock to the system. At first, it felt like a grieving process, because it meant that a lot of things in my life had changed, and that more things would change in the future.
I also had a sleep test, where they measured the amount of oxygen in my blood. After that, they decided that I would need to use an oxygen machine every night for the rest of my life, because there is no cure for PH yet. I still hope that one day they will find one. Until then, I use my oxygen machine every night. I also need oxygen when I exercise, go for longer walks, or do other physical activities. For that, I have a portable oxygen machine as well.
The portable machine came about a year after I started using oxygen at night. At that time, I was having tests every three or four months, and the results were going downhill. My medical team said there was a possibility that I would also need oxygen during the day. That had a real impact on how I thought about my life. I have a family – we are a family of four – and I still need to work and pay the bills. You also start thinking about how oxygen therapy might affect your professional life.
I was not really prepared for it. When they told me I would need a portable oxygen machine, many things went through my head. But after a couple of months, you learn to live with it. One thing you have to get used to is that, when you need oxygen in public, people may look at you in the street.
I was also worried that oxygen would restrict me, especially when travelling. And it does mean that you have to plan ahead. But over the years, I have found a good system that allows me to keep travelling and to continue working full-time.
For me, it is easier than for some other patients, because I do not need oxygen 24 hours a day. But I always have it with me in case the oxygen levels in my blood drop and I need to use it. The main restriction I was afraid of was travelling, because we like to travel as a family. When you are on oxygen, you cannot simply decide at the last minute to book a flight and go on holiday. I usually have to plan about six weeks in advance. I need to know where we are going, what transport we will use, and what arrangements need to be made.
Here in Belgium, we have a very good system that helps with this. For example, if I am travelling to Italy on a certain date, I can contact a provider and tell them what type of oxygen machine I need. They arrange for it to be delivered there. We pay for the service, of course, but in Belgium we receive support through the health system, which makes it affordable for us. It also means I do not have to travel with all the equipment, and they collect it again when we leave.
That has been a big help. It has meant that I have still been able to tick some items off my bucket list. For example, I wanted to travel to New York. You have to plan such a trip carefully, but it is possible. The only real limitation was battery life, but there were solutions for that too. I received extra batteries from the hospital, and you need to stay in close contact with the airline if you are flying.
Unfortunately, you cannot always choose the cheapest airline, because some airlines may refuse to allow you to take an oxygen machine on board. Over the years, I have learned which airlines are very good in this respect, and I try to use them whenever I can. I plan in advance and contact them ahead of time. When you do that, it usually works very well, because they know in advance that you are coming. If needed, they can also provide oxygen from the aircraft itself.
That is how I live now. I have adapted to the fact that I need oxygen. When you are first told that you need to use oxygen, it is a shock, because you hope you will never need it. It does take time to get used to, but in the end there can still be a good quality of life with oxygen.
You need to plan more carefully. You need to think about where you are going, how long it will take, how long you will be away, and what you will be doing. Those are the things you need to consider. But oxygen does not have to restrict your life so much that you cannot do anything anymore.
Some people may think, “That’s it. I am stuck at home and I will not be able to do anything.” But that is not the case. There are solutions. You can use a portable machine. You can have extra batteries if you need them. And if you have friends or family around you, use that support network. My friends often help me with my oxygen equipment. I carry it in a backpack, and it can be heavy at times, so they take it over for me when needed.
The equipment has also improved over the years. My current portable machine is about half the size of the first one I had, and the batteries last longer. The machines are getting smaller, lighter, and easier to carry. There are also trolleys that you can use so you do not have to carry the machine in a backpack. I prefer a backpack, but many people use trolleys.
I know several patients in our group, and over the years I have seen the machines really shrink in size and become less heavy. There are now different types of oxygen equipment. I have a machine for night-time use, which is much bigger than the portable one and makes quite a lot of noise, but we have got used to it.