“I’ve got my life back.”
When breathing becomes difficult
The first symptoms of pulmonary hypertension (PH) often occur during childhood. Those affected suddenly become faint and pass out out of nowhere. For others, it sometimes takes years until the symptoms increase: they get out of breath when walking to the car park, they can’t go up to the first floor on foot anymore. Many patients have difficulties carrying their children or playing with them. Most of them are unable to talk while walking because their heart cannot pump the blood, ergo the oxygen, properly anymore.
I thought there was perhaps a psychological reason for my symptoms: stress, work. I was in utter shock when I was then diagnosed with pulmonary hypertension.
PATIENT | VICE PRESIDENT PH AUSTRIA | VICE SECRETARY PHA EUROPE
Pulmonary hypertension – a chance finding
The diagnosis of PH or PAH sometimes happens by coincidence. However, it mostly comes at the end of a long ordeal, which even causes some patients to enter psychiatric institutions. They look for the problem in themselves, baseless fears or stress at work.
The diagnosis of pulmonary hypertension happened rather by coincidence as a doctor in Natters had recently undergone training and I was sent there.
PATIENT, TYROL
Forewarned is forearmed?
The diagnosis of PH/PAH represents the first step of a long journey. There are treatments that help most patients relatively quickly and well. However, some people also have to cope with setbacks, as tablets perhaps don’t work at all or not well enough.
Many medications were tried, with side effects and interactions. The doctors tried a lot of things, but I really wasn’t doing well with them and it took a toll on my mental health. I wanted to stop the infusion treatment, a doctor persuaded me to keep going. Things got better very slowly, but I had to take 15 tablets a day.
PATIENT, CARINTHIA
The sought-after improvement is usually achieved with pump treatment: the heart returns to its normal size, breathing becomes easier, even without additional oxygen. Quality of life increases.
Better quality of life, but ...
Some people still feel unwell with a subcutaneous pump. They often experience pain when inserting the subcutaneous needle or problems because the pump is fitted outside of the body. Showering and swimming are possible, but require specisl preparations such as waterproof bandages or waterproof containers for the pump. Patients with young children report pain when the child cuddles them or accidentally gets caught up in the pump tube.
With the pump, I can now go for a walk for two to three hours. I’m used to the pump, I am in pain for a week after inserting the needle, but it’s treatable with ointment. I’m very pragmatic about that. The pump helps me a lot. The pain doesn’t bother me much.PATIENT, VIENNA
PATIENT, VIENNA
During pump treatment, it is possible to have a subcutaneous pump, which is outside of the body, or an implantable pump. The latter is only used when those affected are doing well and they have suitable values (blood, heart). Due to the size of the implantable pump, it often cannot be used for very meager patients.
The implanting of the pump is a blessing for many people. And I no longer have any fear about it now that I know that the pump can be implanted.
PATIENT | VICE PRESIDENT PH AUSTRIA | VICE SECRETARY PHA EUROPE
After ten years, I wanted an implantable pump. At first, I was told I was too thin. But I didn’t give up.
And that was a new life for me. I became able to go swimming, and I could finally shower when I felt like it. I was no longer constantly reminded about it. This has hugely improved my quality of life.
PATIENT, LOWER AUSTRIA
Extending life for a lifetime
Most patients do better with pump treatment – no matter whether this is subcutaneous or implanted. Many can gradually do without or at least reduce medications in tablet form. It is always important during pump treatment that those affected know how to handle it, what needs to be kept in mind, and who they can contact when they need help.
A specially trained nurse who looks after and advises us was very helpful. You are shown how to insert the needle, which you absolutely have to do with a pump. Normal people without having been trained don’t know that. And I now have my fourth pump. I’m also happy to help other patients because I’ve had the illness for so long. Anyone can ring me at any time.
PATIENT, VIENNA
Taking control of life together
Caregivers are very important, particularly at the start of pump treatment. They provide precise training, explain the procedures and give patients the skill and confidence to look after the pump themselves and become more independent again. Adding to that, they are always available to answer questions or provide help in an emergency.
Self-help groups also make an important contribution. Interacting with those affected who know the illness and the treatment with its effects and side effects helps many patients to take control of their own lives again.
Some patients have an easier time when others are receiving the same treatment and they can talk about it. You can really take away the fear. After all, they often don’t know what to expect. It’s important that you have someone to talk to. Many people do better when they have contact with a self-help group.
PH AUSTRIA INITIATIVE PULMONARY HYPERTENSION