Adam Kupiec – My CTEPH story
Adam Kupiec, 33, was diagnosed with Chronic Thromboembolic Pulmonary Hypertension in January 2018. This is his story.
I was diagnosed with CTEPH in January 2018 at the Hammersmith Hospital in London and I had a pulmonary endarterectomy operation at the Royal Papworth Hospital in Cambridge seven months later.
I would like to share my story and tell you about some aspects of my illness.
From diagnosis to surgery
My pulmonary embolism health problems began in April 2017. The symptoms got worse.
In September, I ran out of air going up the stairs to visit a doctor who was a respiratory consultant. He immediately decided to direct me to the Hammersmith Hospital in London for additional research, where a fantastic PH team made an official diagnosis of CTEPH and recommended pulmonary endarterectomy surgery.
Everything has been moving very quickly since then.
Soon after, I received an invitation from the Papworth Hospital in Cambridge where the operation was going to take place.
On Tuesday 10 July 2018 I underwent the surgery which turned out to be a great success. This changed my whole life.
After being officially diagnosed by my PH centre, I wanted to learn as much as possible about my illness.
I started with the internet and after browsing Wikipedia and various medical portals, I came across phauk.org. This turned out to be the largest and most useful source of knowledge, advice and information about my illness and its treatment. After subscribing to the phauk.org website, within a few days I received a brochure which I read thoroughly. This helped me and those close to me to understand the disease better.
With PH, I soon discovered that receiving empathy would not be an easy task.
Who wants to listen to daily complaints of pain, problems with breathing or of not being able to complete basic activities?
In my case, I was told many times that I looked great and healthy.
The lack of empathy was noticeable in shops and public places where the fast pace of life leaves slower and weaker people behind.
As my disease deteriorated, I felt more and more helpless. I didn’t have the strength to tie laces or raise a cup of tea,to climb stairs or even to reach the bathroom. Every move was a tremendous effort and a fight with my body. When I showed up at the emergency room with dyspnea and palpitations, the doctor told me that my symptoms were caused by the weather conditions…
I discovered that receiving empathy would not be an easy task
At this stage family, friends and relatives played a powerful role. Malwina, my fiancé, never doubted me for a moment. She was with me all the time, supportive and helpful in every moment, spreading calm, warmth and love I so dearly needed.
My sister arrived from Germany shortly before I had the surgery. Thanks to her I had a sense of closeness to my family.
If you feel lack of empathy and lack of understanding, talking to the closest person or friend is the best medicine. If you do not have such a person with you, contact PHA UK and you will certainly receive support from them.
Pulmonary hypertension is a very serious disease that can affect each of us at different ages. This disease has a large and negative impact on the life of the patient and the life of the family. However, there are also positive aspects of this disease.
Thanks to my diagnosis, after many years my family has reunited. I also understood how important it is to lead a healthy lifestyle and how important it is to help others.
We often do not realise how many people help us to get better. Work between hospitals, doctors, nurses and consultants is coordinated over our recovery. There are also various research and scientific centres that are constantly inventing new methods of treatment. I can safely say that several hundred people contribute to the treatment of one person. I would like to thank at least some of these people.
I would like to send special thanks to:
Hematology & Warfarin Clinic at Stoke Mandeville Hospital, Aylesbury
Papworth Hospital and Dr. Steven Tsui, the cardiothoracic surgeon who saved my life.
Dr. David Jenkins, Consultant Cardiothoracic Surgeon at Papworth.
Anie Ponnaberanam, Lead Nurse for Pulmonary Endarterectomy at Papworth.
A&E Department at Stoke Mandeville Hospital
High Wycombe Hospital Cardiac unit.
The UK CTEPH Facebook group and PHA UK.
My fiancé Malwina, my sister Ewa, my parents and friends.
And all those who indirectly and directly participated in my treatment.