There is always time in life for an adventure.

01.03.2016
Patient stories

I am living an interesting and varied life. In my youth I travelled the world and spent several years working overseas doing many different jobs; I didn’t specialise in one thing. I feel as if I really lived before starting married life. I had seen and done a lot already and marriage was the next step. Women do it all the time now, but back then in the 1970s it was unusual to start a family in your thirties.

When I was 45 years old I was diagnosed with chronic lymphocytic leukaemia (CLL). My sons were young (6, 8 and 10) so it was shocking to find out that I had an incurable chronic disease. When I was first diagnosed the consultant told me that, although she couldn’t cure me, her job was to keep me healthy until such a time when new drugs were developed that would suit me. I trusted her and stayed with her for 25 years.

My journey has not been straightforward. I have been through very difficult times. I had to have chemotherapy. I almost died when I had my gall bladder removed and it went badly wrong – my platelet count was so low they couldn’t stop me bleeding. My eldest son, a doctor, who was working in New Zealand at the time, had to fly home because they thought I was going to die. It wasn’t easy, but I survived and kept on going.

It had always been our dream to design and build our own home. We bought a plot of land in Looe in Cornwall. It is a traditional seaside town with a strong fishing industry and lots going on throughout the year, including music and literary festivals. The land we bought overlooks the river estuary, on one side you see the town’s sparkly lights, and opposite you see the woods and their changing colours. It wasn’t the simplest house to build – it’s on a 45 degree slope – which presented a challenge for my husband, who used to work in construction. I did most of the interiors because I have experience of interior design. The house was built within eight months, which was surprisingly efficient. That project was a big adventure, and the outcome is wonderful: we love our home.

People should not worry about doing infusions themselves at home – it gives you so much freedom by removing that elastic band that connects you to the hospital.

Before moving here we had lived in the same village for 25 years. At first people were concerned about my health when I told them we were moving. Living with leukaemia for so long, my immune system had deteriorated meaning I was susceptible to infections. I was given immunoglobulin intravenously in the winter as that was when they thought I needed protection the most. I would often get sick because my immune system was not fighting infections properly. When we moved to Cornwall three years ago, I expected I would continue with my seasonal immunoglobulin boosts in winter. However, unlike my former hospital, Derriford Hospital has a dedicated immunology department. I was referred to an immunology consultant, who did lots of blood tests. She rang me on Christmas Eve and asked me to come to the hospital. She explained that my immune levels were very low and I needed to start weekly intravenous immunoglobulin therapy.

My immunology team are amazing: they are warm, helpful and kind people. I can ring them whenever I want. There are all sorts of people treated at the centre from a spectrum of generations – from youngsters to elderly people – all there for a variety of reasons and all of them in good hands.

I was asked if I wanted to take my immunoglobulin subcutaneously at home rather than come to the clinic every week. Home therapy opened up new possibilities of freedom and travel. My nurse, Teddie Trump, showed me how to infuse myself and after visiting the centre every week for six weeks I was ready to infuse at home. Teddie visited my house to watch me infuse and make sure I was confident in what I was doing.

The switch from intravenous to subcutaneous treatment has given me real independence. I take care of my treatment myself. Since I started three years ago my health has improved and I have had only one episode of pleurisy. People should not worry about doing infusions themselves at home – it gives you so much freedom by removing that elastic band that connects you to the hospital. It’s wonderful – whoever invented it deserves an award. It is no exaggeration to say that Octapharma's human normal mmunoglobulin solution has changed my life.

My nurse, Teddie Trump, showed me how to infuse myself and after visiting the centre every week for six weeks I was ready to infuse at home.

Now I just go to the immunology centre for an annual check-up, and for the leukaemia I see my haematologist every three months. We are very lucky in the UK; I cannot begin to praise the National Health Service enough. If it wasn’t for the NHS I might not be alive today.

My greatest passion in life is sailing and since my husband retired we can spend more time on our yacht, which we share with friends. I don’t do grey, lumpy, stormy water; I prefer to sail calm seas under a shining sun. Last summer we spent nine weeks sailing around the Greek islands. It is amazing to think I am going on these adventures without a care in the world 26 years after being diagnosed with leukaemia. It’s an idyllic life. Sailing is the best way to explore the Greek islands, which are all beautiful, each in their own unique way. Even planning the route is an adventure because you have to wait until the wind changes. I take my human normal immunoglobulin solution with me on these voyages and store it in a little pink fridge underneath the chart table where we do our navigation planning.

Before I started home therapy, I had to think twice about doing anything because I was always tied to the hospital. Now I don’t have to think twice about it; wherever I am I infuse myself once a week and I know that I am protected. I have a belt which allows me to infuse while walking about or gardening, but I prefer putting my feet up for an hour to read a book.

I am a very positive, happy and active person. Apart from sailing, I do a lot of walking with my dog and I like keeping fit – I do Pilates. I’m creative: I like painting, I belong to a flower arranging club, and at the moment I am renovating an intricate old lamp. I enjoy socialising, cooking and hosting dinner parties. I also love spending time with my wonderful grandchildren. Life is there to be enjoyed and I believe there is always time in life for an adventure.

One size doesn’t fit all, every patient’s journey through life is different.

Teddie Trump, clinical nurse specialist in immunology, Plymouth Hospitals NHS Trust, UK

I look after immunodeficiency patients on immunoglobulin replacement home therapy.

When someone is diagnosed with an immunodeficiency they are often relieved to finally know the reason why they have been so ill for so long. After diagnosis they must come to terms with the fact that they have a chronic illness and will need treatment for the rest of their life.

I have 90 patients in my care and get to know each one well; it’s a lifelong relationship. We tell newly diagnosed patients about the immune system and explain what immunoglobulin replacement therapy involves. There are two main types of immunoglobulin administration: intravenous (into a vein) and subcutaneous (under the skin).

One size doesn’t fit all because every patient’s journey through life is different. You have a spectrum of patients, from the teenager struggling to accept that they have this condition and seeing it as a weakness, to the elderly person struggling to get to hospital for their infusion. Treatment also needs to be adaptable to changes in lifestyle. You have to look at every patient individually and find the right approach that works for them.

If subcutaneous treatment is selected, we teach the patient how to administer treatment themselves at home. We show them how to use the syringe and how to insert the needles. We go through everything, from the importance of cleanliness to the logistics of how products are delivered to their home. We take time with patients so that by the time they go home they are feeling very confident and happy. I love it when I do a home visit and I can see that the patient is so happy to be at home. I love knowing that treatment will just slot into their life, rather than them trying to slot their life into an infusion schedule.

In our clinic there is a picture of Patsy infusing Octapharma's human normal immunoglobulin solution while she is on her yacht. This is really inspiring and helps our new patients see that they can have that freedom too.

Keywords

Annual report

Immunology

Diseases & therapies