I'm lucky to be alive

I was at work and I started to feel pins and needles in my arm and on the left side of my body. My mouth started to droop. I later found out that I was having a mini stroke.

It had all started a few weeks earlier when I began to feel extremely tired and unwell. The whites of my eyes had turned yellow and I had one instance of blood in my urine. The doctor thought it might be anaemia but the blood test results didn’t come back in time.

What happened at work was very scary but thankfully my colleagues responded quickly and called an ambulance immediately. I was taken to the accident and emergency (A&E) department of Colchester General Hospital. They thought at first it might be a migraine. I was admitted to A&E and throughout the day my symptoms were getting increasingly worse. I was having blood taken when I began to have a seizure. At this point my memory goes blank.

The next thing I remember is waking up and seeing very bright lights. I was confused and didn’t know where I was. I had no memory of being transferred to University College London Hospital (UCLH) by ambulance. I was in the Critical Care Unit.

The nurses were very kind and patient with me. They had to tell me again and again that I had something called TTP (thrombotic thrombocytopenic purpura) and that it was very serious.

The nurses were very kind and patient with me. They had to tell me again and again that I had something called TTP (thrombotic thrombocytopenic purpura) and that it was very serious. I just could not believe that it was all that bad because I was feeling so much better than I had done for weeks. I had also woken up rather bizarrely with a strong cockney accent. I was finding everything very funny and was constantly making jokes, although in hindsight what was happening to me was not funny at all.

TTP is such a rare condition that it is almost unbelievable to think that I have it. But it happened. I am lucky that the haematologist at Colchester General Hospital knew about this rare condition; if he hadn’t reacted so quickly and got me transferred to the specialist centre, I might not be alive today.

I was in Critical Care for a few days, then later was given my own private room with a beautiful view over London. My treatment involved plasma exchange, which is a true miracle machine. For hours at a time I was hooked up through needles in my neck while my plasma was taken out of my body and replaced with other people’s plasma. I went through this process again and again, until my platelet count returned to normal. I was at the hospital for two weeks. It’s almost like a top hotel, and all the staff are so caring, kind and friendly. My consultant, Dr Marie Scully, and all the staff know you by name. Despite the circumstances of my stay, it is a lovely place to be. You feel as if you are the only person who is ill.

This whole experience has been very traumatic for me and my family. My mum, who is 70 years old, could not get her head around what was happening, which was made worse by the fact it was hard for her to visit me when I was at the hospital in London. My daughter, who is 13 years old, was on holiday in Florida with her father when I became ill. My mum had to wait for my daughter’s plane to land before calling her to tell her I was unconscious in Critical Care.

After what happened my daughter didn’t want to leave me or let me go anywhere. She was scared that something would happen again. That’s the awful thing about it – they can’t say whether or not I will have a relapse.

I was recently at a patient event and met one of the transfusion laboratory staff, and when I told him my name he said: “I know your blood!” He hadn’t met me but he knew my story!

The TTP Network is a patient group set up by patients to support patients and their families. As TTP is so rare, it is great to meet other patients who have been through something similar to you – you form a strong bond straight away. The more people who know about this condition the better. Nobody I knew had heard of this before it happened to me. As patients, we want to know why we got TTP and if we will have a relapse. I attended a recent TTP patient day in London, and it was so lovely to see a lot of staff from the hospital there too; they had given up their free time for us, they really care. Many of us also took part in a sponsored walk for TTP Education & Research during UCLH’s 2016 London Bridgathon, which raises money and awareness for the condition. I met one of the transfusion laboratory staff from the hospital, and when I told him my name he said: “I know your blood!” He hadn’t met me before but he knew my story!

It’s difficult to come to terms with living through a near death experience. I had to take three months off work and it took time to recover physically. Many of the patients I’ve met have experienced side-effects after TTP, such as depression or extreme tiredness, but I haven’t experienced any. I live a perfectly normal life now. I have a very physical job as a childminder for very young children so I’m never sitting down. I suppose I have reacted relatively positively to what happened. I know I’m one of the lucky ones to have survived this. I am a much happier person than I was before this happened. I just feel so grateful to be alive. I believe more than ever that you should live for the now.

We have seen people come in with TTP and die very young, very quickly.

Dr Marie Scully, University College London Hospital

Thrombotic thrombocytopenic purpura (TTP) is an ultra-rare, life threatening blood disorder that can present at any time in life, usually affecting women aged 30–40. This autoimmune condition causes blood clots to form in small vessels throughout the body and can cause organ damage, e.g. in the brain, heart or kidneys.

TTP can occur very suddenly and people affected often turn up at the accident and emergency department, and 10% of them presenting in a coma. We have seen people come in with TTP and die very young, very quickly. Once you’ve seen that, you don’t forget.

A delay in diagnosis can have a massive impact on a patient’s risk of dying. Once TTP is identified the patient is given plasma exchange with Octapharma's solvent/detergent treated plasma, which acts like a cleansing process removing their plasma and antibodies and replacing it. Plasma exchange is carried out until their platelet count goes up; that’s when you see a prompt clinical improvement. Before plasma exchange was introduced, there was a 90% mortality rate. Today there is a 90% survival rate. Our priority is to get our patients to survive the acute stage.

Patients often face chronic issues resulting from a frightening near-death experience. They can become anxious and fall into a black hole, resulting in clinical depression. There is a high chance – 30–50% – that a patient will relapse. These people have young families, jobs and partners. Their lives have been seriously disrupted and they live with the fear that it will happen again. TTP is a complete game changer.

University College London Hospital is a centre of excellence for the management of TTP and our objectives are to get quicker diagnosis for patients, improve treatment, and enhance life after TTP, for example by finding ways to predict who will relapse.

With TTP things can go wrong very quickly. We act fast and treat patients as we would want to be treated. We all live by that philosophy. We wouldn’t be human otherwise.