Paciente Vanessa 1

I am Vanessa. I am from Granada, I am 33 years old and I am a normal woman with a normal life. An everyday life in which you never think of being sick, but I was sick. I got married 5 years ago and only a short time later my little Daniela arrived. It was such an exciting time! I was in a really lovely period of my life, when I was diagnosed with leukaemia.

The first time I went to A&E it was because some bruises had appeared on my knuckles and spread rapidly across the back of my hand, even though I had fallen or anything. The doctor told me that it was from a knock I had received without realizing.

The following day the bruises became even larger and they even appeared on the other hand. After several visits to the emergency room at the hospital, I was referred to a cardiovascular specialist three weeks later. However, my condition worsened and I decided that I couldn't wait any longer, the bruises had begun to appear worse and they went up to my elbows. I went to see a doctor that was a friend of my sisters and at the first glance she gave me her opinion. No sooner had I rolled up my sleeve than she had told me to go back to the hospital, but that I shouldn't leave until I had seen a haematologist. I ran home to pick up the results of my previous analysis, and in the entrance I glanced round a final time as it felt like my world was caving in. My house...I hoped to continue enjoying it.

That same afternoon, I was attended to by the director of haematology who told me all the possibilities that my condition could be: acquired haemophilia, von willebrand syndrome, leukaemia or lupus. I had to wait four days more until they gave me a definitive diagnosis, during which time my anxiety rose to unprecedented levels. On Monday the 15th of October 2007 I was finally diagnosed with acquired haemophilia. They explained that as a result of the pregnancy, I had developed an antibody or inhibitor that destroyed the factor VIII in my blood, which provoked spontaneous hemorrhages that were difficult to control. "Spontaneous and difficult to control? Gosh, am I going to die?" That was the first thought that entered my mind. "Well at least there was treatment" I thought immediately after. It was one of those rare diseases that not even the medical team that were treating me had seen before. It only affected one in a million people every year, what luck I had!

That paralyzed me... that is the best word I can use to describe what was happening to me. It paralyzed my life, my hopes for the future and my life with my husband, who also had to give up work in order to care of me and our daughter. It paralyzed my social life and my feelings. I was life a sort of zombie. I had to take several corticosteriods for two months, they caused so much damage that I really began to feel sick. They didn't work. The doctors began to explain all of the possibilities for my treatment, in the order in which they would be applied and my head began to hurt from all the questions, doubts and above all fears. A terrible fear overcame me, a fear which didn't relent at any point in the day, and a fear which didn't let me think, or dream things. I could relax at any moment whether it was day or night, for the fear that any slight thing could cause a hemorrhage. To climb stairs, hold my baby in my arms, cook, drive, and walk in the street, all of these things suddenly became dangerous. What's more they recommended that I didn't stray more than 20 minutes drive away from the hospital at any time; I was basically locked up at home all the time, with a horrible psychosis.

As the months passed, I changed the hospital and I was told of a haematologist that had seen various cases like mine and who could help me a lot. It was immensely lucky to find her and to have her so close to my house, especially as my husband was talking about selling the house and travelling to whichever corner of the world was necessary to find the doctor and the treatment to cure me. Every week we had a consultation (I was treated excellently), and each week my husband and I would wait for the analysis results with anxiety that they were improving. The months went by as did the treatments, and the levels of the disease and I felt as though I was in a dangerous rollercoaster, until I arrived at the severe acquired haemophilia. A 1% factor VIII in the blood, my gosh what a scare, although I managed to laugh. The last possible treatment was cyclophosphamide, a medication used in chemotherapy and in addition to all the side effects that it could cause (nausea, vomiting, hairloss, etc) the real danger was that it could bring on leukaemia. And that was to cure me! In the end, that is what I had to do. My sister asked my haematologist whether my life was sufficiently in danger to risk using this treatment. The answer was yes. There was also the possibility that with time, the inhibitor would disappear itself, although her demeanor didn't suggest that this would happen. They gave me a month to consider the options. And that is where I arrived at a moment of change for me.

That night some friends came to dinner at my house, and we spent the evening talking, listening to music and having a good time. Although my worries were there, I forgot my fears and my anxieties for a few short hours. I laughed and chatted and I felt ok. When everyone had gone, I hugged my husband on the sofa and a light turned on inside me. Not only had I decided to undergo the treatment I had also decided to live. I realized the precious time that I was wasting due to my attitude and that I should be dedicating it to my family and my friends, and that I should learn to live with the disease. I wasn't possible to know when I was going to die but I was determined to live as intensely as possible in the time I had. From that moment I changed my way of approaching this whole situation, I changed completely. I tried to live as if I wasn't ill, without excesses of course, but as normally as everyone else. I thought that until they applied the chemo I had some wonderful time to enjoy first and also time to prepare myself well. Maybe I wasn't so bad, I tried to live the period of the treatment thinking that I would be ok, and as calmly as possible. If the worse happened and I developed leukaemia, then I was determined that I would face that too, with the same strength that had been born within me. What's more there were so many examples of people who had won the battle, why couldn't I?

I began to feel much better and when the day of the consultation arrived, having decided to start the treatment immediately, we were surprised when the analysis results showed that my situation had started to improve. The haematologist decided to postpone the chemo, preferring instead to wait for further results, and during those weeks the factor continued to grow, and grow, and grow, without any treatment. Time went by with ups and downs, sometimes the factor went down but never too drastically and finally I began to get better until the problem finally disappeared. In November 2010, I was given the definitive all clear.

I am completely convinced that my attitude was decisive in the improvement, I don't know how I did it but, I understood that I had been denying myself the opportunity to get better. I now have a clothes shop which I opened when I was still ill because I was determined to do it and it was a job that allowed me to go to my consultations every time I needed to. I hope that I stay healthy from now on, so I can see my four year old daughter grow and discover the world with her. I would like to travel and see the moon from a hidden island in the Pacific or Indian Ocean, and to think how far I am from home. I would like to see Coldplay in concert because I love them! On top of singing "Viva la vida" when I needed to hear it, I dreamt about seeing them live when I was ill.  I also want my business to grow and be successful if it's possible. Above all, my main plan for the future is to LIVE the life that God has given me. I want to enjoy being with my loved ones and thinking about the luck that I have to be able to live with them.

Finally, I state that I will never forget the fact that there are people still suffering. I had the intention to become a bone marrow donor but unfortunately I found out today that it isn't possible. However, you can!! If you opened your eyes to the reality faced by people with these diseases, you would feel the pain that they are going through in your hearts. For those suffering from leukaemia the fight is difficult. I lived with them during my consultation, in the rooms where our treatments where applied, and in the hospital when I was interned. They laugh, they cry, they talk of trivial things and of important worries, but above all they fight. However, sometimes these patients cannot fight alone; they need a bone marrow donor to help them. No one is free from the suffering and a small gesture from us could save the life of a leukaemia patient. A there anything more important in the world?

Webpage updated 11/29/2023 15:36:05