HOW IT ALL STARTED...
Inés has kindly shared her testimony with us about how she lived her experience firsthand. In addition, she has written a letter of thanks to her donor, which she has also shared.
"Already Friday... it's amazing how the weeks pass by. At the moment I'm sometimes swamped sometimes angry, depending on the circumstances in which I find myself. Today I've fallen out with my companion (since 2007), that has made me angry so many times; it was inseparable from my hospital table...my calendar. From the first time I was in hospital the existence of a calendar on my desk has been imperative, and like a prisoner counting the days until their release I was only counting down the days. Curiously I didn't mark the calendar at the end of each day, instead I crossed a day off when I opened my eyes each morning. I suppose that subconsciously I was desperately seeking the security in having reached another day. In addition to being full of crosses my calendar also had all kinds of anecdotes. Later on, my psychiatrist recommended that it wasn't a good idea to have the calendar so close because it could cause anxiety. It is very hard to close your eyes and go to sleep without knowing what each new day has in store for you, especially as events unfold and it becomes a possibility that it won't be anything good.
I was in an isolated ward within a few hours of discovering my diagnosis on the 20th March 2007. I received my first cycle of chemo between the 21st and 28th, but on the 30th I started with a fever and it stayed until the 10th of April. The same happened between the 13th and 19th until the doctors found an infection in the catheter. I was administered antibiotics with the help of a new central line. The result of the first puncture after treatment was not very encouraging. A complete remission had not been achieved and so a second cycle was needed. The idea of going home for a week was quashed. I would have to be in the hospital at least another month as the chemo was administered between the 20th and the 27th. Again the results were negative. I was not compatible with my siblings and the REDMO had not found a donor...total and absolute uncertainty. It led to a desperate option which would involve combining my stem cells with an umbilical cord but there were no guarantees about anything. Thankfully the doctors came one day to tell me that a compatible donor had been found. I took a deep breath, gave thanks and was filled with hope. May passed a little better with only a week of fever. After 63 days in isolation, I was finally able to leave the hospital although on the 28th of May I went back to receive my third cycle of chemotherapy (consolidation) that lasted until the 3rd of June. On the 30th I finally went out into the street, and I had the whole month of July to rest and recuperate in preparation for my transplant.
Salamanca, bad news: it was discovered that the bag which contained the umbilical cord blood for my tranfusion was not secure and therefore had to be discarded. I could not believe my luck, it seemed clear that my destiny was not to live. However, the doctor explained that there was another umbilical cord available, with less quality in the cells but more compatible that the previous option. On the 8th of August I began the fourth stage of chemo, the most brutal and called the conditioning stage. This treatment is seen as an end as it literally wipes out the bone marrow to leave it ready for the transplant. I will always remember the Thymoglobulin and its side effects (it is so strong as it attempts to prevent GVHD). This drug was administered through the skin which meant that I had to take a shower every three hours for three consecutive to get rid of it. At that time, an effort to simply get out of bed was titanic. I reached the day of the transplant, the 16th, in that condition, ready, but at the limit of my physical and psychological capabilities.
I can't tell you much about the transplant, apart from the fact that it wasnt very traumatic. In my case (and this is exceptional) they carried out the surgery under a general anaesthetic; injecting the stem cells directly into my iliac crests. The time around the aplasia was hard and long but it was the end. If it all went well then it meant that I would be able to go home. However, I would have to be conscious of the fact that in the first year there were many complications that could occur, normally related to GVHD.
On the 12th of September I was allowed to go home; after four cycles of chemotherapy, 27 platelet transfusions, 21 blood transfusions, controlled diet, and severe side effects, some predictable and others not. Everything was going well, and I was just about to arrive to the point which would mark the hundredth day when I suffered a big scare, but at the same time a miracle. Well perhaps it is better to say miracles. Firstly, because I am here to tell you about it and, secondly, because it was found during a hospital revision when I began to turn following a spinal tap. I started to feel really unwell, with unspecific symptoms but everything signaled that all was not good: I couldn't breathe; I felt faint; I was incredibly thirsty, confused and finally in a semiconscious state. Due to a bacterial infection, (pseudomonas) in the catheter, I was in a critical condition only a few hours later. A septic shock had been induced that led to multiple organ failure.
Despite the fact that I was so weak, and I lost lucidity at times, I remember perfectly the six doctors (haematologists, intensive care, surgeons, digestive system experts), the nurse and the auxiliary that were around my bed deciding what to do. It was in that very room that Teresa Caballero and Ignacio de la Fuente, backed by the whole medical team, saved my life. Nine heroes worked at a frenetic pace to stabilize my vitals. A shot of dopamine was given to my heart, which was now beating very weakly, a tachycardia was seconds away. I asked all sorts of questions to the doctors and despite being on medication, I remember all their answers. I couldn't breathe and despite the ventilator I was chocking, the liquid on my lungs provoked an indescribable pain, the intestine became paralyzed and due to my deteriorating shortness of breath I was moved to intensive care. I stayed there three day (according to what they told me afterwards) drifting in and out of consciousness.
Inés, with some of the members of her medical team
I came out the other side in the face of a prognosis to the contrary. I went up to the isolated ward and 17 days later I was at home, without muscle, without strength and weighing only 46 kilos... but HAPPY!!
My plans? To live with the best possible quality of life and to return to my studies. I want to enjoy each moment as much as I can, I want to show my love to those around me, to smile lots and cry a little.
This is my personal story. Despite everything I came out the other end, but there are so many, too many, that don't make it. I realize that the luck that was initially against me, in the end was what helped me. That are many people (some children and even babies) who have suffered infinitely more than I have, and to whom the disease has been mercilessly cruel. So I don't mind telling my story, a thousand times if necessary. I hope that our testimonies, can continue to prick the conscience of people to encourage more donors in whatever form and in whatever quantity. I know however that it is a difficult task because unfortunately, it is hard to be truly involved in the fight until it affects a loved one. Warm regards to everyone and keep going!"
Letter from Inés to her donor
"I wish you could have seen me... seen my face and that of my mother when the doctors came into my room wearing a smile; a smile that I had not seen on their faces in my whole time in the hospital. There was a donor of an umbilical cord. After such a long uncertain period, in which we found out that none of my three siblings were compatible, and the search for a donor by the REDMO had proved rather fruitless at last, here was a bit of good news. The best news possible, the most sought after news, the news that meant I had a second opportunity at life.
The doctors began to talk, I saw their faces and I heard them but I wasnt able to listen. Strangely I had frozen on the first phrase and my brain stopped registering the information they were giving me. I remember odd words; allogeneic transplant; GVHD, histocompatibility; Clinic Hospital in Salamanca.... I had to ask them to repeat everything. They looked very happy. If a donor hadnt have been found then my chances were almost nil, as an autologous transplant would have almost definitely resulted in remission. When they closed the bedroom door a few minutes passed then I started to take chargeof the situation. My mother was euphoric, and my first reaction was to call everyone and tell them the news in my favour. I would have loved you to have seen it and above all for you to have shared in this moment so that you could fully grasp the meaning of you altruistic act. That your solidarity had served something, well someone. Someone who will always be so grateful!
I cannot do it personally due to the confidentiality protocols but I want you to know that it would be one of my greatest desires to meet you in this second opportunity of life that you and your child have given me, without knowing who I am. I want you to know that the day you gave birth, you gave birth twice. You are my second mother, and you baby is now my blood brother or sister. I wish you could have seen the explosion of joy, of smiles, of hugs, and of happiness that occurred within those four walls the day they told me. I am not sure that you would have been able to stand the blinding light that filled the room; it was a light of hope. You gave birth also to so many dreams, and hopes and projects. Some had been put on hold the day of the diagnosis and others arose since then. I will never know how to say thank you enough for the life you have given me. It seems that you have solved a tongue twister really and I couldn't have asked more from a human being.
Life, is what I hope I take forward with me. I owe it all to you, for in your happiest moment you thought to act in such a generous and humane way. If you were in front of me now I don't know what I would say. I guess I would probably be speechless, but I am convinced that you would be able to see all my emotion in my eyes. My eyes would be full of gratitude for a stranger to whom I am joined forever more, by the umbilical cord that will never break the bond. Thank you for everything, and I hope that you have the chance to read these words one day. I hope that at least you have been told that the umbilical cord that you selflessly donated has been used and that your decision saved a life...mine.
Thank you once again, I wish you all the best and above all your health. I am convinced that if we have our health then all the rest of our problems can be solved, it is just a matter of time. Time that, sadly, other people who didn't receive the same luck as me, haven't had. Warmest regards and I hope that life treats you well."
Help people like Inés by becoming a member of the cure for leukaemia and haematological malignacies, HERE. You will help us to continue our research so that one day these diseases will be 100% curable. With only a little you can do so much. Thank you!
Find out more about bone marrow donation, HERE