Community AA Voices - personal stories Hanna's story Hello, I'm Hanna. I have been living with aplastic anaemia, since I was 17 years young - I'm now 53. How it all began In 1981 I was a normal teenager - at college full time, playing netball 3 times a week and working in a restaurant, with my whole life ahead of me. I went to my GP for a routine check-up. Whilst I was there, I mentioned that I had bruising appearing on my legs and I was sure I hadn't knocked myself. I also found it hard to get around the netball court as fast as I used to!! Letting a ball go out of play was not my style! The GP said I was doing too much and maybe I should cut back a little, but if the bruising persisted - come back and have a blood test. After another month I went back to the GP. At this point I had dizziness every time I bent down, the odd nose bleed, and more bruises. He took one look at me and sent me to Croydon Hospital for blood tests. It was 10 days before Christmas and I was told to expect the results after Christmas! 2 days passed. I was living with my mother above a shop in Coulsdon, Surrey, which was next door to the GP’s. When I returned that day I found my GP waiting for me, insisting I go to the hospital immediately for further tests, as at this stage they were not sure if it was leukaemia or aplastic anaemia. I thought I hope it is Aplastic Anaemia, because all I would need is some iron tablets and all would be sorted. How wrong was I?! The diagnosis At the hospital the doctors took more bloods and took a bone marrow biopsy from my sternum. The results came back confirming the diagnosis - I have aplastic anaemia. I was transferred to the Hammersmith hospital, as the consultant there specialised in my illness. I have to say, at that point I still didn't realise how ill I was, and death didn't even enter my mind. My boyfriend fell apart and my parents who had not been in the same room for years were both there. When I arrived at the Hammersmith hospital by ambulance I was taken to a sterile room. Prof Ted Gordon-Smith explained that aplastic anaemia was a serious illness and my bone marrow had stopped working. My Hbc counts were 4 and my platelets were 15. Bone marrow transplant was being explored as an option. In the meantime I started treatment with ATG, which was derived from a horse (this is a little different from iron tablets, I thought)! The ATG would be administered first, followed by ciclosporin and steroids. I was told about the side effects - stiffening of the joints, headaches, some nausea… All the time I was in hospital I was supported by blood and platelet transfusions. After nearly a month in hospital, and with virtually no side effects, I was allowed home. My blood counts where good and seemed to still be climbing. When home I found it a little more scary being on my own and being responsible for myself. I was also embarrassed as my face was becoming rounder and rounder from the steroids and I was told to wear a mask to prevent catching any infections. More treatment After 2 years I started to feel tired again. The last few blood tests showed that my counts were dropping. I had another bone marrow biopsy and the results showed that I needed more treatment. I was now at St Georges Hospital under the supervision of Prof Ted. As my sister turned out not to me a match for a bone marrow transplant, it was decided that rabbit ATG would be tried. Yet again I was having blood and platelet transfusions. I started the rabbit ATG but unlike the last time, on day 3, I woke up not being able to move my limbs. My joints felt like they had all fused together. This was a side effect and not a very nice one. I needed help with everything and I mean EVERYTHING. I was given a heavy dose of steroids, but they needed time to work. Thankfully, this stay in hospital was quick – around 2 1/2 weeks and then I was out. 6 weeks after treatment I was back at work full time. The doctors advised that having children would be quite dangerous. We decided that adoption would be the way forward. I was also planning my wedding to my childhood sweetheart. We had a fantastic wedding and a lovely honeymoon (with no live vaccinations). On my return it was back to normal life - work, playing netball and running a house. Enters PNH I was now 24 and continued to have 3 monthly hospital check-ups. One of these check-ups showed that my haemoglobin count had started to fall. It transpired I had developed another condition, called PNH, which can happen with patients that have had aplastic anaemia. My ciclosporin dose was increased to help support the marrow, this did the trick but I did need to have blood transfusions periodically to bring my count up to a normal level. My PNH never really gave me any problems – I could still function and do all I wanted to do. Our family grows In 1997 we adopted our first little girl. She was 1 when we brought her home. It was a wonderful time - life was good, with lots of fun and family time. In 2001 we adopted another little girl. Life became very busy, but my blood counts were holding up and I didn't give my illnesses any priority in my daily life. However, during a routine check-up I was told that I had Hepatitis C. I was told that the blood transfusions that had been keeping me going over the years in the 1980s had been brought in from the USA and that’s how I had been infected. I was now back at work part-time, running a home, throwing myself into PTA meetings at the girls’ school, holidaying with the family and my girlfriends. I was transfusion free. PNH returns Then in June 2009 everything changed. I was very tired - finding it hard to walk up the stairs, in fact, finding it hard to do anything. My daughters were now at senior school, so a little more independent. I was booked to go on a girls’ trip to Ibiza for 4 days. Whilst in Ibiza I spent a lot to off time sleeping in the shade, I couldn't eat properly, I was out of breath too. When I came back, I went to the Haematology Day Unit and found out that my temperature and the blood counts were not normal. I was admitted, as they wanted to do more tests to find the problem. I was told, that my PNH clone had got as big as it could, and that I had multiple clots in both my liver and lungs, hence me feeling tired. I was put on Eculizumab on my birthday and had to stay in hospital. I now had 2 weekly transfusions by a team of lovely nurses that administered the drug intravenous in my home. Eculizumab is not a cure for the PNH - it prevents clotting. Six weeks after starting the treatment I was getting headaches. My PNH nurse told me that sometimes this is a side effect of the treatment. However, I started to feel worse, phoned the hospital who told me to get to my local A & E. Scans showed that I’d had a bleed in the head. I was transferred from my local hospital to King’s, where they spent 24 hrs reversing the anti-coagulant drugs so they could operate to drain the bleed from my head. This was a scary time for our entire family. Light at the end of a very long tunnel In 2017, I finally got rid of my Hep C with a wonder drug called Epcusa. I had very few side effects, the main one being my arthritis which got worse. But I can live with this as it would not kill me. It is amazing that it has finally gone. I’m not allowed to drink and I have to have regular check-ups, but here’s hoping a cure will be on its way for cirrhosis. As you can see from my story, I have had more than my fair share of illness, but I have never felt bitter. I have questioned - why me at times, cried and been frustrated, but I feel lucky that all the treatments I have had, have worked. My family, in particular, my husband and my girls have always been there for me and I have always had their support and love. In fact I think it’s harder on family members sometimes as they feel so helpless. I have had a happy life with lots of holidays and experiences; I have never let my illness rule me and have just included it as being a part of me. Some may say I'm strong, but that’s just me. I know I’m a survivor and I’m very pleased as I still have places I want to see and see my girls getting married.