Content note: In this piece, Viv talks about some adverse reactions she had to her treatment. If you have been told you will have ATG treatment and are wondering what it will be like - you should bear in mind that everyone's journey is different, and you can read about many stories from people who had a more straightforward reaction to ATG treatment here. 

Diagnosis

I thought I was well and had to go into Hospital for a planned hysterectomy in June 2019.  I was quite anxious about the anaesthetic and had a fear of not coming round.  My recovery went well and I had 8 weeks off work, when I returned all seemed well. I work in the community and during September I found when I was going to a meeting in town. I was struggling to walk up steps and a slight hill.  I put this down to recovery post op. 

After a routine visit to my GP I told my Doctor I was tired. My blood pressure was raised and she suggested I try to keep fit. I tried to take reasonably short walks but found I had to stop and sit down. After returning to my GP she sent me for a blood test, not happy with the results she sent me for more. I was then referred to the haematology team.  I had another blood test and a bone marrow extraction.  That hurt!  It was then that I got the diagnosis of Aplastic Anaemia.  I often wonder if the stress of my operation was the cause but that is something I will never know.

Finding out about treatment 

I remember my consultant meeting so clearly.  My son attended the appointment with me, and the consultant said, "Do you want the good news, or the bad news?"  

 The good news was that it wasn’t cancer.  I remember thinking: "At least its not cancer, but what is aplastic anaemia?" I was told what was happening with my bone marrow and that I would need treatment in London.

There was no explanation of the cause. It didn’t really sink in as I was so shocked.  I wondered what I had done to deserve this?  I was given leaflets, a card as I was neutropenic, an emergency sepsis card and said I would be given an appointment to attend St Bartholomews Hospital in London – 50 miles from where I lived.

I was listening to words I did not understand. I was then sent to another department for x rays and blood tests.  That was when I cried.  Having never had a major illness in my life I was suddenly really scared. My son gave me a cuddle and said things would be ok, but I kept on crying – I don’t normally do tears.

One of my best friends advised that I did not Google AA as it would scare me.  My appointment with Barts arrived for an initial consultation and was given a date a week later to go into hospital for Horse ATG treatment.  I could not get my head round the fact that a Horse would be helping me.

ATG Treatment

My AA journey was starting.  I was taken to my room with two beds and its own bathroom. My room mate was a younger woman with leukaemia. We became good friends. 

I was told I would need a PICC line, "what was that?"  I watched as a line was inserted in my arm and across my chest to near my heart.  I was in a panic as I thought they may cause some damage. It never occurs to you that they know what they are doing. 

My ATG treatment started and I had an initial allergic reaction to the test patch.  As I had had that reaction they decided to give me the ATG over 4 days.  Within a couple of days I got a rash. The next day I was covered from head to foot in this purple rash. I had no normal flesh colour left. I had what is called severe serum sickness.  That was scary.  My temperature was spiking and I had chest pains, my stomach was agony and I was sent for several tests. I thought I was going to die. I just slept, hoping to feel better. After a few days the rash settled and started to subside with the help of some steroids. 

Going Home

All was going well and after nearly 3 weeks I was allowed to go home.  Suddenly my support network was gone and I was scared once again.

I had very little energy on arriving home and had a large bagful of medication to take.  I lost a lot of weight. I struggled to shower, a walk up the stairs meant a stop half way up, bending down was impossible as it was a struggle to get up again.  I could not walk far as I got out of breath. Then there was the paranoia of germs and I was forever cleaning, washing my hands and researching what I could and could not eat.  I was scared to stroke my cats in case I caught something.  I was suddenly aware that people around me could give me a nasty virus or infection. And if anyone wanted to visit, including family I had to be careful. I became almost reclusive. My hair started to thin and I dreaded brushing it.  Life had changed so much.  

I very slowly started to improve.  I went for blood tests, had blood transfusions, platelets transfusions at least 3 times a week which slowly went to twice a week.  I had to return for an overnight stay as my blood levels dropped and I was very lightheaded.  I then had regular weekly blood tests, had to travel to St Barts every month and was monitored.  By Christmas I was put on Ciclosporin, a rejection preventative and then worried that I had to drink 2 litres of water to keep my kidneys healthy. My water bottle went everywhere with me.

Slowly the improvement continued and along came Covid.  This was a time when I was very fearful of the virus and what would happen if I caught it.  My employer discussed about having a phased return to work. Thankfully I could work at home as I was considered Clinically Extremely Vulnerable. My team manager, was quite unkind and insisted that I was tired and that if I could not return to work within a year I would lose my job – I really did not need to hear that. My friend told him that my illness was serious. My complaint about him fell on deaf ears. It was assumed that because I was anaemic I could eat iron rich foods.

Looking foward

Fast forward to January 2023 and I have blood tests every six/eight weeks. They are stable. I have Haematology appointments every 3 months and I am more hopeful for the future.  I still get very anxious when I get my blood test results and dread that it may return and I am still very careful when I go out and my mask is my best friend. It goes everywhere with me.   

The problem is AA is so rare not many people have heard about it or understand it.  I was lucky I have two very supportive friends who were not scared to google my illness and are so understanding and my two sons, their wives and my partner have been great.  “

Thanks

I would like to thank all the Haematology/Oncology team at Colchester General and Barts Hospitals. The specialist nurses for putting up with my endless questions.  My patience of the nurses in Colchester Collingwood Centre when I nagged them to send my results to me each time I had a blood test. Most of all to my GP who was a locum. If it hadn’t have been for her diligence I may not be here today.

 

 -Viv