Content note: Joanne has had a particularly difficult treatment journey with some rare side effects. If you have been newly diagnosed with aplastic anaemia, you may find her account difficult to read. Everyone's journey is very different, and you can read many positive stories here

I've been meaning to do this for ages but today I finally wrote down the story of what's happened to me since the start of my aplastic anaemia journey. I haven't mentioned everything, because so much has been happening since 2018 but it's most of it.

I first heard the words aplastic anaemia in February 2018. I didn't fully know what they meant but I was a week away from starting a new job and I was disappointed at another setback. I'd been working for three years or so in a job that I hated and was keen to leave but had struggled to find another job, so this felt like really bad timing.

Things were quiet at first. I had to wait for my counts to drop so I could be diagnosed. I started taking Ciclosporin in November 2018 and I was doing ok for a while. My blood counts were low but stable. I got to March, and the nausea and stomach troubles started. I had to take a few weeks off work because I was so nauseous that I couldn't think straight. I also had pains in my hands and had to wear gloves all the time.

Then, on 27 March 2019, the worst happened. My husband David lost his lovely mum to cancer. We decided to go to one of her favourite places to scatter her ashes, and we had to walk up this massive hill. I really struggled and needed David and his Dad to pull me up as I had no strength in my body. At the time, I thought I was really unfit but looking back, of course, the aplastic anaemia was kicking in and my red blood cells were low.

For me, many of the medications' side effects are really severe

I went back to work, after an adjustment in medication and managed a few more weeks. Then I started to feel really bad again. I had constant stomach ache and nausea. Food became a struggle. Then one day, I started throwing up and every time I took ciclosporin I had these nasty pains. I came off the medication because I was so sick.

The doctors decided to keep me off my medication until they worked out what was causing my stomach issues.  In the meantime, my counts continued to drop and I needed my first blood transfusion in August 2019. I then had a period which was very severe and caused me to be admitted to hospital for a short time. My consultant came to see me and told me that the aplastic anaemia was now severe and they asked for permission to contact my brother to see if he would be a match for bone marrow transplant.

They tried me on another drug called Tacrolimus which is another immune suppressant. My doctors decided that they wanted me to try ATG which involved a three week stay in hospital and involved farming antibodies from horses. I was reluctant to try this at first, because I'm vegan, but I was assured that no horses were harmed and it was the best thing for my health.

I had the ATG over Christmas 2019, I reacted well and was allowed to go out on a few days over the holidays including on Christmas day which was wonderful.  I had a nice afternoon, then came back in for a blood transfusion.

Over the next 6 months, I was in the hospital for various treatments including anti fungal IV and transfusions. Then one day, the doctors sat me down and told me that the ATG had failed. They mentioned transplant again but I was adamant that I didn't want this.

They had to stop the Tacrolimus because I developed an AKI (acute kidney injury) and my counts weren't increasing.

Parts of this are hazy because it happened over three years so I may have got the order wrong but I think they tried me on steroids next. They just seemed to cause massive swelling in my legs and feet. My mum bought me slippers because I couldn't put my trainers on any more!

I remember going to day unit one day and saying I felt poorly but couldn't explain why. A doctor came to see me and couldn't find anything. The next day, I was in bed at my parent's because I was too weak to sit up. I got a call from my CNS and they asked to admit me. She could tell I was poorly as I didn't argue. So I had another week in hospital with IV fluids & various treatments.

The next treatment they tried was Eltrombopag, but that didn't do much apart from turn me yellow!

I just plodded along and never felt like I was a sick person but nevertheless my body got weaker and weaker. David had to stop working to become my carer as he was terrified of leaving me alone.

My transplant day went very badly

I had an initial meeting with the transplant team in March 2021 but I was really resistant to the idea. I finally agreed to transplant in July 2021 because we had run out of treatment options and I was unable to wash, dress, get ready for hospital or walk onto the ward without being pushed in a chair.

I was admitted on 24 June 2021, and the conditioning went very well. I wasn't happy at being in hospital but I coped. I got lots of messages and cards, plus David was on the other end of the phone every day. We did lots of video calls.

Then transplant day came and I managed to get myself washed, dressed and glammed up a bit for the transplant. I even got myself a Costa latte as it was nearly my Birthday.



The transplant began and all was well until the last 10 minutes. Suddenly things turned bad very quickly.

My head was agony; the worst pain ever, and my blood pressure shot up. I kept asking for pain relief but would throw up almost straightaway.

Its all a haze but I remember bits and pieces. I remember saying that being sick gave me relief.  I remember that they kept taking my blood pressure and examining me but I just wanted to be left alone.

I remember them trying to take my blood pressure as it was so high, with me asking why, in the middle of sobs.

I remember having to have an ECG and begging them not to do so.

I remembered seeing one doctor then another and getting really angry at being examined twice.

I remember the kindness & patience of the nurses. I think that will stay with me for a long time.

I was in so much pain and distress that it felt like I was being tortured.

All of a sudden, it stopped. The medical team gave me platelets and I fell asleep.

I woke up with my alarm beeping.

I felt groggy and confused but ok. I had to ask the nurses for help with getting back into pyjamas because my brain was fried. Later I was taken for a CT scan which I thought was over the top but I'm glad they did it! A neurology doctor came to see  me to explain that I'd had a bleed on the brain and they thought I had a blood clot. I couldn't really understand what she was saying because my brain was fried but I remembered her saying "This is serious, Joanne."

The next day, a familiar doctor was on call - it was a relief to see someone I knew. She said she was really sad to find out what had happened to me. I'm always hard on myself so thought I'd been a bit soft and she said "definitely not!" It turns out that a subarachnoid hemorrhage is a type of stroke and it's the most painful headache you can have. 

So now I'm a stroke survivor too.

In the days that followed, I kept getting the nasty headaches. I was told this would happen until the blood was reabsorbed into my body.

I finally was discharged on 16 July and was delighted to have my birthday at home. 

Continuing my recovery

I still struggle with horrible headaches. Sometimes it's like knives being driven through my skull, sometimes its like waves crashing against the rocks, leaving me unable to do anything but wait for the storm to finish. Often I'm entirely unable to control the noises that come out of me, although I try. I don't want to be that person. I'm now afraid to sleep because it creeps in then & wakes me up.

The good news is that I have strong painkillers. I just say to David, "It's here" and he goes to get the meds for me.

I have had to be readmitted twice, one because of a bad headache so I could have a scan. The second time was because of high levels of a virus called CMV. I was fuming, because I felt well! I struggled mentally in there so they agreed to give me a PICC line and a pump so treatment could continue at home. That was an interesting time as the pump kept going off and we had to go back to Jimmy's on several occasions to rectify. The virus has kept coming back but I get tablets to treat it.

I've now been transfusion free since July 2021.

My morning pills now. They are getting smaller all the time.

I've recently started having the stomach ache again that plagued me the first time I was on Ciclosporin - but the medical team didn't want to give me Tacrolimus again due to the kidney injury.

The weaning process off Ciclosporin has started and the next thing will be venesection which is a way of getting my iron levels down. My CNS doesn't think my veins will take it so we're going to try once to see how I react. Every time I had red blood cells, I'd also get more iron in my body, and the levels are too high - which is a common issue for people being treated for aplastic anaemia. 

If the venesection doesn't work then the next two options are an injection in my stomach or tablets, both can effect my eyes and ears so I will need sight test and a hearing test.

This is a summary of some of the treatment and side effects I have been through since November 2018. I haven't included everything because there is a lot!

 

If you're reading this and you have aplastic anaemia, I would recommend you get help from The Aplastic Anaemia Trust. I have joined their online groups regularly and spoken to members of the team about my experience.