When 25-year-old Anie was told she’d need a stem cell transplant to treat her aplastic anaemia aged 17, she thought finding a matching donor would be easy. But her Asian ethnicity made it much harder to find a match. Anie spoke to Clare from our Patient Services team about her experience of having a haploidentical transplant from her dad.
Had you been feeling unwell before you were diagnosed with aplastic anaemia?
I was a busybody teenager. Always out and about seeing friends. When Sixth Form started back up in September 2012, I started getting awful headaches.
I’d sleep my headaches off and before I knew it, I was taking codeine every couple of hours and sleeping for up to 18 hours a day.
I was constantly exhausted and achy, but I put it down to the fact that I had spent so much time in bed for so long – silly really!
I managed to ignore the signs for so long because I was scared of needles, but thankfully my dad forced me to get a blood test. At 2am the following day, an on-call doctor came knocking on the door telling me that I needed to go to hospital.
I was terrified but also so relieved that there was finally an answer as to why I had been feeling so awful for so long. I obviously was unprepared for what that answer would mean and how it would change everything.
How did you feel when you were told you needed a stem cell transplant?
I was grateful that there was a solution to never-ending blood transfusions and uncertainty in my life. Maybe I would start feeling well again.
I had heard about other people having transplants and knew that they could literally save lives, but understood how gruelling and risky they could be. I was just desperate for a cure.
I was scared because I did not know what it would entail. Previous treatment had made me tired, sick, weak and had huge impacts on my mental health as well as making me so prone to infections. I was not looking forward to anymore pain or fatigue.
Based on my other friends’ stories having had stem cell transplants, I underestimated how difficult it would be to find a stem cell donor that could act as a match. I thought I would have a treatment plan sorted in no time.
Were you told that your ethnicity would make the search for a matching donor more difficult?
I remember being told that, but did not appreciate how difficult it would be. I sat waiting for the phone to ring. I got very excited and nervous every time a doctor would come and visit that this would be the precious news we had all been waiting for.
Those weeks of waiting turned to months, and I was getting weaker and weaker. I was catching more infections and losing more hope that there was anything out there that could end the endless nights in hospital and the desperation I was feeling.
I was so happy for the friends that had found matching donors and I think it really showed me that there was hope out there for everyone. However it was times like this when I had to look inwards and ask myself, why a match had not emerged for me.
How did you find the waiting aspect of the stem cell transplant? How did you get through this time?
I am an optimistic person, but after a few weeks and months, I started to lose all hope and was clutching at miracle stories online to help me think that there were other ways that I could feel better.
Honestly, I was losing my mind thinking too hard about the fact that the end of my whole life was staring at me in the face and I was being confronted with it every day until something materialised.
I was losing friends in the ward from other cancers and illnesses and it became more and more clear that what I was hoping for was no longer a game. It was reality and my hope alone was not going to be enough to get me through.
Friends were amazing and kept me going, alongside Anthony Nolan who gave me something to believe in.
I was involved in campaigns and was learning about all the valuable outreach work in mosques and areas with large BAME (black, Asian and minority ethnic) communities gave me some hope that I would find a match.
I thought of future stem cell recipients and hoped that they would not have to go through the agonising wait as me and the excruciating feelings of sitting by a phone for days at a time just praying for a match.
At Anthony Nolan, we are tackling the health inequality that exists for black, Asian and minority ethnic groups, who are more likely to struggle to find a matching stem cell donor. What can we do to improve this?
I think people need to understand how real the struggle is for someone in need of a transplant and that it can happen to anyone, regardless of race, religion, age or gender.
I think it is vital that people understand the process of donation and the lack of risk to donors.
I think that, honestly, people need to see patients first-hand that need transplants and explain their rationale behind not registering to be a steam cell donor.
Following there being no match on the register, what was your other option?
I had the option to have stem cells from my father in a haploidentical transplant (using stem cells from a family member whose tissue type or HLA is half matched to yours), which was extremely nerve-wracking as the success rate was significantly lower for a transplant from my dad than from an unrelated donor of a higher match.
What was it like having your dad as your stem cell donor?
It felt surreal having my donor as my dad. It was interesting to see the process he went through as a stem cell donor. It allowed me to see that he was not in any pain and the method of donating was easy and painless.
How was that experience for him?
He had no issues at all, he said the injections made him slightly flu-y for a day or two, but it soon went away and the donation process itself was very easy. The only difficult part was not having to go to the toilet for the duration of donating!
Do you have any advice for any other person or family who is about to go through a stem cell transplant?
I think the stem cell transplant itself feels so strange – the months and weeks prior feel extremely nerve-wracking because everything is so unknown and everyone has had different experiences. I think it is important not to read too much about other peoples’ experiences and not to compare yourself with anyone else – our bodies are so strange and amazing and weird and we all react differently.
You can lose weight, gain weight, be exhausted, have energy, crave strange foods, be sick, have diarrhoea, have weird dreams or do nothing of the sort.
The transplant is extremely daunting because you’re getting a new immune system and having something new put in your body, but it is a strangely surreal moment when it happens. I felt like it was a huge anti-climax when I sat on my hospital bed eating skittles as I watched the pink bag of stem cells stare back at me on the drip.
The transplant is super tiring so remember not to put too much pressure on yourself, sleep as much as you can, watch things in short bursts because your concentration may not be great, and just look after yourself in terms of mental wellbeing. Facetime people when you can and eat soft things and ice lollies to help with a fragile mouth!
How did you find the recovery process?
Recovery can be quite a challenge as you learn to get back to normal. Sometimes redefining normal is what helps. It takes time, but remember how incredible it is that your body is going through a huge change and it’s doing amazingly.
It is such a strange time preparing for the unknown, but know that it is not a new treatment or system and it has been done so many times. Just follow the doctor’s orders and be kind to yourself! It’s okay and perfectly normal to be nervous, anxious, excited, worried and scared all at once.
If you or someone you know is going through a stem cell transplant and would like more information and support, our Patient Services team are here to help. Head to anthonynolan.org/patients