Parents of children who have been through transplant know how amazingly strong they can be. And that resilience is something which continues afterwards, as Verity, mum to Albie who received his liver transplant in December 2021 https://childliverdisease.org/transplant-had-not-entered-my-mind/has discovered this year.
It’s fair to say that 2024 has been a bit of a challenge so far as Albie has been ill on and off for most of it and missed a lot of school. Before Christmas he had tonsillitis, and this was the first time he has needed antibiotics since his transplant. This proved to be very tricky as he is allergic to Tazocin, so the GP wanted to avoid all penicillin. The alternatives they normally prescribe, he couldn’t have with his immuno suppressant. They finally managed to find one he could have, but it’s not commonly stocked in the pharmacies, so having trawled around five pharmacies in the area, I managed to get hold of it!
It took Albie a long time to get over it and he was due blood tests as his kidney function hadn’t been good. On reflection I should have cancelled the blood tests until he was better but hindsight is a wonderful thing. In the event after six hours of waiting around, past 10pm and still not seen a doctor, we were discharged. I didn’t want him to miss out on his pantomime trip with school the following day, so although he was extremely tired, he went to the panto and then home to rest.
After Christmas, he still wasn’t right – he would miss at least one day of school a week. We had several trips back to the GP, but nothing underlying appeared to be wrong.
In February we were due our review and ultrasound appointment at Kings. A few days before the appointment I was asked by the CNS to bring a stool sample to the appointment. This had not been requested before and when I asked, they said it was to do with his EBV viraemia level as this could be indicative of something else, and they would talk to me at the appointment. Obviously, I was anxious about the unknown but did not anticipate what they were going to tell me. It turns out, they were worried about PTLD post-transplant lymphoma.
I don’t remember all they told me during the half an hour appointment with the very lovely professor and CNS, the only words I came away with were lymphoma and chemotherapy. I know they said we weren’t at that stage yet and that they would continue to monitor Albie, but they were being extra cautious and checking everything. He had no obvious swollen lymph nodes apart from the enlarged tonsils, so that was reassuring. But I came away extremely anxious. I was unsure how much Albie had taken on board, he said he wasn’t really listening, but had obviously seen me crying, again. Since then, Albie’s bloods have been slightly better and nothing else appears to be a concern, so regarding PTLD it’s reassuring.
Just before Easter, however, Albie developed a persistent cough. I took him to the doctors’ numerous times. They were reluctant to prescribe antibiotics both because his chest was clear and due to the difficulties last time. The cough got worse though and he started to be sick every time he coughed, so we went back to the doctors and I called the local hospital several times. Albie’s community nurse was really helpful at driving things forward. The cough lasted weeks. He was prescribed antibiotics, had sputum samples tested and because he couldn’t catch his breath due to the cough, he was referred for a whooping cough test which is what it turned out to be. Albie was vaccinated as a baby, but due to his very low immune system and the rise in whooping cough cases, he is obviously very susceptible unfortunately. He was given an inhaler to alleviate the cough and a chest X-ray which thankfully came back clear. It led to him missing almost a whole half term of school. He returned doing half days in the last week as he didn’t have enough energy for a full day. But it was good for him to see his friends and return to some normality.
Although Albie is in year 6 at school, we have a middle school system where we live so he won’t be moving on again until end of year 8, which is probably just as well. He has just done his SATS and his teacher advised that as he’s been unwell, it would be better for him to go in to school just for the tests so he did his exam with a TA and then came home.
Albie has always been very active and, prior to the whooping cough, was still playing football and swimming every week. He still wasn’t back to full health by his birthday in May but we had booked to go to the local ski centre with a couple of friends. He managed to do a lot more than I thought he would and although he was shattered afterwards, he had a lovely time with his friends. He feels that now he’s over the worst, he can return to his normal activities again and in the Transplant Games this summer he’s planning to compete in swimming, tennis, football and athletics!
I have to say that while I freely admit this year has been really tough, Albie has been amazing about it all, I know he’s my son, but he really has! He takes it all in his stride. He does worry about missing school sometimes, but when he goes back in ,he’s like a little celebrity, all his friends and teachers are so happy to see him. He never moans about taking his medication or about hospital appointments, when he has to have extra blood tests, he just knows he’ll get to choose a magazine from the shop. He’s coped way better than I have!
Albie is the youngest of four and although I worry that his brothers are overlooked sometimes, deep down I think they understand. I try to spend time with them in the evenings when Albie has gone to bed, and they need my help in other ways as they are older and taking exams and looking for jobs. When Albie was first ill and had his transplant, it was really traumatic for them, as we were separated. So now, when Albie has his appointments at Kings, we all go together and try to do something fun either before or after his appointment.
Albie does sometimes attend the CLDF Hive zoom calls, but he is very shy and isn’t always keen. However we met a family at the Transplant Games last year who only live about 20 minutes away, so we meet up with them in school holidays, which is lovely. Their son is a couple of years younger than Albie, but they share a love of Lego, football and Nintendo Switch! It’s nice for me to be able to chat to his mum and ask her any questions or concerns as they are further along in their transplant journey.
I remember being told by the transplant coordinator just after Albie’s operation that it would be a bumpy road to recovery, and I must admit, I hadn’t anticipated things still being challenging two years later! If I was asked to advise other parents in my shoes, I would say:
- follow your mum (gut) instinct. You know your child best and you know if something isn’t right.
- keep chasing the doctors and hospitals for results and if you feel your child needs to be seen.
- Don’t feel you have to be a superhero. I was struggling to cope with the anxiety and stress of everything and I made the decision to leave my job as there just weren’t enough hours in the day
- If like me, you’re a single parent, think about taking someone with you to appointments – an older child or parent or a trusted friend, just so there is someone else to listen properly if you’re emotional and as a comfort.
- Accept help. Adrenaline will take you so far, but you can’t live on it. After I experienced the worst panic attack at home in the middle of the night, I realised I needed to ask for help in order to be properly there for Albie. So I have had counselling and am currently taking anti-depressants after putting it off for a long time. But I do feel I’m slightly more on top of things now than I was 6 months ago.
