Hydroxycarbamide and me

I know I know it’s been a minute – almost a year in fact. Yes, I come to you with the same excuses – it’s been a busy year, I’ve been working on me, travelling, eating fabulous food, working hard on my startup, being a daughter, a sister, and a fabulous Aunty Mommy. Its been a busy year – actually its been a busy two years. I’ve spent the last two years healing mentally, physically and emotionally. I’ve grown – LAWD I’ve grown.

Anyways I digress. I believe in my last post hinted that I had started treatment on Hydroxycarbamide because well – life at that point was a shitfest. I couldn’t bend over the sink to brush my teeth due to my chronic back pain (which at that point I thought was Sickle) and climbing up the stairs to my room was the equivalent of playing Russian roulette with Sickle crisis. I was at an all time-low. I was also diagnosed with depression and put on anti depressants – for a short while. It was at this point where the parents decided I needed to get REAL help.

SIDEBAR – I say this time and time again that the healthcare in Nigeria does a huge disservice to people living with Sickle cell. From my experiences from NYSC and trying to prove my variant of Sickle (SBThal) to the health service available to a total lack of psychological support which people who live with Sickle (and I’m also including carers and family members) have little or no support. Something needs to be done.

I was scared to go on Hydroxy. I had heard horror stories of blackened nails, hair falling out, skin changes, cancer, stomach upset, swelling – the list went on and on. So before I went on this journey I took a poll. I asked Sicklers I knew what their experiences had been like and it came down to a 50-50 split. One person said – you need to weigh your options. “If your quality of life is really low then it might be for you but if you think you’re okay I wouldn’t advise you going on it.” At that point – it was a risk I was willing to take.

So I started the drug therapy. It’s not a straightforward process, before I started the drug therapy I had to sign all forms of documentation spelling out that I understood the risks and I was happy to proceed. In addition to the non-exhaustive list of possible side effects listed above the major worry for Doctors is that the drug can throw your white blood cells out of whack. I started on a low dose for the first 3 months, within those months I had to be tested every 2 weeks to ensure that my white blood cell count was within a healthy range – all the while observing whether the dose I was taking made a change to my Foetal Haemoglobin.

SIDEBAR – why even start on Hydroxycarbamide in the first place? Hydroxycarbamide or otherwise known as Hydroxyurea was first synthesised in 1869*. In the 1970s Hydroxycarbamide was tested on two Sicklers to see if it promoted their Foetal Haemoglobin (HbF). Why the interest in Foetal Haemoglobin? I touch on that in So what is Sickle Cell Beta Thalassemia? Long story short the more HbF a Sickler has the less crisis they have.

I had to have my dosage changed 3 times before we could see any improvement – that meant within a 9 month period I had my veins pricked every two weeks. At the end of it my veins looked and felt like I had an intravenous drug habit!! At the start of treatment my HbF Level was at a 3 and today (more than two years later) we are at 12 with a Hb level of about 11. I have never had these levels in my life!

It’s at this point that I would like to thank the people at St George’s hospital – specifically the Red Cell Pain Management Service. It wasn’t enough to just deal with the physiological effects of Sickle on my body it was also about fixing my mind. We had group therapy to deal with depression and physio-therapist to teach us how to exercise. It was a total experience. It was a group therapy I realised that us as Sicklers have similar experiences and how we can learn from those experiences – it helped with the healing. We were given the tools to understand and manage our triggers, we were also given the insight into how we needed to be kinder to ourselves.  We as human beings can be most critical of ourselves. They also helped me to understand the difference acute and chronic pain which was a revelation to me – I’ll write another post about that because it’s important to know the difference.

This year I’ve travelled to 6 countries – The UK, Italy, Spain, Portugal, South Africa and France. It’s been an awesome year. Granted I had a crisis on two of those trips but I was able to manage myself without hospital intervention and as far as I knew no one – apart from the twin knew the difference. This is was a far cry from the Toyin that couldn’t climb up the staircase to get to her room without having a crisis, or being unable to bend over her sink to brush her teeth due to chronic back pain.

There are the downsides to Hydroxy – it’s not a one-off treatment. I’m on this for life.  I have blood tests every three months in order to ensure that my blood work is stable – within healthy levels. It adds complexity to making babies.  I can’t get pregnant on the stuff – unchartered territory. I would have to come off the medication for at least 3 months before trying. That for me is scary prospect but I guess when I get to that bridge I’ll cross it.

So that has been my experience being on Hydroxycarbamide. Combined with group therapy has given me a new lease of life. I’m still a work in progress but I’ve been given a new lease of life and for that I am grateful.  To anyone and everyone who contributed to my recovery – knowingly or unknowingly.  

To anyone who is thinking about going on Hydroxy I would say consider it.  Make sure you weight the pros, cons, the side effects and its benefits.  Apart from quality of life you must also consider that every time you have a crisis it damages your internal organs – your goal should be to reduce these episodes.  

Toodles!!! ❤️

*. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069221/#!po=38.8889