ITP Awareness Month – My Story

itp

September is ITP Awareness Month, an illness that’s very close to my heart.

About a year and a half ago, maybe a little longer, I shared my story with you all on my blog, about what happened to me and how my life was changed forever.

As there will be a lot of people reading this who didn’t follow me back then, I wanted to tell my story again, but also because this year has been one that’s really changed me, and so I wanted to retell the story, as I am now, with my different outlook on life.

3 and a half years ago, my life changed forever.

It was coming up to May Bank Holiday and everyone was gearing up for a long weekend of celebrations. I’d woken up a few mornings in a row with a mild nosebleed, but I hadn’t thought anything of it.

On the Sunday evening of Bank Holiday, I stayed with a friend, and when I woke up in the morning, my nose was bleeding again, but this time there was something else; my gums were bleeding too. I was a little bit panicked because aside from brushing my teeth a little too hard, my gums had never bleed before. And this was a lot of blood too.

I went home and tried to calm myself down; I don’t know what I told myself it could be, but I tried to reassure myself that I was fine, and it was just some random bleeding that didn’t mean anything sinister.

I had a mid afternoon nap and when I woke up the bleeding in my gums was so severe that I had a constant mouthful of blood.

I went with my parents to Lewes Hospital; if you live in Brighton you’ll know that you end up waiting about 6 hours to be seen in the A&E department of the Sussex County Hospital, so we went to a quieter hospital so I could be seen quickly.

I laid on a bed in a hospital room as an elderly nurse had a look at me, and it was then, in horror, that for the first time I noticed something poking out from the bottom of my jeans on my ankles. Dark purple bruises.

I took my jeans off and saw that my legs were covered from ankle to thigh in black and purple dots and bruises, and they were travelling upwards, beginning to appear on my stomach too.

The hospital that we were at didn’t have the facilities to properly look into what was going, and advised that we needed to go to the Sussex County. We went back home just so I could pack an overnight bag in case I needed to stay overnight. Just before we left I went to the toilet, and what happened was something that even today I can’t remove from my mind.

If you’re squeamish then I would skip this part, but I’m going to be entirely honest and not sugarcoat anything; I urinated pure blood. There was nothing else but blood coming out of me and I felt like I was going to faint.

I screamed my head off and my mum came running in, and I told her what had happened. They bundled me into the car in minutes and we drove to the hospital; as we walked into A&E, I was dripping blood onto the floor as it flowed out of my nose and mouth.

There was a queue of people at the Reception and I remember my mum pushing to the front and saying that I needed to be seen right that second. There was a nurse with me in seconds, taking blood samples from me, inserting a cannula into my hand, and taking me to a private room.

As I was waiting for my blood results, someone came in with a cup full of 35 steroid tablets that they said I needed to take. I wasn’t exactly sure why but I took them.

We were then waiting for what seemed like an eternity for my results; my parents were informed that all my symptoms pointed towards leukaemia (cancer of the blood) and they needed to be able to rule it out urgently.

Finally, they told me it wasn’t leukaemia, and it looked like it was something called Idiopathic Thrombocytopenic Purpura.

It is a disease where your immune system destroys it’s only platelets. Platelets are what clots your blood, and a normal person should have 150,000 to 450,000 per microliter of blood. They told me they needed to re-do my blood tests as they’d received a strange result, that said I had 0 platelets.

They re-did the tests, and again, they said my body had 0 platelets. I remember the nurses and consultants telling me they’d never experienced someone having 0 in their careers before.

My body had destroyed all of my platelets, meaning I had nothing to clot my blood. I had no open cuts for the blood to come out of, so it was coming out of my nose, mouth and bladder, and I was also bruising all over my body. My gums and tongue were covered in big red blood blisters and I even had black bruises on my face.

I had to have a CAT scan on my body and head, as they were worried I had a bleed in the brain which could be fatal.

Luckily I didn’t, however I was bleeding from my kidneys and haemorrhaging in my right eye.

I was so fortunate that during this whole horrible time, I was given a really nice hospital room on my own, as my first 2 nights I was in a main ward sandwiched between 2 elderly men who were really poorly and up all night.

I had amazing nurses and an amazing consultant, who literally did save my life.

I spent days upon days of having blood and platelet transfusions, but the issue was that my body was just pouring the blood out again.

I had haemoglobin given to me as well, and lots of other drips, injections and pills. I had to go on the contraceptive pill (I wasn’t on the pill at the time) as me coming on my period could’ve been really dangerous as I couldn’t afford to lose anymore blood.

I was given a hormone injection, I cannot remember what it was called or what it did, but it seemed to work miracles because I gained 1 platelet, which was nothing in the long run but it meant I was slowly improving.

I was in a wheelchair, because I was extremely weak and also if I’d have walked and fell and cut myself it could have been really dangerous. I had never broken any bones before, or really ever needed to go to hospital, so for all this to be happening was just so foreign to me, and I felt like it wasn’t really happening.

It was one of the hardest times of mine and my family’s life, the not knowing, the  time spent in hospital. My ward was the Haematology & Oncology ward which was for people with blood related diseases and cancer, so the visiting times were pretty strict as there were very, very poorly people on my ward, and so I spent a lot of time by myself in the room. I had a lot of time to think about how everything had changed in my life so quickly, and it broke my heart.

I am 100% fine now; I had non stop check-ups after I was discharged, and then about a year and a half later I had them every six months. I had my last one in February and was officially discharged from the care of my blood consultant, with the reassurance that if I ever have symptoms again, to come straight to hospital and they can help me.

I wanted to share this blog post as I want more people to be aware of ITP. I had no idea it existed, nor did any of my family or friends, when I was diagnosed, and it’s extremely rare. Only 3 in every 100,000 people get it in their lifetime, and so it’s not something many people are familiar with.

I want to raise awareness, and give hope to any one going through it right now to have hope, and faith in your own body’s ability, and the ability of the medical profession, to get you through it and make you better.

I hope everyone enjoyed this post and I’ll speak to you all soon!

All my love BGP xx

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