Written by Jessica Kirk
Boxing Day 2017 was the day I received my first huge bruising and not knowing what I was in for. For the next couple of days, I continued to bruise quite significantly and over nothing.
On New Year’s Day 2018, I managed to get 2 massive bruises, and my partner, who is not one for visiting the doctor, said to me, “Oh, I think it’s time we get this looked at.” So off we went to the GP, still not knowing just how seriously things were about to get. I went in
and showed the GP. He didn’t seem too concerned and just said to get a blood test. So I did and went home, still thinking nothing of it, and at 8.30pm, I received a call from the GP telling me to get to the hospital immediately that my platelet levels were at 1 and I was in danger of bleeding, and if I did, I wouldn’t be able to stop the bleeding.
Still thinking not much of it. We organised my parents to watch our son, and my partner and I headed to the hospital, where the nurse looked at me and said, “Oh, you need to come with us now.”
Before I knew it, I was in a bed, and my partner and I were waiting for what felt like a lifetime. Once the doctor arrived, I was told I would not go home. I needed to be transferred immediately to Westmead Hospital as Blacktown Hospital, at the time, did not have a haematology department. I said to my partner, “You may as well go home. You only have a crappy little chair, and you need to work tomorrow. I will keep you posted.”
So, thinking this was urgent and that I would be transferred pretty quickly, I continued to wait another 10 hours for a bed and transport to become available.
When I finally arrived at Westmead Hospital, things hit me really hard. And the ITP took a toll on not just me physically but mentally. I got to the ward to read Oncology ward, and panic set in. Especially when I saw a massive sign on the wall that said no children under 12 were permitted; my son was 5 at the time. I spent 5 long days in there trying to get my levels up. I was put on so many tablets, and my levels started to rise, so they let me go home with tablets galore, one of them being prednisone.
The day after getting home, I received a call from the head doctor asking me to come back to the hospital on the 11th of January for a bone marrow biopsy as all my signs, symptoms and markers were indicating leukaemia.
I panicked and stopped in my tracks.
Thinking,” What am I going to do? I can’t die. I have a baby (5-year-old).”
I had my bone marrow biopsy, and my dad was by my side. It was done with a local anaesthetic and the green whistle.
Five days later, I was back at “Hotel Westmead” as I had a nosebleed, and luckily, the results of the biopsy were back. The good news was it wasn’t leukaemia, just ITP.
I spent another two days at the hospital. It was hard to have my son come and see me on the ward. He wasn’t allowed because of his age, and I told my family, ‘Don’t worry about coming in. It’s too expensive to park here.”
The doctors were going to try me on a new medication called IVIg. It took some time to arrive, and later that night, the IVIg was hooked up to the drip and would spend the next 8 hours going through not one or two bottles but six bottles of the IVIg.
Over the next couple of days, my platelet count started to improve, which was terrific, and I was discharged at the end of January, again with a pharmacy of tablets and again with prednisone, plus another to stop me from having a period as it was way to dangerous to have one.
I didn’t realise how much this disease would take a toll on me, and over the space of a few months, I had to quit my job, I gained a lot of weight, and the lack of sleep made me feel like someone else entirely. I made the hard decision to move back in with my parents as I needed support to help look after our son. The pressure it put on my partner was huge as I was so sick, and he still needed to work to be able to provide for us. It impacted everyone around me in ways I couldn’t imagine.
Between January and May, I visited Hotel Westmead over 20 more times for IVIg infusions, which meant I almost missed our son’s first day of Kindy.
Then, the unexpected happened. In May, we found out that I was pregnant, which was a massive shock as I was on medication to stop my period. My specialist was not thrilled at the news, but we’d decided that we were given this little baby for a reason, so my family stood by us, and we were introduced to one of the most amazing Haematologists, Dr Jenny Curnow.
I thought my life was hard just dealing with the ITP alone, let alone throwing a baby in the mix.
Over the next 9 months, I would spend even more time at the hospital between baby appointments and regular IVIg infusions. I started off on monthly treatments on Sundays at the hospital, where I would spend the entire day knowing my little baby was OK and this was worth it.
The IVIg didn’t last the whole month, so after 2 months, I started to have infusions every 3 weeks. By the time I reached 6 months pregnant, I had reduced again to every 2 weeks. This increased again when I reached 8 months, as I was now having infusions every week.
The pregnancy was classified as HIGH RISK, so I was managed by the high-risk unit at Westmead Hospital and was under the care of Dr Nayyar, another amazing woman I can not speak highly enough.
And as if things couldn’t get worse, my body decided to add in through placenta previa* into the mix.
At 37 weeks, I had a little bleed and was told to make my way immediately to the hospital. I was met by Dr Nayyar and was told that I would be on strict bed rest and probably remain in the hospital until the baby arrived.
We talked about my situation with Dr Nayyar and asked if it would be possible to induce me early as I didn’t want to be in hospital for three weeks alone, and my mental health wasn’t great.
She discussed it with her colleagues, who agreed it would be best to induce me early.
On the 8th of February, I was induced. At this point, we thought that my placenta had shifted, so I had an epidural just in case I needed to have an emergency C-section. They said they would let me labour as naturally as possible unless things took a turn. And just as luck would have it, my luck turned. When they tried to break my water, they accidentally ruptured the placenta, which caused a lot of issues, including it moving away from the uterus wall.
Things went from bad to worse.
I remember the nurse pressing the emergency button and people coming running in from everywhere, and my poor partner had to stand back and watch the whole thing, which was completely traumatising.
I was rushed off to theatre for a general anaesthetic. Just before going under, the head obstetrician was so caring. He came in, looked at me, and said, “There’s no need to cry. You’re both in the best hands.” I replied, “I am not worried about me. I’m worried about my partner and my baby.” He assured me that he’d just come from seeing him and told him that he’d have me and the baby back to him in no time.
Our little boy was born at 4.05pm; however, I didn’t wake up for another four hours as I’d lost more than half my body’s blood and needed three blood transfusions.
I was placed in ICU to recover, and I finally saw my partner and our baby at 9pm. It was a very scary few days recovering in hospital, but I made it, and so did our little boy.
Over the next year, I had several more hospital visits as my platelets kept falling, and at the end of May, I was back to the beginning with a platelet count of 1.
I’d had enough! I pleaded with my team to remove my spleen and that this was not the life I wanted with two young kids, spending more time in the hospital than at home. The team agreed, and it was finally going to happen. Before the surgery, I had to have more tests and immunisations. I stayed in the hospital until my surgery, which was booked on the 28th of May.
The surgery went OK, but like with the delivery of my son, I took a turn and ended up back in ICU. I was still breastfeeding, so my amazing mum spent countless hours at the hospital with me and my son to help out. She is such a superwoman that she was sleeping on the floor in the ICU ward while my partner was at home looking after our eldest and was finally discharged in early June 2019.
For the next 18 months, I lived life in remission from my ITP, with not a single stay in the hospital. It was great.
After my brief stay in remission, I’ve had another baby, and this time with no complications from my ITP.
I’m still not back in remission, but that’s OK. I’m not as bad as I was, and I have a review every 6 months.
I’m hoping to get back to remission, but having the splenectomy was the best thing I’ve done. It’s not smooth sailing being immune compromised, but I would rather have that than the quality of life I had before.
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