- A little bit about you:
Hi, I’m Jeneva from New Zealand and I am 20 years old. I am currently a student at Waikato University studying Geography and Anthropology. I am newly diagnosed with ITP since June 2016.
- How you were diagnosed:
It all began when I arrived home from university and I was watching a movie with my mum and sister. I began to feel sick, and got up to go to the toilet when I started bleeding heavily. I thought I was having my period, but in the space of an hour, I had gone to the toilet every 10 minutes literally peeing blood. That night was the worst. I had no sleep as I was up every 15 minutes peeing about a cup of blood. I started seeing changes in my body very quickly as I got extremely tired and dizzy, my legs were shaking every time I stood up from being so weak because they couldn’t support my weight, my eyes were blood shot, I began to get ulcers in my mouth, I had multiple nose bleeds, and my arms and legs formed red blood spots and were covered in large, deep purple bruises. These bruises, seven months later, are yet to fully disappear. This went on for four days, because I simply thought I was just having a really ‘heavy period’ and these were just random side effects that I was experiencing. When I realised it didn’t feel right, I decided to call my doctor.
During the doctor’s visit, I had my nose arteries closed off and got blood tests done. In a matter of two hours, I was called to go to the Emergency Department of the Waikato Hospital immediately, where a room was waiting for me in the Haematology ward ready for me to undergo a blood transfusion. When I was admitted, I was told I only had 2,000 platelets, which was extremely dangerous. My doctors began making me take high dosages of dexamethasone, and were considering a bone marrow operation, as they were not yet sure what condition I had. The next day I had an iron infusion, and was monitored very closely as doctors tried to work out why I was sick. I was in hospital for an overwhelming and scary four days, and my platelet count rose from 2,000 to 4,000 where it stayed for two days, then rose from 6,000 to 38,000 where the doctors allowed me to go home. They told me I most likely had an auto-immune condition called ITP, but would continue to monitor my platelets over the next two weeks to see if their prediction was right. During this period of time, I was on a high dosage of dexamethasone, but sadly, my platelets decreased back down to 13,000. It was at this point, that my doctors diagnosed me with ITP- something I knew absolutely nothing about. So they decided to change my medication to prednisone however, less than
I was in hospital for an overwhelming and scary four days, and my platelet count rose from 2,000 to 4,000 where it stayed for two days, then rose from 6,000 to 38,000 where the doctors allowed me to go home. They told me I most likely had an auto-immune condition called ITP, but would continue to monitor my platelets over the next two weeks to see if their prediction was right. During this period of time, I was on a high dosage of dexamethasone, but sadly, my platelets decreased back down to 13,000. It was at this point, that my doctors diagnosed me with ITP- something I knew absolutely nothing about. So they decided to change my medication to prednisone however, less than two weeks later, my platelets were right back down to less than 30,000 which meant I had to start the path of chemotherapy- a treatment called Rituximab, which has only recently been introduced to New Zealand. If chemo didn’t work, the last option for me was to have a splenectomy.
The course of chemo was hard- it was tiring, painful, draining and occurred over a four-week period. I was completely exhausted once I had received one round of chemo for that week, where my body went into shutdown mode and I slept for the next few days. But once the four weeks was up, my platelets were well above 200k. In even better news, my doctors allowed me to decrease my intake of prednisone, and have managed to get all medication before Christmas.
- How you were feeling before you were diagnosed & how it feels when your platelets drop:
Before I was diagnosed, I was healthy, enjoyed physical activities and most of my time was spent studying. I have never experienced anything like how I did when I was sick. When my platelets drop, I feel very tired and often sleep for a good 9 hours at night, then have an additional nap later that day for a further few hours. I often can’t work at my part time job because my body becomes very weak and exhausted.
- Stress / Heat:
I was a very busy person before having ITP with working part-time, studying full-time, and volunteering as a Youth Leader at my church three nights a week. Now, knowing that I need to focus on my health, I have had to drop a lot of commitments and say no to a lot of things in order to keep myself as stress free as possible.
- Sleep / Exercise / Appetite / Moods:
Since ITP, which I have now had for about seven months, I have learnt that I need as much sleep as possible so my body doesn’t get exhausted quickly. I was also advised not to exercise while I was undergoing chemotherapy and the following months after to ensure I was not putting pressure on my body too much. When I was on prednisone, I ate a lot more than I usually did, and gave in to one too many cravings. Additionally, on prednisone I had crazy mood swings, but most of the time, my family understood why. 😉
But now, a few months onwards, I am trying to exercise a few times a week, as well as try to eat as best and healthy as I can.
- How your life changed since your diagnosis?
These past few months have been a roller coaster, as I have tried to live a new life of monthly haematology check-ups, fortnightly blood tests, and I am ensuring that I look after my physical and mental wellbeing too. I am also trying to look after my body the best I can, especially because my body has become so sensitive, like when people hug me, it hurts.
Moreover, I felt like having chemo was ‘over the top’ and not necessary for my kind of condition. But little did I realise, that this is a disease I cannot take lightly, and undergoing Rituximab has benefited my health and platelet count in an incredibly positive way. Even though I have only had ITP for seven months, my life has changed significantly. But this experience of learning more about my health condition, and trusting in doctors and God to help me get better is an experience I will never take for granted. Although this has been overwhelming and scary, I know that I am in some wonderful doctor’s hands who know what they are doing in order to help me stay as well as I can.
- Fears / Worries / Future plans.
I was so scared about the various medications I was taking and the chemo that I needed however, the medication doctors put you on are there to help you, and sometimes it is a risk to follow your doctors wishes. At the end of the day, having a healthy body and normal platelets from the medication I was given is a great outcome from all of this. I worried a lot during my hospitalisation when I had extremely low platelets. I cried so much because I was scared of what ITP was about, and what I would have to go through in order to feel and get better again. Having ITP won’t stop me from the goals I have set for my future. I will continue to study and follow my aspirations, but I will also keep in mind, that my health has to come first in particular instances.
- Dealing with ‘being sick’.
It’s certainly not easy, but you have to ensure that your body gets the rest it needs to face each day. It’s not about being lazy, but taking time out for your body to reenergise. Every little thing helps to try to make your platelets stay as high as they can.