Hi everyone 🙋,
I’m going to preface this blog post by letting you know I never planned on writing it. I have told myself repeatedly over the past weeks that it would not be good for my mental health to blog about what is happening to my body. But I wanted to update you all collectively (because it is both physically and emotionally exhausting to keep explaining), and because it’s about bloody time I take ownership of this situation.
Most of you know that on July 17 I was due to fly to Tokyo where I was planning on spending 2 weeks travelling Japan, and then I was going to the UK for a working holiday. I had some contacts lined up at advertising agencies in London, and had been planning all the sweet European getaways I would have on weekends. Should have known my life likes throwing me curve balls!
A couple of weeks before my first flight, I started feeling inexplicably nauseous. I spent a couple of days vomiting everything I ate, and I decided I probably needed medical intervention after I woke up one morning and started throwing up my stomach lining.
Just a little paranoid about electrolyte imbalances following my ICU admission in May and also because I am the slightest bit dramatic, I decided to go to hospital. I spent 6 hours in emergency before I finally got a bed, and spent the whole time thinking I had been ridiculous and indulgent to go to hospital. Who goes to emergency just because they are vomiting?! I was feeling pretty unwell though and just wanted some IV fluids and anti-nausea meds and then I’d be on my way. That was Dr Morgan’s optimistic plan.
Eventually I was seen by a doctor who took one look at my extensive medical history (it literally fills volumes at Monash 😂), and decided to err on the side of caution and admit me overnight for observation. I was happy with this, I was super aware that my flight was only a few weeks away and I wanted to nip this in the bud ASAP.
I was convinced it was just my gut issues playing up, so you can imagine my shock when a doctor came to my bed in emergency to tell me my blood results had come back and I had no neutrophils. What the hell was a neutrophil?! Turns out that white blood cells are broken down into a bunch of different cells, and neutrophils are the type of white blood cell that fight bacteria. (Pro-tip: having a chronic illness is a good substitute for a medical degree).
It was a pretty big deal that I had zero neutrophils. All of a sudden everyone was very concerned about me, I was taken for x-rays to look for infection in my body, moved to a makeshift isolation for the night in emergency and started on pre-emptive antibiotics.
I didn’t sleep at all that night, but my nausea medication kicked in and for the next few days I felt completely normal. I had no appetite, but I didn’t feel sick. I also didn’t mind that I was in hospital except for the fact that I was missing my last days at work. I had lots of visitors and was catching up on all my TV shows so was never bored. My parents had left on a cruise a couple of days before I went to hospital and were not back for another week. They had intermittent internet but I decided not to tell them I was in hospital so they could enjoy their holiday, also they couldn’t have decided to up and leave the middle of the Pacific Ocean if they wanted to anyway. I was quite relaxed at this point, so lied to mum and dad for a week about working late or being at friend’s houses so they couldn’t ask me for photos of the pets or questions about the house. Luckily my brother was able to take care of the fur babies after I was admitted.
2 days after I was admitted I had my first bone marrow biopsy (UGH and GROSS). I was allowed a friend to come and sit with me, so Libby came and held my hand. I was given a bunch of sedation before they started, and then a local in my hip bone where they took a couple of vials of bone marrow and a fragment of my bone for testing (this is because blood cells are formed in the bone marrow).
I only experienced a little bit of pain throughout the biopsy, but the most unnerving part was groggily realizing I was being smacked! I asked Libby what was happening, and she told me that was the doctor spreading the local anaesthetic. Ah, makes sense, I thought. Until I realized that meant the biopsy hadn’t even begun yet, annoying. But then a minute later it was over! Quick-thinking Libby had come up with a good lie, when the true reason for the ‘smacking’ was actually my hip bone being chiseled out of my back 😳.
The results of the bone marrow biopsy were unremarkable. There was literally nothing happening in there. There were no neutrophils, and there were also no neutrophil precursors.
As the week progressed the worst happened and I caught an infection, I became very, very unwell. My throat became so sore that the doctors thought I had glandular fever. The vomiting started again and I was throwing up upwards of 10 times a day. Amongst a plethora of other symptoms, I also began having terrible fevers. I would become incredibly cold and shake uncontrollably even with layers and layers on. My parents were back by this point and would rub down my body and hold my legs to stop them kicking out from the intensity of the shaking. I would then heat up over the next hour until I was on fire, and would have to be constantly iced down. After this I would have a reprieve of about half an hour, and then it would start all over again.
My fevers happened more often that I was allowed panadol, and sent my heart beat through the roof. I had 3 MET calls throughout the worst of my fevers which were honestly terrifying. My room would suddenly become swarmed by doctors and nurses, my gown would be ripped off me to give them access to my chest for an ECG and I’d listen to them discuss all the potential things that were happening to my body.
The doctors are unsure as to whether it was because of the medication I was on at the time or my terrible fevers, but I was also having intense hallucinations. One minute I would be in a lush green rainforest swimming under a waterfall, and the next I would be in a warzone watching a girl’s legs be cut off.
Unbelievably, it took 2 solid weeks of vomiting before the doctors realized ‘oh shit, she probably isn’t absorbing any food’, and stuck a feeding tube down my nose into my duodenum at the start of my intestines (to bypass my stomach which had clearly had a meltdown). Unfortunately this made me even more unwell, so the tube was taken out and I was moved onto TPN instead. TPN (Total Parenteral Nutrition) was a massive bag of white goo that was fed into my blood 24/7. It came with a high infection risk and sent my blood sugar levels through the roof.
And THEN, salvation 🙏. The haematologists whacked me on a MASSIVE dose of steroids and the relief was instant. My fevers stopped instantly, I became more lucid, I stopped vomiting and began to be able to eat. I have also been started on chemotherapy. Over the next couple of days I gradually began eating more and more so was able to stop the TPN, and became well enough to start physio.
I’m not sure why I was so surprised, but turns out when you lie in a hospital bed and do nothing for a month you lose a lot of weight and all your muscle. I was so shocked at my weakness after my first physio session that I cried for hours afterwards. I couldn’t walk to the nurses’ station (literally 2 metres outside my room) without feeling like I was going to pass out. I have built up a considerable amount of strength since my first session, but the weakness and fatigue still floors me.
Poking and prodding/medications
- 2 x bone marrow biopsies
- Lymph node biopsy
- Feeding tube insertion (soon to be x 2)
- TPN feed
- Cannulizations x 5
- PICC line insertion
- Blood tests x 1000
- CT scans
- Dexa scan
- GCSF injections (to try reboot my bone marrow) x daily
- Blood transfusions (haemoglobin, immunoglobulin, albumen) x 15
- IV Antibiotics x daily
- Antivirals x daily
- Methylprednisolone (IV steroid) x daily
- Methotrexate (chemotherapy) x weekly
- Meds to help my stomach and nausea x a million
- Vitamins and supplements x enough to make me a Swisse ambassador
And where am I now?
I was due to have a 3rd bone marrow biopsy last week but all the haemotologists meet every Wednesday morning to discuss patients and have decided to stop poking and prodding at me, so the biopsy was cancelled. There was also talks of me having a port inserted into my neck for a plasma exchange and a bone marrow transplant, but these are both off the table for now.
The theory is that my MS drug, Zinbryta (daclizumab), has triggered my newly diagnosed immune deficiency to stop producing neutrophils, so we are waiting until the drug slowly leaves my system so that my bone marrow can kickstart. We are hoping this will happen over the next month or so. OBVIOUSLY we have kicked Zinbryta to the curb.
Nutrition-wise, I am not doing well. My gastrointestinal tract is not working properly (another immune response) so I have lost a lot of weight. I am 5’7” (170cm tall) and currently weigh 43kg. I have been placed on a strict gluten-free and lactose-free diet so it is literally IMPOSSIBLE to gain weight or muscle. Unfortunately this means I have to have the nasogastric feeding tube put back in so I can receive calories overnight. I am waiting for this to be booked in at the moment and am not thrilled about it but am also not loving the anorexic skeleton look either so I’m sucking it up.
Just as another aside because my life is not messed up enough at the moment, I had a mole removed from my ear a couple of days before I was admitted which has come back positive as melanoma. It doesn’t look like it has spread thank God, but I need to have a larger margin cut off the back of my ear to be safe and reconstructive surgery so I don’t look like a freak when it’s done. We are currently deliberating whether I should have this done whilst I am in hospital right now or if it can wait to be dealt with after I am discharged.
Mentally… HAHAHAHA. I am trying to be as positive as I can but it is difficult and I cry like a baby a lot. I keep trying to focus on the progress I have made so far though, and whilst I might still have zero neutrophils I know I have come a long way. Every now and then I am convinced I am going to die or that my life will never go back to normal, but I am doing my best to pull myself out of these slumps. Because I have been in here for nearly 6 weeks now and am stable for the most part (the biggest issue is that I am a massive infection risk and an infection could kill me), I am allowed home in the afternoons on day leave which has been a huge help, I just have to Dettol my hands constantly. I am on sleeping pills and medication to help with anxiety, and also grab every chance to be sedated because it’s fun 😎.
At the moment I am only having Dussy and Libby as visitors because they have visited me constantly throughout my admission so I am comfortable that I am not being exposed to new bacteria each time they visit (even still we take all precautions and do not touch/sit apart etc). Hopefully as my neutrophils and strength start to return I will be able to have more visitors.
Below are some mantras I have found helpful during my admission. I even made a Pinterest to save them all on. Who am I???
I have also found it helpful to make a list of things to look forward to when I am discharged. I have a lot of mini travel plans (God help me when I need to buy travel insurance) and am going to buy a new car. I have also been eyeing off an expensive yoga membership near my house which I’m going to sign up for and become a totally zen yogi. Basically I reckon I have earned the right to spend all my savings, and when I am fully recovered enough to begin looking for a new job I will begin my savings account from scratch. Money is meant to be spent anyway right??
I know I have so much to be grateful for, and there are so many people who have helped me during my time in here.
To Dussy & Libby who drop everything to visit me and check in on me constantly, I am so blessed to have you both as my best friends. Your presence instantly boosts my spirits and I know you would do anything for me. Please know I would do anything for you too.
To Karien who was my mum during my first week here whilst my parents were away, thank you for taking care of me and being rational when I was unable to. Thank you for all of the food and nourishment you provided, and for kicking my doctors into line when my specialists seemed incapable of communicating with each other.
To everyone who has sent me cards, gifts, or words of encouragement: I am sorry I haven’t been able to message all of you personally. I appreciate all of your kind messages and have been so overwhelmed by the volume that I just don’t have the energy to respond to them all, but I can’t wait to catch up with each and every one of you when I am better.
To everyone who has delivered meals to my family: thank you for taking care of my family during this difficult time. Your generosity has been amazing and I am so humbled to know there are so many people out there who want to help.
And finally to my mum and dad: you are both literally the only reason I am alive. Thank you for taking all this time off work to care for me, constantly reassuring me, performing all of the basic tasks for me that I am currently incapable of doing, wiping away my tears and being my biggest and best advocates and supporters. You are truly the best.
And thank you to YOU for making it to the end of this post! I warned you it was a small novel. Thank you for being a part of my journey. HOPEFULLY the next time I update you I will have some neutrophils 😁.
Lots of love,