My opening statement… worst experience of my life.
Obviously, I am still in recovery mode from a terrible experience with IVIG therefore I am still in a shitty mood about what has happened. I understand everyone’s experience with IVIG is not the same and I do not wish to scare others away from this type of treatment. However, I still feel it is important for me to share my personal experience.
So why on earth did I get IVIG?
Well my levels went from 44,000 in December to 30,000 in January. Usually that is not a concern for me because my levels were still above what I like to call a safe zone. However because I had a recent trip to Miami booked my substitute Doctor felt it was best that I do an IVIG treatment before I left overseas to ensure that I would have safe travels. Now although I like the no treatment method I agreed with this decision because I wanted to be safe when travelling overseas and on the plus side IVIG had the potential to increase my levels for months so to me this was a win win. Therefore, I was booked in a few days before I was due to fly out.
I had organized two days off sick from work to cover the two days of treatment. I was nervous about how the IVIG would make me feel but I was also optimistic. I brought Gatorade with me to keep me hydrated and my mum with me for moral support (god love my mum). I arrived early – keen as a jellybean for my treatment however arriving early does not mean you get in early. Therefore, mum and I waited until it was my turn. Finally, they called my name and I jumped up and was like let’s get this show on the road.
I went into the cancer treatment ward, sat down on my blue recliner chair and a nurse came over to check my name, DOB and if I had any allergies. I then had a second nurse come over to me, she put the saline on my stand and was getting ready to administer my needle. I did ask if I would be given Benadryl however, she just stared at me with no response (probably because in Australia we have Panadol not Benadryl – luckily for me I brought some Panadol and took it before they started). This nurse honestly did not look like she was pleased to be at work. I was a little terrified of her. Just when she was about to administer the needle another nurse came in and took over – thank goodness I thought. He was lovely and the needle went in smoothly then he disappeared.
I then had a couple of nurses set up the IVIG. Everything was going as planned, they started it off slow and I did not have any issues. No allergic reaction, not even a headache. As the time passed, they then increase the dosage and apart from a mild headache, I was feeling good.
As we began to get to the end of the treatment, I was keen to get out of that chair. My gosh I have never been so bored in my entire life. I was in that chair for over 5 hours, just sitting there waiting for the IVIG to slowly drip into my body. The nurse literally took out the needle and sent me on my merry way. It was so good to get out of that chair. I felt good at the end of the treatment; still only had a small headache.
I even dropped my mum off, drove home and although I had submitted sick leave for the day jumped on emails and did some work (hate having to catch up on work so I like to try to keep on top of everything as much as I can). I kept drinking water until it was bedtime and went to bed. Thought to myself so far so good.
Then it happened….
Middle of the night…..
My brain felt like it was exploding in my skull
THE PAIN WAS HORRIFIC
Then I started to feel sick
When I stood up to go to the bathroom. I fell straight back down, for some reason standing made my head worse. Therefore, I had to crawl to the toilet and that is where I stayed Vomiting and crying because I was in so much pain.
I knew by early morning that there was no way I could make it back to the hospital for day 2 treatment. To be honest I did not think there was any way I would even be able to leave the bathroom floor.
My mum rushed over and spent hours on the phone trying to call the hospital to cancel my 2nd appointment. When she finally reached them, they had advised that I should seek medical help. Mum’s plan was to take me to emergency but the hospital called back and told my husband to take me to a local GP to confirm that what I had was not from the treatment.
I somehow managed to flop myself out of the bathroom, out of the house and into the car. I could not walk more than 5 steps without my brain feeling like it was shaking inside my head. The pain was so severe that I would collapse.
My husband took me to the local GP who looked me over and said this is from the treatment. You may want to take her to emergency or she can try and sleep it off at home it’s your choice. My husband took me home and I fell asleep. He then proceeded to call the hospital and they told him if I am sleeping just let me sleep it off.
I woke up and the vomiting had begun again. My husband asked if I wanted to go to emergency and I stupidly said I‘d be ok. Took some more Panadol and pushed through.
The next morning I felt much better. Still had a headache but nowhere near as severe. In addition, I could actually walk. Based on the previous day I felt like a million bucks. I went in to the hospital, got my bloods done and visited another substitute doctor. Turns out what I had and still am experiencing is aseptic meningitis from the IVIG treatment. This doctor seemed unhappy that I had IVIG a few days out from travelling and I believe even more unhappy that I cancelled round 2 of IVIG. Nevertheless, she felt I should feel fine by Monday to travel overseas.
Every day I am feeling better (it is now Sunday) however, I had to make a call about my upcoming trip to Miami. The doctor at the hospital advised by Monday I should be fine to fly which made me happy however, I decided to get a second opinion from another local GP. He told me he could not guarantee I would be ok by Monday and I may want to reconsider travelling. Therefore, because my head still feels swollen (aseptic meningitis is inflammation of the brain and spinal cord) my boss and I felt it was best for me to cancel my trip. Better safe than sorry.
As much as I am really disappointed and really wanted to go to Miami. I really do not want to be on a plane for over 20 hrs with a swollen head. I could not imagine experiencing what I have just experienced at home on a plane. That would be a nightmare.
Overall, my experience with IVIG was not great. Nevertheless, on the plus side my platelets have increased to 139 – so there was a positive out of all of this.
Would I do IVIG again? If something puts you in excruciating pain – would you do it again?
I will be honest I would only do IVIG again if it was a matter of emergency and that is only because of the experience I have just had. Let it be known that aseptic meningitis is a rare side effect of IVIG and unfortunately, I was one of the lucky ones who has experienced this side effect.