No matter how often it happens, it never gets easier. This last relapse was probably the hardest on me. I think I’m more in tune with my body now so it’s made me more aware of how I’m feeling. Not to mention it’s scary AF sometimes. It blows my mind how I can be walking and feeling perfectly fine but my body is literally shutting down and I have no way of knowing.
I typically get blood work done once a week but I had let an extra week slip in there this time. So it had been 2 weeks since my last blood draw, which didn't seem like an issue because I had been rocking this whole platelet thing! I did notice over the weekend that my gums had been bleeding more than I would have liked. So first thing Monday morning, I stopped in to get my blood drawn before I headed to work. I usually get the results by the time I reach the office but that wasn't the case this time. About an hour after being at work, I get the alert and what do you know... my platelets were low! I don't mean just a little low, I mean, hecka low, super low, insanely low!! I was at 2,000 again! What the actual eff?! Am I on candid camera? I grab my purse, tell my boss the news and start my drive to the hospital. Again, oddly calm. On my drive I talk to the doctor's office and indeed, I should go to the ER. I was more annoyed than anything. I felt fine, I looked fine, why can't I just be FINE?!
I get checked in at the ER and it's always the same reaction from the nurses, it's like they've seen a ghost. They can't believe I'm standing in front of them with my platelets being THAT low. On the plus side, I always get taken back right away! Booya! VIP Treatment! LOL
I tend to be very relaxed when I'm in the ER. I think the doctors and nurses are more scared than I am. I've kind of got this whole routine down now so I'm pretty good at it. I can almost predict what is to come once I'm admitted.
On a positive note; COVID restrictions had been lifting slowly so I didn't have to be alone this time! Although, I don't MIND being alone... I always tell people, what are you going to do, sit and stare at me the whole time? LOL But I get it, people just like to SEE that I'm OK (by people I mean my mom, she wants to see that I'm OK). Soooo I'll allow it.
This hospital stay was well documented... the staff was outstanding. The charge nurse had been there 30 years and NEVER seen an IVIG transfusion or have had to give it to anyone. Nursing students couldn't believe how fine I seemed. It was kind of amusing for me. Anyways, take a look at the photo journey below!
In the ER they started me on 100mg of prednisone and IVIG infusions.
This beautiful little bottle of bubbles is like liquid gold! It takes anywhere between 1000 and 5000 donors to create one treatment of IVIG. THAT many selfless people donated blood to save strangers!
You never really sleep in the hospital anyways but because they had to do my IVIG transfusion so freaking slow, I really didn’t sleep.
The day nurse thought I was joking when I told her the transfusion took forever. She was shocked to see it really did take that long... imagine her surprise the next day 😂
My second round of IVIG 120g started making my veins a bit irritated. It would burn when it would start to go in and I’d rub it and ice it down to help. Not so enjoyable.
Round two I started to feel a bit better... my platelets came up to 30 from 2 so that meant it was working! 🎉
However, all these boxes meant even longer transfusion time.
Day 2 brought on a terrible headache... legit the worst in my life. I had all my shades drawn in my room, lights off, TV off, inside voices being used, ice pack to help... it topped the charts as a 9/10 on the pain scale and my regular Tylenol and Tramadol weren’t even phasing me. They slowed down the infusion rate and finally gave me some stronger meds.
This was the night I didn’t sleep at all. I hate bothering the nurses but my machine always felt like it was beeping. I don’t think anyone got any downtime that night.
My arm was even angrier by now... I mean, rightfully so! 😂🤦🏻♀️
They started me on my third IVIG treatment on Wednesday but I somehow developed 2 bloody noses and still had a massive headache. Side note: Any type of bleeding is bad, and from your head, even worse. They did a CT scan though just to make sure there was a brain in there! Kidding - but they did need to check for any brain bleeds, luckily - NONE! The on call doctor decided to stop at the 20g of IVIG and just let my body rest. I had pretty much been going round the clock with infusions for 3 days straight.
While I didn’t actually fall while I was in the hospital they DID have me on bed rest for FEAR of falling. Since my platelets were so low, had I fallen and hurt myself, internal bleeding would have killed me.
I was actually allowed visitors! My husband of course came everyday and my mom and sister made it too! I told everyone else to stay home… nothing to see here folks - I’ll be out in no time! 😉
Then the most beautiful thing you could see when in the hospital - platelets on the RISE!! This meant I could finally go home after 4 very long days!!
I would be lying if I said I left the hospital feeling amazing... truth was, this relapse was the hardest one on me yet. The weeks to follow were pretty awful too. Just when I think I have it all figured out, I'm reminded that this is bigger than me. I'm reminded that I have ZERO control over my body. I'm reminded that every day, is a true gift.
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