Thursday, December 22, 2016

Week of Craziness: Status OVER

Mission: Take Back Ground from the Nasty Masties

Phase 2: Xolair

Phase 3: Port Placement

Status: Done and done!

This week of craziness is finally OVER! Now to commence with recovering from said craziness...

Monday morning I got my last Xolair of 2016. While I have not been doing well the past couple of months, I have not forgotten how much improvement I saw from the Xolair earlier this year. I am so thankful for the months of "health" I did have this year, and I hope and pray I will get back to that again in 2017.

PLUS, I found out that I still have one more dose of Xolair left. This was amazing news!!! Somewhere in all the mast cell mess, with my skipped and delayed doses, I ended up with one vial left. That means that I can get my Xolair on time the first week of the year while we work on getting it re-approved for 2017. I am SO THANKFUL. When I miss a dose, it's almost a guaranteed rough week of increased symptoms, and lately has also almost consistently meant anaphylaxis. Having the extra vial means *hopefully* we'll have enough time to get approval for 2017 without me missing a dose while my insurance company reviews all the paperwork. I'm thinking this is more of a God-thing than just a happy coincidence =)

Anyway, Monday was still my last Xolair of 2016 (since my next dose won't be until January). It actually went better than expected since I was still riding on the IV meds from Sunday's ER trip. I still had my usual post-Xolair headache, muscle aches, etc. but nothing too severe initially.

Tuesday morning was port day! We had to be at the hospital at 9:30 am to check-in with my procedure scheduled for 11 am. Nick was able to take the day off, so he went with me. I'm going to go into a bit of extra detail here than I normally would (so if you're at all squeamish about medical stuff, stop here!) because I had very little idea what to expect, so I'm hoping that my experience can help someone else in the future.


As I mentioned in my previous post, due to my severe reactions to pretty much all sedation and anesthesia, we decided for me to have the port placed while I stayed awake. Part of me felt super hard core being able to say I was going to have surgery while I was awake, part of me was so relieved that I wouldn't have to deal with anesthesia again, and part of me was nervous that it was going to hurt like crazy! So many mixed feelings!

Overall, I am very glad we chose to do this with no sedation. I think it helped my recovery be much less intensive and kept things from getting too exciting during the procedure. That said, it was a bit more overwhelming than I expected. There were 10-12 people in the surgical room, lots going on that I couldn't see, and I only knew something was happening when a doctor or nurse told me. My initial thought when they were prepping everything was "I don't know if I can do this..." But I did, and it went just fine.

The worst part was right at the beginning when the doctor injected lidocaine to numb where he was placing the port. He numbed the surface first which stung but wasn't too bad. After he made the initial incision, though, he had to numb inside where the port was going to sit...that hurt a lot...Eventually that faded and all I could feel was tugging and pressure and pushing. It was a very weird sensation to be able to feel but not have any pain.

Once it was done, it was covered with a dressing and I was sent back to the recovery area for about an hour to make sure everything was okay. Thankfully, I had no issues during the procedure and so far have been recovering well at home! I am pretty sore and it feels very tight and stiff, but I'm not in too much pain. I have started to react to the dressing, though, so we are in the process of figuring that out...thanks mast cells, thanks...I only have to keep the dressing on one more day, so that should help considerably. (Also, stay tuned for a photo of Mortimer, aka Mort the port, once the dressing comes off!)


So what's up next in Bokatopia??

Well, as awesome as my doctors are, they do like to spend time with their families over the holidays...so nothing much, at least medically...we hope...I don't have any appointments scheduled until after the first of the year, and at that point we will make some decisions about what we need to do next to get things under better control. In the meantime, we are hoping and praying that my body will play nice so that we can enjoy spending time with family during the holidays instead of making friends with new ER doctors and nurses.

As always, thank you so much for walking through this season of life with us! This was not just a whirlwind of a week but has been a far too eventful couple of months. My body is worn out and tired, and it is only thanks to all the prayers said for us that I was able to handle this crazy week without any severe reactions since lately even sitting in my bedroom has been enough to cause anaphylaxis at times. Thank you for encouraging us and supporting us and giving us reasons to smile even when life is tough.

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