Thank *god* my port accessed

I actually start trembling the moment I realized my port was working. I didn’t even realize the depth of how scared I was until my hand started trembling as I tasted the saline flushing into my bloodstream.

Thank God.

I know patients aren’t supposed to access their own ports, but a home health nurse taught me a long time ago…probably because she felt I was wasting her time…I think most medical professionals don’t want to deal with me, because they’re so confused because I look so healthy…the fact I can back up my crazy health stories with thousands of pages of medical records, only irritates them further.

Thankfully, I really like the home health place here in Ottawa, that also has a clinic that you can go to as well (if you’re not so sick you need someone to come to you…which now, I need someone to come to me…) Thankfully, the nurse there is very friendly as well.

I just have to get orders to go and see her, which I will on Tuesday, but I can’t wait until then…I have to get started tomorrow, after I get the Benadryl…

Since it’s getting harder and harder for me to stand, I decided to access the port right now, one, because tomorrow I really might not be able to stand, and two, if my port was slammed, I needed to come up with a back up plan, and fast.

Now, I just need someone to get me some Benadryl…I need some Benadryl…

(Vanco makes me a little red and itchy the first time I dose up, it goes away with subsequent doses, it’s just the first dose or two is always brutal…Benadryl seems to help–)

Just like I was scared accessing my port, I’m even more scared about starting the Vanco tomorrow…how is my body going to react? I sure as hell I’m praying the Vanco ducking works on whatever I have growing in my blood stream–

(I know starting on my own tomorrow is going to raise holy hell in the minds of some doctors (not just here, but frankly everywhere) “what??? You started yourself on Vancomycin without any kind of proof of positive blood culture, or in fact, without ANY blood work at all???”)


I’d rather be alive to tell you all about it too.

At the rate I’m going right now, without medical intervention I got probably 5-6 days left, tops…

In an ideal world, id have my blood cultures pulled and then get started, but this isn’t an ideal…

I don’t pull out the Vancomycin unless I’m feeling very very ill. I long put it aside, because I knew I needed to be more careful with it, to save it, to make sure it still worked–

Save Vanco, for days like this…

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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