What is the price of my miracle treat many? Too high


The life of someone with multiple chronic disorders.

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Just making that made me feel better. It gave me a good laugh.

Seriously speaking, I’m a little shocked at my own negativity. But really, I’m just letting off steam. There’s been a lot going on, and I needed to vent. just so you know, I’m warning you right now that that is what this post will be.

So, I haven’t really told you guys my story, but now I need to give you a little background. Were going back a little more than a year ago.

I’m anaphylactic to spring pollen, so as you can imagine, spring can be really,really crazy. To make things worse, I didn’t know about preventive measures so I didn’t go outside with a mask and I sat in a classroom all day with the windows open because my school refused to close them.

We used a epi pen about every three days. That means in was having a life treating allergic reaction every three days. In addition to that, the way I present is that  after I go into anaphylaxis, I wind up not being able to eat for days after. So I was constantly having dangerous reactions, and constantly not eating or drinking,  which is just as dangerous.

Suffice to say, I was not in a good place. there was only one treatment that was helpful. normal saline through a iv line. i know it sounds crazy that with every steroid, every anti histamine, a iv line with normal saline  was the only thing that worked, but its actually  one of the best treatments for mast cell patients who aren’t doing well. the iv washes out all the histamine that floods my body after a reaction.

the problem? it was only experimental at that time, though now its more widely used. and my mast cell specialist, though she is amazing, has no hospital rights. so our plan was(i’m really not kidding i couldn’t make this up):

have a reaction.stop being able to eat or drink. wait like three days until i can claim dehydration. once i was dehydrated, i could just walk into the er and ask for fluid.

i mean with a plan like that, what could go wrong?

once the er knew me from being there so often (“she’s here. set up a lind and get her started on fluid. bye, see you again i three years days” ) and they saw for themselves how much the fluid helped, i was able to go as soon as the reactions started.

but it was too little, too late. we went to the er right after i started a serious reaction, as always. they called my doctor, started to a line.

and then my mother left for a minute. i started coughing i felt like i could not breathe.. they immediately gave me alburtetaral.Okay, not so crazy. sometimes it Takes time for the fluid to work. but it easenteorkkin. i felt really tight.i could not breathe. my mother came back and asked if i was ok. i shook my head no. i couldn’t speak.. the color drained  from my face until i was a gray.

They quickly injected an epipen into my iv line(subq. its the fastest way to get the medicine into your system). i was completely unresponsive. my entire body visibly shock with spasms.

they gave me more meds. they gave me the most oxygen you can give.and they called in the respiratory team to incubate me. my vitals were crashin. they told my mother they weren’t sure if i would make it.

and then, something kicked in.vitals stabilized. i stopped shaking. i did not need to be incubated. but we had come way too close. my doctors knew that the next time i might not be so lucky. it was time to be start acting,instead of reacting.

so my doctor (a different one, not the allergist)wrote a script for me to get iv fluid at home. we had  a nurse come down to my house three times a week until we found a more permanent solution. i ended up getting a mediport.

the transformation was unbelievable. every doctor we. went to (and there were many)was sure it was the right thing to do. i finally started having good days. there was hope i could start adding new foods to my severely restricted diet.

i didn’t need so many medicines. i was out of the er. i was doing so wekl. my disorder was at last being managed. it seemed like we had finally got it right.

then, one day, at a appointment at my allergist i started shivering from cold. my leg was swollen and red and really hurt. that night, when i got chills again, i had 103.

an unexplained fever with a port means a trip to the er. they did tests and found i had:myrisa, a an infection in my blood, atypical  pneumonia  in both lungs and endocarditis, a infection in my heart.

i spent four weeks in the hospital where further testing revealed that i had a sack in my lungs lungs with the infection. that meant that at any time pieces of the infection could break off and attack my whole body. this is called called septic shock, and can be fatal.

i don’t know how many times people told me that my port almost killed me. it was a awful,awful time and i wouldn’t go into detail here. but everyone, me, the hospital doctors, my regular doctors told me “never again.”

It was difficult for me to come to terms with the reality that i would be as sick as i had once been. that i could no longer use the one effective treatment. but an infection in my heart after six month of a port convinced me that it was really too dangerous.

Ok, i don’t want my post running too long. ill tell you about whats going on right now next  post.

To be continued…

confused about why iv fluids help?here’s an explanation

Discover more about the challenge….

Every post, I will reveal to you a little more about the challenge.

I am building a whole new website. Each day, after you complete the challenge,you will use the link i sent you when you sign up. and find a new page with that day’s reward for the challenge!

The challenges themselves will still be posted right here, as posts.

so what kind of reward are we talking about? Today i will tell you just one. Check back tomorrow for more!

 

 

Get an adorable new character every week until you become a ninja.

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2 thoughts on “What is the price of my miracle treat many? Too high

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