Entyvio and Everything Else

Blog post

[Image: 3 spoons laying on a laptop in black and white, a piece of paper with a paper clip on the edge, with the logo for Entyvio and words beneath that say “And Everything Else”]

My sed rate (inflammation levels) three weeks ago was high and so my doctors mentioned starting Entyvio, a biologic drug similar to Remicade but attacks the white blood cells that create inflammation (at least that’s how the doctor explained it to me). It is administered through IV infusions, the first two infusions two weeks apart, and then 4 weeks, and then 6 weeks, and then every 8 weeks. Although if it is anything like Remicade for me, I will never get passed every 4 weeks. My body builds antibodies to things rather quickly.

Cincinnati ordered a redo of my labwork last week to monitor my sed rate levels. This time it was only 11 which is normal. I said it didn’t make sense for it to go from 52 to 11 in a week with no help, my PCP claimed it was an infection or something despite my WBC (white blood count) not being elevated. I claimed it was a lab error. She told me I should just be happy it was normal, despite feeling rather hellish. Cincinnati agreed with me though and reordered the labwork which proved I was right because my sed rate was high again.

As of today my doctors are trying to decide between just ordering 20mg of prednisone to hold me over until they get everything ready for the Entyvio, or admitting me into the hospital to do a full dose of prednisone via IV, this would also allow them to do the port placement that my doctor agreed would be the best thing for IV access since my veins , and to quote the last phlebotomist who had to stick me, “suck”.

image4 (21)

[Image: diagram of the upper thoracic level of the body, showing the heart and how an implantable port works]

Basically it is surgically placed under the skin and threaded into the heart, I will still have to be stuck, but there won’t be a need for 5 IV attempts anymore because they will be able to just “click” into the port and have access. The other option was a PICC line, but he said that since PICCs are more temporary for only a few weeks or so, and it is going to take 12-14 weeks on the Entyvio before we will be able to even tell if it is working or not.

They will also use it to draw labs before and after infusions to check for one of the rare side effects with Entyvio which is PML Virus. It’s a rare brain virus with no treatment or cure and basically just destroys your nervous system. So if there is any signs of that then they will not do the infusions.

Of course we have no dates set for anything yet because communicating through MyChart is much like emailing each other, and therefore they probably only check it once or twice a day.

Of course all of this is the least of my worries right now. My dear friend, Ari, who I have talked about before, is in bad shape. She has been in the hospital for a few weeks now, she got her central line removed a while back to sepsis and had to get a PICC and then the PICC line got infected and abscessed and a blood clot formed. They were able to dissolve the blood clot and remove the PICC, they replaced a central line in her neck until they could schedule the surgery to place on where they normally go.

They told her that her veins are too weak for anymore PICCs or replacement Central lines. They told her they don’t think she will survive another bout of sepsis (this being her 5th or 6th bout this year) and that if she doesn’t do injections daily she will also likely develop another blood clot.

Ari has been fighting all her life, and is by far the strongest fighter I know. She’s getting tired of it though. Considering they have told her there is nothing they can do for her pain management since all her medication must be through IV. And it’s really just not fair.

Everything she does she does for others. She sends out care packages, is always offering support to others, does anything she can to raise awareness. Her only two wishes so far are she wants to start a 5K race for Ehlers Danlos Syndrome, and she wants to meet me.

Between college and everything I am doing all I can to try to plan a way to fly out there and spend whatever time I can with her. I have never flown though, I don’t know where I would stay or what you do when you get off at an air port. So I would need someone to go with me. I’ve been raising some money to help through gofundme, but even if it doesn’t get filled I will use student loans or something because nothing would make me happier or her happier than seeing each other.

I have been trying to find ways to cheer her up between painting and I had my friend Bella draw her and I together in hopes it might perk her up while in the hospital and keep her spirits up because I cannot imagine how hard it is on her. I know how hard it is on me just watching her suffer but it doesn’t compare to what she is going through.

[Images: First image shows a zebra and where the white of the zebra would have been it is rainbow coloured, as is the mane. The second image is a digital art drawing done by my friend Bella Black of Ari and I sitting together, she has a flower crown on and a pink top and capri pants. I am wearing a green shirt and shorts. ]

A while back I wrote about what it felt like to lose someone in your support group. Those were people I did not know. This is not the case. I know Ari. She is my best friend. I cannot imagine what my life would have been like without her and I certainly cannot imagine what my life will be like when she isn’t here.

She has said she doesn’t want people to be sad when she goes, she wants us to celebrate her life. She wants to be cremated and put into one of those trees. She is the most positive person I know. I love her. She is such a beautiful person. She deserves the world.

If I can give her even 1% of the world she deserves, that would mean the world to me.

This is why awareness matters. Perhaps if Ehlers Danlos Syndrome was better known or if Gastroparesis was better known, then maybe more would be done about these illnesses and syndromes that wreck havoc on people’s bodies.

Ari isn’t giving up yet, she is a fighter. The strongest fighter I know. You can follow her journey on “Oh the Places We Will Roll” on Facebook. 

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