Monday, August 13, 2012

Remicade: 1 Crohn's: 0

Today we went down to Littleton for Ryan to receive his first Remicade transfusion.  It went smoothly and he did wonderfully.


He was hooked up to a standard arm IV and began a regular saline drip to start.  Then our nurse added the Remicade viles one at a time over the course of about 3.5 hours.  Praise the Lord we do not pay this price tag, but this magical drug runs at $1,000 per little glass bottle.  And they administer your dose based on weight: you weigh more, you pay more.  Good night that stuff if pricey!  But it works, so I suppose the medical industry will charge whatever they like.

We brought along the iPad for Ryan to watch TV shows or check his e-mail, and one or twice he dozed.  It was a relaxed visit and went as well as we could have expected.  It did leave him fatigued and with a headache which we're told is normal.

Random facts: Remicade is an immuno-suppressant and is a genetically engineered antibody that blocks inflammation caused by a protein called tumor necrosis factor.  It basically shuts of his immune system, because it wrongly attacks his healthy tissue thus causing a flare up and all the other nasty side effects of Crohn's.  Having no immune system is a little scary, especially with cold/flu coming up soon but we will try to stay healthy around here!

So while Ryan was a rockstar today I was struck with the most heinous case of menstrual cramps (sorry for the TMI) during our entire 3.5 hour visit, so alas I was curled up in a ball on the second chair in the room.  Our nurse finally had mercy on my and "found two motrins in her purse" for me to have.  Blessed drugs, I never thought I would say this, but how we love you.  I'm left feeling totally drained today and so looking forward to health, energy, and restoration.  We'll keep you posted on how he progresses this week.

Studly husband all hooked up in his armchair

Remicade goodies.  We love you, whoever you are, that invented Remicade

Our set up: two big comfy chairs in a room with fancy dimmer lights.  Very relaxing :)

8 comments:

  1. I have to say Ryan looks awesome! Who would have know? I am so happy he is getting treated! This made my day! And poor u, here's a little mentrual tip...get some rice grains like 3 or 4 cups, pour them into an old sock,and microwave it for about 3-5 minutes. tuck it around your belly...kind of like a water potter, but it perfectly fits around your tummy and feels so goood. They are also great to place around your neck and shoulders...long socks work the best....just make sure you tie the end! Haha! :) Luv vee

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    1. I'll do it Vee. We don't own a microwave though so sometimes I just fill up a water bottle with very hot water and do exactly like you said. Heat is the best. Ryan really was a rockstar today--so proud of him He is back up a few pounds which is also excellent news!

      And you're sick!?! What's the problem?

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    2. Oh, yes the water bottle will do it if all else fails! :) I don't quite know whats wrong with me, I suspect some sort of flu. I have been coughing up blood, sore throat, aches chills, fever...the whole nine...nasea...lol Oh and yucky puss and goo in my eyes, they are blood sho tred. I keep thinking I am on the mend, and then over exert myself and wind up worse, this has been over the entire weekend. I called my doc tonight though to go in tomorrow! So I guess we shall see! I am sure I will be better soon, just need to rest! :)Thanks for your concern!

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  2. water bottle * correction, not water potter...lol Its late, i am sick! LOL

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  3. Carly, I've been reading all of your posts and have been praying. I'm sorry for such a difficult road right now, and I'm especially sorry for the cramps! Ugh, the awful timing (although I feel like their timing is always awful). Praying for you and know you're being a light even if it doesn't feel like it. :)

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    1. I'm so glad you're reading Sara. It has been pretty dang hard. And I sort of felt like a wimp complaining about cramps when Ryan has been through so much. But I appreciate you resonating with me because cramps DO suck!

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  4. Ryan is so BRAVE!!!! I cannot stand the sight of needles but he is handling it like a champ. I pray to God that this is where CROHN is put to halt!!!! I cannot believe how expensive medication is but PRAISE God, y'all don't have to pay for it. I definitely feel for those who have to . Health insurance is a BLESSING... Cramps are never fun.. Rooting for you and Ryan EVERYDAY!

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    1. We pray that too Kay--halt the Crohn's in Jesus' name. I actually hated needles before too but now I watch all his IV's and shots. They had to give him a big one right in his belly every day in the hospital to stop blood clots. Crazy! I guess if it's happening to my husband I can handle anything.

      So glad to have you rooting for us!

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