03-02-2015, 12:58 PM   #1
OldCrone's Avatar
Join Date: Dec 2014
Location: Portland, Oregon
Just want to rant

Look, I'm feeling overall much better and my symptoms have decreased so much there are weeks where I feel almost normal! So, I'm grateful for Remicade and it has helped bunches, but there are a few things and I just want to rant.

Beginning of rant:

My doctor's office wasn't able to find a vein for the infusion so I started with Good Samaritan Day Treatment in Portland. They could usually find a vein after the second or third stick, and someone sent me some heparin cream from a Russian pharmacy so the bruises are usually gone after a few days instead of leaving me black and blue for two weeks.

And Good Sam did nice stuff, like having a private room so you could zone out on TV, and covering you with a warm blanket, and having a volunteer come by and offer you a drink or some lunch. This is silly, but I would schedule my treatments on a Friday so I could get a bowl of clam chowder, a guilty pleasure for me that made it all sort of a reward instead of a punishment. You go in for a treatment and they nourish you. It was sweet. It made me feel valued.

Then Oregon Health Sciences University (OHSU) took over Day Treatment. They expanded the unit and remodeled and took out all the private spaces. It's like a factory now, with chairs close to chairs and everybody seeing each other's ports and tubing. And no more volunteers. And no more lunch. And no more blankets. And no more drinks, though there is a station where it looks like you could get up and go get something if you knew how to disconnect the IV tubing so you could get up--I'm not even sure if that's for patients or staff.

And now, they have stopped drawing labs when I go in for my infusion. So, instead of sparing me another traumatic event (although some of the lab techs do get me on the first stick. Wish they could insert the IV before I go down to Day Treatment.) they have informed me they are not a lab and will not draw blood before my IV infusion.

So, Okay. I go because I need the Remicade and it has helped me in so many ways. I bring my own blanket and try to remember to bring a sandwich or a bottle of water. I asked my doctor for Xanax to take before the needlefest. And I just try to get through it, because, there are worse things than being cold, hungry, thirsty, and bruised, and I know that.

But I still feel bad about it and wish there were another place in Portland to get a Remicade infusion. And I secretly hope for antibodies so I can switch medication to something I can inject myself.

End of Rant. Hope everyone has a good week, with few or even no symptoms!
03-02-2015, 03:07 PM   #2
Senior Member
FrozenGirl's Avatar
Aww that does suck. I know what you mean. My infusion place has snacks and a keurig and drinks for patients plus a tv with Netflix and wifi. I went to the hospital for iron infusions (6 hours ugh) and they had nothing, no wifi, tv, food was hospital sandwiches with tiny juice cups. I know I am spoiled but it was still a little disappointing.

I'm also not a great vein person. Usually my infusion nurses can get it within 2 and he hospital nurses got a vein but it was painful and left huge bruises for weeks.

I think we deserve to be a little spoiled sometimes, we are stuck with a chronic disease we need one or two nice things to make it easier.
Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
03-04-2015, 04:38 PM   #3
OldCrone's Avatar
Join Date: Dec 2014
Location: Portland, Oregon
Thank you. I'm better today. Just needed a bit of Oh, Poor Me! time.

Be well, all.
03-05-2015, 01:04 PM   #4
Senior Member
EvieBaby's Avatar
Join Date: Mar 2013
Location: Bolton, United Kingdom

My Support Groups:
When I go for mine we get shoved in a tiny room with 4 chairs, no TV, no WiFi, no magazines.. Its pretty bleak. When I went for my first infusion I wasn't prepared and I was so bored!! Now I take my kindle and some fruit and just get as comfy as I can. I get offered a cup of tea but that's about it.
03-05-2015, 01:14 PM   #5
OldCrone's Avatar
Join Date: Dec 2014
Location: Portland, Oregon
I certainly would treat someone who brought in $7,000 to my business a bit less shabbily!

I know it's a small inconvenience in a world of bigger traumas, but going in for an infusion is the reminder that I've lost control of my body and that I am seriously ill and that am dependent on others to get me through. I'm used to being ill and trying to protect myself from getting worse, but going in to the Day Treatment Center is a harsh reminder of what I've lost by being ill.
03-22-2015, 07:48 PM   #6
Join Date: Feb 2015
First remicade treatment coming soon. I'll try to bring something to occupy 3 hours, didn't know it was that long. Apparently I'll be going to the cancer treatment infusion center so Im hopeful it will be decently equipped. My veins stand out in my arms, so I shouldn't have that issue.

I'll jump in on a rant, my tuberculosis blood test was inconclusive, so I got a negative skin test, I was directed to an infectious disease doc, took 4 weeks to get into to see her. Went to the appt, she said hello, read my charts and said "you don't have tuberculosis, is there anything else". What the hell, 4 weeks for that. I proceed to stay and ask every question I had about internal tuberculosis, testing protocol, and differentiating internal tuberculosis from crohns. Got my moneys worth out of my $100+ office visit.

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