Off Remicade 5 months, now it's just sitting in the frig :(

[SarahAnne]

My last dose of Remicade was in August 2012.

It's been a mess of switching doctors, but I thought I was finally done. My GI was working with a home health agency to have a nurse come out to do my infusions at home. I was approved for the Remistart program and the nurse came out yesterday with my remicade.

I had warned her on the phone that I was a hard stick. She tried the first time in my hand and started to dig for the vein. I don't usually make a sound, but she had me squirming and sucking in my breath. She tried 4 times and nothing. She left, after leaving a message with my doctors office. She said I was the best candidate for an Infusaport she's ever seen.

It was only yesterday, I haven't heard from her or the doctor's office yet. I have an appointment on Feb. 5. I'm guessing I'll probably be having a port put in.

I am so desperate just to get back on my medicine. I'm freaking out, I've been sicker off of the remicade than I was when I was on it. I just got over pneumonia, and I've had 2 stomach viruses that landed me in the ER for dehydration. I'm technically in remission, but I'm still constantly sick.

Sorry for rambling, just feeling so out of control right now. :frown:

 

[AlliRuns]

Did she try a butterfly needle? My infusion nurse couldn't get the IV in my hand, I had in on the inside of my elbow, not the greatest place for an IV but it works.

 

[afidz]

I am a hard stick as well, I always end up with a pic line when I am in the hospital. Hopefully your doctor gets back to you soon, have you tried calling them? This may sound weird, but it may an option until you can get the port. there is large veins in kind of between or armpits and chest, and it doesn't hurt because it is generally a fatty area. These veins are easier to start an IV on because they usually have not been stuck before. I don't know where they generally like to do a remicade infusion from, but hey, who knows it might work

 

[Jennifer]

One nurse that can't find the vein and suddenly you need a port? I mean ya they do help with not needing to be stuck so much but an experienced nurse should have been able to get an IV in. I've had IVs in my hand, wrist and on the inside of my elbow, in both arms (not all at the same time, that's just silly ). That's 6 spots the nurse could have tried and she quit after 4. For shame. Are you able to go in office for now until they find a nurse who knows how to put an IV in? They also have to use a butterfly needle on me as apparently I'm difficult and have "tough skin." I'm part elephant, I thought you knew. :/

Keep us posted on what's going on. Hopefully you can get it soon. That nurse should at least come back and try again. Have you drink lots of water and she can put a warm compress on where she wants to stick you to get your veins to pop up.

 

[SarahAnne]

It wasn't the nurse, I am definitely the problem

My veins have always been small and thready, they blow or disappear. Last few times in the ER have been terrible, I had a stomach virus and went in b/c I was so dehydrated. I lost count how many times then they stuck me, one tech on each side. They finally put it in my jugular, which freaked me out.

The home health nurse tried a butterfly, she even tried floating one in. I usually end up with a picc line if I'm admitted into the hospital, a regular line won't last long in me before my vein blows. I guess I kind of suspected I would end up with one eventually. I'm kind of nervous about it, I don't know what to expect.

I'm really just disappointed, I wish my stupid veins could have cooperated at least this one last time so I could get my first dose of remicade. I'm going to call my GI's office today since I didn't hear from anyone yesterday. It's just so frustrating. I can't help how terrible my veins are, and yet I felt like apologizing to the nurse for wasting her time driving out there.

I've about had it with everything. I feel like every time I make any progress with anything, I turn around and run face first into another brick wall.

 

[SarahAnne]

The nurse wasn't being mean or anything like that. It actually seemed like she felt sorry for me. She told me that she used to work in a cardiac cath lab and I was the best candidate for a port she had ever seen.

And she really took her time. She stuck me four times over a 30 minute period. She would look on one arm for like 10 minutes, then go to the other one. I feel like a freak!

 

[Jennifer]

You're not a freak at all. I had a central IV in my chest when I was a kid for a year. Was a really easy operation and I didn't have any complications with it. Whether you get a port, picc, or whatever, I'm sure you'll be fine. Having your vein blow during an infusion wouldn't be good so if its something you have to do then we're here for you to answer any questions along the way or if you just want someone to talk to.

 

[bobf]

My last dose of Remicade was in August 2012.

It's been a mess of switching doctors, but I thought I was finally done. My GI was working with a home health agency to have a nurse come out to do my infusions at home. I was approved for the Remistart program and the nurse came out yesterday with my remicade.

I had warned her on the phone that I was a hard stick. She tried the first time in my hand and started to dig for the vein. I don't usually make a sound, but she had me squirming and sucking in my breath. She tried 4 times and nothing. She left, after leaving a message with my doctors office. She said I was the best candidate for an Infusaport she's ever seen.

It was only yesterday, I haven't heard from her or the doctor's office yet. I have an appointment on Feb. 5. I'm guessing I'll probably be having a port put in.

I am so desperate just to get back on my medicine. I'm freaking out, I've been sicker off of the remicade than I was when I was on it. I just got over pneumonia, and I've had 2 stomach viruses that landed me in the ER for dehydration. I'm technically in remission, but I'm still constantly sick.

Sorry for rambling, just feeling so out of control right now. :frown:

Hi sorry to hear about your trouble. It helps to talk out loud. I had the same problem and one appointment the nurse tried 16 times to get a vein before they finally got it. Since then, the night before my last three appointments, I put heating pads on my arms, drank lots of water and gatorade and then on the way to the infusion I put a rice bad on my arm. After doing that, they have been able to get it in one try. I have thought about a port too but decided to try everything else first. Good Luck to you and hang in there.