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Ended up with a heplock and a wonderful nurse who won't even have to come back if my IV line holds. It feels like a good one though, so that's hopeful. He taught my husband how to do the flushes and I have this tiny little portable pump so I'm in business! It's so nice to know I am getting the meds I need to feel better for another 4-6 months and I don't even have to leave home. 🙂
Way to go, Kat! I was stressing out for you, so what a relief to have things start out well……..whew!
You are a lucky girl, Kat! I travel two hours for the cath to be put in, and return in 3 days for a replacement. My husband does the infusions at home – he does a great job! We pay virtually nothing for the tx cause we do it ourselves! Hope you feel better soon!
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Lizz R/A 11/07, AP 5/07
Ok, I'm getting ready to start this at home as well. But, I'm curious, how often do you do this and how long does it last. And, do you have to have someone there to help you or can you do it by yourself?
Lizz, why do you have to travel 2 hours for the line? It's like $70 for an infusion company or home health care to come out and put the line in. They will come back if I need them but as long as the line is ok, we do not need them again for the full 5 days, I can even take out my own line.
Andrea, that is sort of an individual deal. Dr S recommends every 6 months, but that's because his patients travel to see he and most people would be hard pressed to go more than twice a year.
My first IVs, that I got in Ida Grove, lasted between 4-5 months before I felt like I wanted more. Ideally I would have had one IV a month (just one, not a series) but my health insurance and PCP wasn't cooperating last year. And now I think I like the idea of the 5 days worth at a time. So I am going to just wait until I feel like I need more and then ask my doc to write another script and will do it at home again.
You may never need more than the one series, some people do fine with just the one and then onto oral. Others need them off and on for several years and then others, anywhere inbetween. I was sick for a long time before getting a dx so I'm sort of figuring a few years of doing this before getting a remission. Hopefully sooner but I'd do it forever if I have to, to feel better. 🙂
Good luck with your home IVs and feel free to ask any questions or just gab about it. It truly helps to have others to share this with even if its just to hear yourself talk. :roll-laugh:
Thank you so much Kim, it helps to know that others are thinking about us as we go through this, especially these new experiences where we dont know what to expect.
Hey Kat, because there is no home infusion service in my area. I've gotten the hang of the routine, so it's no big deal. Be prepared for herxing when you're done. I was in alot of pain but after a few days it got better. I think Benedryl is good to take in this phase because for me it calmed the hypersensitive response my body was in. All the best to you!
Kat,
I am really proud of you!!! Hope your site will last for 10 IVs. Yes, it's a great feeling to do it from home. I felt like gaining some control over :roll-laugh: once I knew I did not have to go back to Iowa. Did Dr. S prescribe the med for you? He is really wonderful.
I pulled the IV needle out by myself. I would never suggest any one to do it…. the blood was gushed out like CSI movie. I would never do it again. :blush:
Cheers!
JB
Oh bummer about no home health near you. But if I was in that situation, I'd do the same as you and drive for the line! I don't really expect any herxing because I didnt herx at all last time. But I am always prepared for it. 🙂 I've really only herxed a few times, when I first started on orals way before my first IVs.
JB, yes, I will be pulling my own line as well. Sure wish I didnt know what happened to you when you did it! :roll-laugh:
No, Dr S did not prescribe it for me, he didnt need to. My rheum doc has always been willing to get me the IVs.
Finished my third IV this am, still doing really GREAT! I wrapped up my arm and took a bath, that felt good. The IV is still holding just fine and my wonderful nurse called to make sure I was doing ok. I already feel less pain and the bad fatigue hasnt hit yet, if I recall it hit about day 3 last time and only lasted a day.
For anyone wondering if doing this at home is the way to go I can only say that this is the BEST way, IMO. And, I don't know the final cost yet but it appears that it may also be way cheaper than I had thought too. Even if a person had to pay out of pocket, its much cheaper than the trip to Ida Grove.
How wonderful! Now are you doing 5 days twice a day or 10 days once a day?
I think they are setting me up for 10 days once a day to be easier on the stomach.
I can't wait!!!!
Andrea
Not so far. Last time, in Iowa, I had some diarrhea the day after I got home. I took flagyl for a few days and it cleared right up. It might have cleared up without it, but I didnt want to take any chances as I have had antibiotic associated diarrhea in the past and its not much fun.
Are you taking a good probiotic and/or eating yogurt? I am taking the probiotics but want to get to the store today to pick up some yogurt too.
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