Lyme Disease Support Group

I had my PICC line placed today and am having horrible pain in my arm/shoulder. Has anyone else experienced this? The techs at the hospital didn't inform me of the possibility of pain, or what to do about it.

I had a frightening experience during the procedure. I have a sensitivity to the epinephrine in Lidocaine, and I was forthright about this, but was told it was the only anesthetic available. So they used it, but I had a reaction, drop in BP and began passing out. This is a big deal because in addition to infections I have Addison's Disease and some other problems.

Once that fiasco was under control, the doctor accidentally pushed the guidewire for the catheter too far down into my heart and it triggered a long run of SVT arrhythmia (which I also have a history of, and informed them of this too). I kept telling them I was having bad palpitations, but they didn't have me hooked up to a HR monitor!!! When finally the tech hooked me up, he said it was SVT and had to tell the doctor to pull back on the guidewire. What a mess.

So I left feeling pretty bad for lots of reasons but now am just dealing with this whopper of a pain in my arm. I can't barely move it at all, and it hurts everywhere. Is this normal? Is there something I can do to help it?

Any recommendations on the best kind of cover to keep it dry?

Very, very nervous about my first Rocephin treatment tomorrow. I'm so afraid I'll have a weird reaction and they won't be prepared in my doctor's office.

Thanks again for your help!

Leigh

so sorry to read of all the pain and HORRIBLE side effects of things going wrong for you.

my gut reaction is to call the hospital er and talk to them about this. i reread your post and hospital tech put it in...they should be made aware of this in my non-medical opinion.

ive never had a picc so have no experience to give you any advise.

am disturbed you told them you react to that med; they gave it anyway to you. surely they must have an ALTERNATIVE thing they could give you.

up for more answers from picc users....

hope you can relax and sleep tonight. hugs

If you're having your first dose in the dr's office, they should be prepared for reactions. That's why they do it there! I had a couple of itchy bumps pop up when they sped up the drip near the end, so they had me go to the office for the 2nd infusion as well to make sure there were no problems. No issues after the 1st infusion, and now it's just part of the daily routine.

Do make sure your doc has prescribed an EpiPen for you just in case, and have that and the phone near you when you start doing infusions on your own in case you have a reaction later on. The little kit the IV supply company sent was pointless - a lot of small parts, little vials of medicine that would need to be pulled into a needle and injected - no way I would be able to do all that in the middle of an allergic reaction. The home nurse says that the first place you're likely to notice a severe reaction is in the throat, but any reaction is reportable to the doc, including itchy spots or rashes.

For showering, use the DryCorp PICC cover. You may need to cut it off top and bottom for a good fit, which they tell you how to do in the instructions. I was a baby about it for about 3 weeks, afraid that it would leak, and washed my hair in the kitchen sink and took sponge baths most of the time, until I finally decided to trust the cover thing. I still don't trust it completely and keep it out of the shower flow as much as I can, but I do take showers now instead of washing my hair in the sink. Others use a combination of tape/plastic/saran wrap/rubber bands, but I wasn't comfortable in my ability to get a watertight seal with all that, and I'm sensitive to tape. The doc who installed the PICC said that some will cut the bottom off a plastic freezer baggie, put that over the arm, then secure with plastic wrap and/or tape.

You should tell your doc about your experience with the PICC install. Seems he should consider having his patients go elsewhere? Mine sent me to a hospital that wasn't that close to home, but that has a procedure center that does mostly just PICC's and other types of lines all day long. I didn't get an inexperienced crew that way, and all went smoothly.

Today I had the first Rocephin treatment and everything was o.k. (what a relief!). I did tell the doc about what happened yesterday, and needless to say, he was quite interested!! The nurse that did the infusion also informed me that there should have been a cap on the end of my port, and the clamp should have been shut. Another 2 mistakes on the part of the techs yesterday. I just wrote a letter to send to the hospital, and I'll call tomorrow too.

I'll try the heating pad now. I'm still having so much pain. Advil isn't touching it, and I really don't want to take anything stronger. The nurse today told me it's normal to have pain for about a day after the PICC placement, but not usually any longer than that. My doc told me to call him Monday if things haven't improved significantly. There is no redness, swelling, or heat that I can tell. But it was definitely hard for the doc yesterday to get the catheter in - took a couple of tries and he was really rough about it.

I've had some horrendous hospital experiences over the last 3 years, but what happened yesterday ranks right up there in the top 5 or so for sure! So tired of dealing with this stuff, but I know I'm in good company here and don't mean to complain. Thank you again for your thoughts (and thanks too for the info on the DryCorp stuff - very helpful).

Take care,

Leigh

I don't remember the clamp being closed either though, and there was nothing over the end of the port. The in-home nurse took off the port and replaced it with an extender and a new port, so it reaches down to my hand when I extend it out. This makes it so I can easily do the infusions myself, and the IV service sends me a new port and extender every week.

The in-home nurse gave me an extender too, which makes things easier for sure. She told me to close the clamp after each treatment but she didn't give me a cap for the port.

Thanks again for your help with this.

Leigh

I noticed that you're on Rocephin 5 days/week. I think I'm supposed to have it every day??? (2g/day). I wonder if this is too much. I was going to ask my doc about adding Zithro to the regimen, anyway...maybe I should do 4 days on Rocephin and 3 on Zithro or something. What do you think?c

I do the blood type diet too (I'm type O). It's so interesting, because my GP ran a food sensitivity test on me last year, and the results lined up almost exactly with the blood type stuff (also I was off-the-charts for all preservatives, additives, caffeine, etc).

Thanks again. Hope you're doing well.

Leigh

I'm a B, so the food restrictions aren't so bad. Pretty much everyone agrees on gluten free for all lymies, and the B adds chicken to the no-no list. I don't do caffeine, so that's an easy one, and I check ingredients on everything I buy that is pre-made.

Even though I've just started the IV stuff, I think it will be difficult to tell the difference between a herx and my normal cycle of symptoms (mine are almost exactly 3 weeks each time...it's so weird).

My doc isn't super-aggressive either. He keeps reminding me to be patient! I just want to wipe the stuff out. But being methodical is the best thing for sure, especially when things are complicated.

Keep me posted about how things go on the new regimen, if you have time and feel like it...

Leigh

Some docs hit patients with everything all at once to see if they'lll tolerate it, others will take it a bit slower to see what happens. Mine wants to be able to differentiate between what works and what doesn't, so he won't add things too quickly. He did hand me a printout about IVIG helping neuro symptoms in late-lyme patients though, so he's considering that as a future option. He also has a hyperbaric practice, but hasn't mentioned that as a possible way to help yet.

I have added a few homeopathics on my own, including cell salts and a few others. Too early to know if they're helping or not.