I had a picc line inserted back on June 10th in order to get IV antibiotics to treat lyme disease which has gotten into my central nervous system.

Daily maintenance of the picc has involved flushing with both saline and heparin. I've never felt particularly well since getting the picc, but wrote it off to general lyme ick. I haven't been on the IV antibiotics since June 18th for various reasons and have been doing the saline/heparin flush ever since.

Back on Sunday (the 13th), I was starting my picc flush and suddely WHAM! - felt like someone hit me in the chest with a sledgehammer. Add lightheadedness, dizziness, faintness, chest pains, and shortness of breath. Yelled for hubby and he said I had turned bright red.

Got to the ER (after a sireny ambulance ride and a very strange conversation with the EMT). They ran blood tests, a head CT w/o contrast, EKGs, xray to make sure the picc was in place, gave me a massive shot of blood thinners, 3 hours later got a chest CT w/contrast to check for a clot.  The next day, I got a chemical-induced stress test and a cardiac ultrasound.

Nuthin. My tests were called "boringly normal" and "underwhelming".  While I was in there, I was still getting occasional chest pains, dizzy spells, and turning red. At one point my bp was 68/44 (took them 3 tries and 2 different machines before they accepted that it was really this low - I now realize this was probably from the nitro patch they had on me).

No clues, no answers, no suggestions. Still no nuthin. Was discharged with a recommendation to follow up with my PCP, and to see an ENT and get some Dramamine for my dizzy spells. Dramamine makes me dizzy - not going there. They couldn't explain what happened, why an inner ear problem could make me turn red, or why it would hit when I'm standing still and I'd be fine while moving, bending over, etc.

They were under strict orders from the ER doc not to touch the picc the entire time I was there. No flushes, no nuthin. So I sat there for 2 days without proper picc maintenance.

There's so much more to this adventure, but too much to go into here.

How do you get thrown out of a hospital? Walk up to the nurse's station and announce you want the picc flushed before you go home because if you're going to throw a clot it might as well be at the hospital since you're already there. 5 minutes later they flushed the picc and threw my discharge papers at me.

After several episodes of light headedness, dizziness, flushing, shortness of breath, and periodic chest pains since my release from the hospital, I called the IV nurse at the infusion company to ask about any possible side effects to either the saline or the heparin I've been taking.

She talked to their pharmacist. Turns out the heparin I've been using is made from pork. Guess who's allergic to pork? It would also explain why my symptoms didn't get any better in the hospital. While in the ER, they gave me a massive dose of the blood thinner Lovenox, which is also made from guess what?

So all this time, I've been injecting allergens directly into my blood stream. Nobody at either hospital (the one that did the insertion or the ER) OR either of the agencies (infusion company and home visiting nurse) OR anyone at my dr's office ever brought up possible allergies.

I'm lucky ending up in the ER and wasting 3 days was the worst that happened. Not trying to sound terribly dramatic here, but this could have killed me. Seriously.

I've since stopped using the heparin and am just doing flushes twice a day with saline.  They're sending a new kind of picc lock which doesn't require heparin, so I won't have to worry about clotting anymore.  

Geeze!

Things have been *ahem* interesting since the last time I posted.

Shortly after my last post, the left side of my face went completely numb and I started having chest pains.  Went to the ER, because neither is anything to mess with.  They ran an EKG, xrays to see if the picc had slipped out of place, a CT scan to see if I had a stroke, and an ultrasound of my neck to see if the picc was pressing on any vital structures.  Nuthin.  We figured it was all a reaction (a positive one, believe it or not) to the new med.

So we get back home, where my care package was waiting for me.  Oh Goodie!  A huge box of medical supplies.  Just what I always wanted!  :-P

Anyway, the nurse shows up shortly thereafter.  Didn't do a dressing change, in spite of the large amount of bloody seepage under the bandage.  Saved that for Friday.  

Thursday and Friday, I found myself in a world of hurt.  Not only did the bruises from the insertion decide to start popping up then (with a vengance - good thing I look good in red, purple, and blue) but apparently my reaction to the meds wasn't limited to what I'd mentioned previously.  Every joint in my body ached.  About a 7 on the pain scale.  The occasional tremor in my hands was worse than ever.  Also had a headache and felt like there were clamps on the backs of my eyes.  This was my first herx!

A herx, btw, is when bacteria die off in the body and release toxins into the bloodstream.  It's usually seen as a positive sign that the medication is working.  It manifests as an exponential increase in symptoms and lasts for a couple of days.

By Saturday, I was feeling considerably better.  Pain had died down, including the chest pain.  Had some residual eye pain, but it was bearable.  Tremor was gone.  Numbness was better.  Sunday and Monday were more of the same.  Had another dressing change which was not the most pleasant experience.  Had blood taken on Monday to check my CBC and liver levels.

Then yesterday, a few hours after I woke up, the left side of my face was numb again.  This time with slight drooping and the numbness extended to my neck, shoulder, upper chest, and upper arm.  The left side of my mouth didn't want to work and talking was kind of a challenge.  Hand tremors were back with a vengance.  My first thought was Bell's Palsy (which is common with Lyme), although if I had a brain in my head I'd have probably gone back to the ER to make sure it wasn't a stroke.  Hindsight and all that.

Called the dr's office and left a message wondering if it was an emergency or not.  Since I've been to the ER 3 times in the last 6 months and they haven't found anything, I just figured it was more of the same and decided to blow it off.

The drooping and most of the numbness resolved after a few hours.  Of course, by that time the dr's office decided to call me back.  We went through the symptoms of a stroke and figured it was just Bell's Palsy (although it still niggles in the back of my head that it might have been a TIA - blood clots are one of the possible complications of having a picc).  But anyway.....

Later that afternoon, the doctor calls me back.  They got the results of Monday's blood tests back.  My liver levels are high.  Really high.  While the med is doing some good on the bacterial front, it's doing bad things to my liver.  The high end of the range for AST levels is 50.  Mine was 154.  So I'm off the IV antibiotics for at least a week.  Have to start taking supplements to clean out and repair my liver now.  

So here I am.  Unmedicated and still have this "thing" in my arm.  Have to make a run to the health food store today to pick up the boatload of new supplements.  Have a dr's appt tomorrow.  Not really sure why at this point.  I don't really think we have anything new to go over.  Other than getting the latest copies of my test results, there's not much in it for me.  A 3-1/2 hour drive each way plus the out-of-pocket expense for gas, food, and the dr's appt (they don't take insurance) just doesn't seem to make it worth the effort.  Thinking I might call today and reschedule in a few week's time.

And in other news....
Today's the day the Pitts neuro panel is reviewing my case.  Seriously nervous about it.  Torn between hoping they'll find nothing and everything's the result of the lyme and between them actually finding something that explains what's been going on.  I should hear back from them sometime between this afternoon and Friday with their recommendations.

Keeping my fingers crossed, but not really sure why.

So here I am, up at 2:00.  At least I got close to 5 hours sleep and only woke up twice during that.  Here's the full version of yesterday's events...

We got out of here on time at 7am, just in time for rush hour traffic all the way up there.  The roads were horrible!  Between the traffic load, construction, and a bad accident on 287 (several people had a really bad day, fortunately they seemed to be ok), I didn't think we'd ever get there.  I'm, of course, freaking the entire trip (good thing I was driving so it kept me distracted).  Serious anxiety about the whole procedure, coupled with anxiety about being late.  We got there on time, in spite of everything.  

We get there, go to the wrong building, wander over to the right building, and then it begins.  Filled out a boatload of paperwork.  The nurses there were really nice and sticklers for keeping things sterile.  Didn't help with my weenieness at all tho.  I was skeered!  

First try, lotsa lidocaine and no go.  The catheter caught on something and crumpled.  They pulled it out and I peeked.  Bad move.  Second try, more lidocaine, no go.  Third try in different spot.  More lidocaine.  Still no go.  Fourth time in yet a different spot and an unbelievable amount of lidocaine.  And Voila!

It was the strangest sensation.  I could actually feel the catheter move inside my body as they pushed it along.  Not the most pleasant feeling in the world. *skeeve*

Then came the xray which we waited about an hour for.  That was ok.  Everything's where it's supposed to be.

Had to wait awhile longer for them to bring over the Rocephin drip.  That wasn't bad.  Only took 1/2 hour to do.  Instant post nasal drip tho.  Although, if that's the only side effect I get from it, I'll be happy.

No handout to take with me regarding care/precautions, but I got a pretty good verbal overview from the nurses.  No heavy lifting.  No repetitive movements.  No tennis (certain angles can snap the line).  Keep it dry and cover it during showers - that's going to be interesting.  Keep my fingers off of it.  No cat box duty (that's hubby's job now.  HA!).  Take it easy for a few days while my body adjusts.

Left the hospital at 2 and immediately started looking for somewhere to eat as neither of us had eaten before leaving the house that morning.  Got home around 6 after considerably more traffic, construction, tailgating, yelling at cars, etc.  Hubby was driving.

We finally get home, more or less in one piece.  Then the storms hit.  Thunder, lighting, high winds, huge amount of rain.  The electric went out sometime around 7:30.  Apparently, the whole area was out.  With no idiot box to entertain me and being exhausted, I went to bed around 8:30ish.  The electric came on around 1ish this morning, which woke me up.  Glad for it tho.  Would be at a real loss with no computer, lights, or coffee at this hour of the morning.

Really don't have an idea how many holes they put in me yesterday.  I can see 5, but the dressing covers a bunch more.  Really sore and bruised.  The underside of my arm feels swollen.  Shoulder's sore.  In spite of the heat, I put a hot pack on it last night and it feels somewhat better.  Something of a learning experience to try to sleep with this thing tho.  I can feel the dressing pull at certain angles and, of course, that wakes me up.  I'm still somewhat paranoid about doing damage to it.  Hope that passes soon.

So here I am.  Piccled.

The care package with my supplies is supposed to show up today.  Visiting nurse is supposed to show up today too.  With any luck, the package will get here before the nurse does.  Getting the dressing changed and she's showing me how to do the infusions.  This otta be fun.

Hopefully, this new antibiotic will help deal with what's been going on in my brain.  Btw, if you haven't read my posts before, I have what's called neuroborelliosis, which is basically lyme disease that has gone into the central nervous system.  Peripheral neuropathy (tingling, buzzing, pinpricks, etc), serious brain fog, seizures, tremors, etc.  It's not fun.  The lyme has also seriously screwed up my endocrine system (including thyroid, which is why I'm here), gotten into my joints, and is doing nasty things to my GI system as well.  I'm also being treated for babesia and bartonella, which are also transmitted by tick bites.

Will be adding a photo of my new appliance once I figure out how to work the camera on the cellphone.

Thursday:
I just sent the following fax to the lyme doc's office, because they closed at 4:30 today. *grumblemutter*

Names have been changed to protect the inept.

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To: Anyone at Dr H's office who will call me back on Friday (6/6/08), preferably in the morning.

Our saga so far…..

Tuesday, I get a call from L at CSA:
1. They're going to be handling my home care IV stuff.
2. The insertion was going to be done up in the Dr's office where I'd also be receiving my first dose of IV abx.

Wednesday, I get calls from both D and K at HCS saying:
1. They're going to be handling my home care
2. The insertion is going to be done at a hospital, just needed to hear from you guys to find out which one
3. They had gotten approval from the ins company for 4 weeks of IV Rocephin
4. They had no idea CSA was involved.

Today (Thursday), I get another call from L at CSA, saying:
1. The picc is now going to be inserted in my home?!?!?!?!
2. They're still waiting for approval from the ins company
3. They're going to be taking care of my home care
4. The other agency isn't going to be handling my case

I was so upset at hearing a 3rd different story in as many days, I had to hang up because I was crying so hard - purely out of frustration and anger.

Would someone please call me and tell me what the *expletive deleted* is really going on here????? Can I get a straight answer from someone? Anyone?

Thanks.
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Yeah, I'm seriously POed. Btw, I actually typed in *expletive deleted*, rather than swearing at them.

It's a good thing the office is 4 hours away or I'd be camping on their doorstep in the morning.