Arghhh...I am getting my first PICC line on Thursday, May 10. I am stuck between being really scared and excited. That sounds very strange..huh.
I have done oral abx for about a year. I had a break from this past February till about a week ago when some symptoms return. LLMD thinks maybe IV will help kill whatever is left in my brain.
My main lingering symptoms are fatigue, vertigo, insomnia, and anxiety. I still have some vision problems, dull colors when outside and some headaches.
I am scared to get the PICC line and of whatever side effects come along with it. I am also doubting myself and my decision to go forth with this. On one hand I think it's great that I am finally getting the treatment I have fought for for 10 years. On the other hand I wonder if taking such a drastic measure is really neccasary. I know I am sounding silly and VERY whiney but I have such mixed emotions right now.
In the past I have taken Tetracycline, which made me have a nervous breakdown. Amoxcillian, which helped a bit. Zithromax with Flagyl..which is what I am still currently taking.
I will travel to NY on Thursday to get the PICC and then go down the road to my LLMD office for my first treatment. I will be getting 1 gram of Rocephron on the first few days and then increase to 2 grams a day. I will also continue with the Zithro, 250 mg a day. LLMD office also told me to follow a low fat diet for gall bladder and to continue with aciphod. They had other things they said we would discuss on Thursday.
Is it normal to be feeling this way now? I had an IND blot through Igenex and a positive Bartonella but whenever new treatments pop up I doubt myself and my decisions.
Sorry this is such a long pity party for myself but....that is where I am tonight.
kit
Posted by Boomerang (Member # 7979) on :
kit, guess you and my hubby can be picc buddies together. He is scheduled to get his next Friday, the 11th.
He's going to have Primaxin, 500 MG every 8 hours.
I sure hope it helps him.
I hope it's natural to be nervous, and also excited, kit. That is how we are feeling too.
Good luck!
Posted by kitkat32 (Member # 9682) on :
Thanks boomerang..it's nice to know that I am semi-normal.
Hopefully everything will go smoothly. I would like to give you some words of wisdom but sadly I don't have any...lol.
I will tell you about mine if you tell me about yours. I will probably be in lymechat on Saturday if you want to pop in.
kit
Posted by Boomerang (Member # 7979) on :
Yeah, hopefully we're all normal.
I've never joined the chat, but maybe i'll check it out.
Good Luck!
Posted by kitkat32 (Member # 9682) on :
Well, now I have done it.
I worked myself into such a ball of nerves that I just had my first big..overblown..panic attack in a long time.
I was typing a PM to someone when it hit. Didn't recognize the symptoms at first...thought I was dieing..again.
Phew..glad that ended. I hate that I do this to myself.
Gotta go slap some sense into myself...kit
Posted by Boomerang (Member # 7979) on :
Try not to think about it, kit. You're doing this for the best. You'll probably breeze through!
Good Luck!
Posted by kitkat32 (Member # 9682) on :
Thanks LymeED,
LLMD said that was crucial during this treatment. Yesterday they just mentioned the low fat diet but said we would get into more details next Thursday.
kit
Posted by CaliforniaLyme (Member # 7136) on :
Congratulations*)!)*! I hope IV does for you what it did for me*)!*)!*!!!!!!!!!!!!!!!!!!
Posted by heckyeah (Member # 603) on :
quote:Originally posted by kitkat32: Arghhh...I am getting my first PICC line on Thursday, May 10. I am stuck between being really scared and excited. That sounds very strange..huh.
Relax. The PICC line is really no big deal honestly. It takes a few days to adjust to having it but then you don't even notice it except when you're infusing.
Advice:
Don't lift anything heavier than a half gallon of milk with the arm. Lifting and/or repetitive movement will aggravate the vein and you'll get inflammation and possibly infection.
Drink a lot of water to keep the veins nice and big.
Follow guidelines for keeping it clean and dry. Watch if you have nurses do the dressing change... I've found many to be horrible in their technique. There should be a sterile field and nothing should contaminate it... nothing outside the field should enter and they should not touch anything outside the field and then touch the uncovered PICC on your arm. Speak up if they are being sloppy.
Ask the nurse (or whoever is changing your dressing) to blot the area so it's not too wet after they slather on the iodine. They should be using STERILE gauze to do this. Ask for this because if the skin is wet and then covered with the plastic stick on dressing, you could get a very bumpy itchy rash especially under the part of the tubing that is under the dressing. I did all the time if the area wasn't dry enough.
Cut your hubby's old tube socks. You need to the top elastic section. Use that over that section of your arm and tuck in the tubing when you're not infusing. Use 100% cotton socks in the summer. This is also a great way to get your husband to give up those hole filled socks! :-D
Jennifer
Posted by kitkat32 (Member # 9682) on :
Thankyou California Lyme!!! I hope I have success too. I happy to hear it worked for you. What kind of abx did you use?
Thanks for the advice Jennifer. I will watch the nurses carefully. I am compulsive about things being sterile so I am probably going to drive them nuts.
I will try the sock idea. I was wondering how I was going to comfortable cover it.
I am a little less anxious today. I decided to go and work in my flower gardens before I am not ablt to lift anything heavy. I am, of course, sprayed from head to toe with tick repellant.
kit
Posted by Cobweb (Member # 10053) on :
Hey Kitkat-just got a picc line today! Went to local hospital. Dr. inserted it, with two attendants, and a lot of high tech equipment.
I arrived at the hospital at 8AM, admitted as out patient in "interventional radiology", looked like an ER . I got a wrist band. Seems like three different nurses came to talk to me for info.
The doctor who was going to do the procedure came and described exactly what they were going to do-and added that they do about 10 a week-and so far have not had any problems.
I had to strip all clothes but undergarments and put on gown. I was wheeled down the hall to procedure room. Lots of high tech equipment.
Only thing that hurt at the time was the initial injection to numb the area. From then on I only felt pressure. I had a tournacat(sp), and they used a sonogram machine to find a good vein in my upper left arm.
Dr. talked step by step on what she was doing.
I got a little anxious a couple of times-they must have had my vitals somewhere, because each time I felt like I was going to faint, but didn't say anything, a nurse asked me if I was all right.
I was lying on a table, so I knew fainting would not be a problem, and the feeling passed quickly.There was a machine right over my chest that tracked the IV catheter.
I mentioned to EVERYONE I had a heart problem and that was my main concern.Ventricular Tachycardia, controlled by medecine since I wound up in ER a couple years ago and they had to stop my heart to restore normal heartbeat.
Dr. explained today that they placed the PICC close to my heart, but not close enough to trigger it. They showed me a picture of it when the procedure was over.
I got home about 11AM.(half hour drive).My 18 year old daughter went with me.(She was nice and solicitous at the hospital in front of the nurses, carrying my purse, participating is discharge discussion,drove home, etc-then as soon as we got home, she hopped out of the car , said-"well see ya-bye"-got in her car and drove off!)
Now my arm is sore and bruised-and I was told not to use my arm for 24 hours, and to keep it elevated.Nurse comes by tomorrow AM.I did an infusion as soon as I got home.
I had an LLMD appointment May 1st when decision to put in PICC was determined, so I only had to wait two days- it would have been harder to wait any longer.
Carol
Posted by lyme lady (Member # 11208) on :
I have had the Picc line in twice. It's not that bad. Does help.
Just alittle on the inconvient side at times.
Good luck with it! u will do just fine!
Posted by kitkat32 (Member # 9682) on :
Thank you Carol and lymelady,
I am feeling a little bit better about the procedure. I think it's the anticipation of it that is the worst.
I am also worried about scaring my chilren. My son is 10 and daughter is 4. I went over all of it with them tonight so they know what to expect.
I am glad your procedure went well Carol and you didn't experience any problems. It's good to hear something positive.
I am a little concerned over the numbing agent. I will have to remember to talk to them about that. Last time I had it in February for my eye lift surgery..drooping lid..it went my heart go a little hay wire. Doc said that it is normal to make your heart race a bit but I must have been overly sensitive to it.
Thank you again..and let me know how you are doing Carol.
kit
Posted by Cobweb (Member # 10053) on :
Hey Kit-wanted to tell you I'm doing great. Especially since the nurse came, changed the bandage and told me I didn't have to pull the sock up over the insertion site-it was putting pressure on the site which hurt.
I just need the sock to contain the tubing-keep it from dangling. Otherwise I can't even tell I have it. There's quite a bit of bruising, but it should resolve.
My teenagers may have been worried about risks-it didn't help that Grey's Anatomy last night had a woman die of sepsis after getting central line-but that's rare. I told them sepsis was not in my script, so not to worry. Today my girls just wanted me to show it off to their friends so they could watch them go "eeeuuuuw"
So thumbs up for now. Carol
Posted by stymielymie (Member # 10044) on :
MY GOD, CAROL ITS ABOUT TIME!!!!!!!!!!!!!!!!!
YOU COULD HAVE SAVED YOURSELF 2 MONTHS OF AGONY AND ESTACY .
NO VODKA IN THE PICC LINE.
READ MY POST ON THE CORRECT DRESSING AND MAKE SURE SHE IS DRESSING IT CORRECTLY.
DOCDAVE Posted by kitkat32 (Member # 9682) on :
Thanks Carol,
I am so glad to hear that your doing well with it. Isn't it nice our children like to show us off. LOL!!
I go on Thursday. Hubby has decided that we should go a day early and spend some time in NYC. I am looking forward to that. It's my early Mothers day present.
I will let you know how it goes. I am sure I will have many questions and concerns.
Thanks again, kit
Posted by Boomerang (Member # 7979) on :
Hey kit, how are you doing with your line?
We're doing okay here.....woohoo!
Posted by kitkat32 (Member # 9682) on :
That's wonderful news Boomerang!!
I PM'd you. I am hanging in here. Things aren't going as well as I hoped for but...I have been through worse and this too shall pass.
Tell your hubby I said he is sooo lucky to have you.
Have a great weekend.
kit
Posted by CaliforniaLyme (Member # 7136) on :
Hey Kit- I had 9 months Iv Rocephin- didn't kick in and start working until month 7 and from then on it was miracles every day!!*!)*!) Bestest wishes, Sarah
Posted by kitkat32 (Member # 9682) on :
Thank you Sarah,
I am feeling some improvements already. Hopefully they will continue. I don't know if I could take many months of having a PICC. It's only been over a week and I hate it already.
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