posted
I'm not sure if I should post here or in General Support, so if I'm in the wrong place, please let me know.
I'm finally getting the PICC Line on Thursday after waiting almost four months. I am so sick I can hardly stand it. I feel like I'm dying, and wish I could just get it over with if I am.
I can't tolerate oral antibiotics, and it seems the PICC Line is my only recourse, so I'm resigned to having it done. I'm also praying like crazy I'll finally start getting some relief.
The inside of my nose is so swollen and inflamed it hurts to breath. I can't get myself moving to do anything. Migrating muscle and joint pain is making me crazy, etc., etc., etc.
But I am so TERRIFIED of doing this. I'm scared of more pain. I am so raw. I had two other procedures years ago that were only supposed to cause "a little pressure", and the pain was horrific! I had a nightmare the other night about getting the PICC Line, and I keep going back and forth between thinking I'm doing the right thing, and thinking I'm only going to cause myself more pain.
And sometimes, I go half mad thinking this disease can't be real. This can't really be happening. What if I'm somehow making myself sick? What if it's all trauma induced, as one non LLMD suggested?
The symptoms come and go, and are so varied I feel like I might really lose my mind!
I'm almost completely non-functioning. I don't have much of an appetite and no energy to prepare healthy foods. Maybe this is really all my fault. If only I'd taken better care of myself, i wouldn't have gotten so sick!
I had to defend myself to my brother the other day. He thinks if I'd just eat right and exercise, I'd feel better. He thinks getting the PICC Line is drastic and unneccessary. He means well, and he's worried about me.
I'm worried about me too. Am I doing the right thing?
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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posted
Needing Hope...I haven't had to have a PICC Line but I know the fear of having the disease?? When I started questioning in my mind if I really have it..I just remember how bad it was before & that I am better now. Seems kind of silly that we're bad, get worse with treatment killing the little buggers then finally start getting better!!! I hope the better gets here soon for you...Just remember that you are where we've all been before getting better ((HUGS))
Posts: 75 | From Missouri | Registered: Apr 2009
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I know new treatments can cause anxiety and fear , but just know every new road brings us to a place of healing .
Posts: 198 | From Rhode Island | Registered: Sep 2010
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posted
Needing Hope...if this is what your LLMD says you need to do and
orals have not helped so far... why not try it ?...in many cases
it is the IV dosing that works ! I understand your fears...perhaps
they can give a local aneasthetic while inserting so you won't have
the pain to be afraid of ? I don't know if that is a possibility but
it may be worth asking about...you will get better...you
will...think positive and be brave and know we are all routing for
you here
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yes, they do use local anesthetic for PICC insertion. The insertion of the line itself really doesn't hurt. I've had a PICC since 2008 and have had very little trouble with it. Replacement of the line (in the same location) several times has not hurt either - and I'm a wimp when it comes to stuff like this.
You can also ask for some Ativan or something to take an hour or so before you go in for the PICC placement to help you stay relaxed.
I say go for it - your symptoms (the constant changing/wandering pain/anxiety) are most likely caused by the Lyme/coinfections and are being stirred up right now because of the anxiety. Treating the Lyme/coinfections is the only way I know of to get past this place where you are right now.
One alternative to a PICC I will mention here is you can opt to try IM injections of Bicillin or Rocephin and see if those help without bothering your stomach. But I do not know how the IM injections compare in terms of effectiveness vs. the IV versions of medications for Lyme/coinfections...
Please discuss all of this with your doctor. S/He needs to know what you are experiencing and if they are really worth their stuff, they will help you get through this.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
You can find more info on how to live with the PICC and some tips for when you get it put in here: http://InfusingForLymies.comPosts: 40 | From USA | Registered: Jan 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son has had 4 PICC's (unusual issues) put in and without any trouble. He is on the road to recovery due to a lot of things, one being IV antibiotics. I think with Lyme, the anxiety is playing a part in your worries. Will your insurance cover being put out? My sister who faints at everything, did fine having her PICC put in. I wish you well!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
It tends to be the easiest when a radiologist puts it in. But others can apparently do it as well. I have very hard to find veins and the nurse who had done a lot of them could not place a PICC for me. That was why I went with the upgrade. And it was not difficult even for someone who is totally medical procedure phobic.
Best of luck.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I've had three and really the procedure does not hurt. I also had them put in at the hospital.
A little discomfort maybe the first night but soon you won't realize it's there.
IV was the only way I got better-I'm still in treatment but on orals now-had lyme, bart ,babs, etc. for 20 some years
Hugs and Prayers
Posts: 298 | From usa | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Try not to worry. The placement is not painful. They numb the site with lidocaine and then all you feel is a tugging sensation as they put it in. A specially trained nurse placed mine using ultrasound guidance.
Your arm may be achy so plan to baby it for a few days after the procedure. Warm compresses and ibuprofen will help. I also liked to sleep with a small squishy pillow so that I didn't accidentally lay on my PICC line arm at night.
Order a waterproof PICC line cover. With it you will be able to shower and bathe as usual. I like the one by drypro, it is made well and will last you a good long while even with daily use. Their customer service is also excellent. I called and they helped me order the right size, very friendly.
posted
My LLMD actually sends his patients to CT to have them put in by a specialist who uses a quick general anesthetic for picc and port line insertion.
He said this helps when people have smaller veins and more difficulty and they can ensure it is placed correctly so no issues after. I guess he knows mnay of us are squeamish and dont need the added anxiety.
I have not had my picc line yet since we are fighting insurance issues but a hospital with a radiologist is the way to go if you feel frightened.
I too, am like you, in thinking that I am mkaing this whole lyme thing up in my head. I have been negative with only a few IND an positive bands on western and a good CD 57 of 185. I question the diagnosis when others question me about it. But then I take a new oral abx like rifampin and have such a horrible herx after only 2 pills that I have to believe there is something there..why else would this happen.
I know its hard to accept. One minute we think yes its lyme, the next we say no way!! I know I convince myslef that all I need to do is eat right and get out again and I will be fine. I listen too much to what others tell me to do.
Instead we need to do what our own mind tells us what is right. You know you feel too ill to cook a good dinner and so do I...so there is something wrong.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Thank you so much for all your prayers and encouragement. The pain this stupid disease has caused me has made me terrified of any more pain. Not to mention, I have never been a very calm patient when it comes to medical procedures. If they were goinng to knock me out, I wouldn't be half as scared. I just don't want any more PAIN. I keep picturing myself, lying on the table, crying out in agony while they tell me, "It shouldn't hurt that bad" or "It'll be over soon" or "Try to relax" or any of the other riciculous things they say to make you feel like you're a big baby. Been there, done that, and don't want to do it again.
I ended up in the ER Saturday with the worst headache I've ever had. They diagnosed me with a Tension Headache. THe Dr. was very kind, and asked me if I'm under any stress lately. "Hmmmm. Who? Me? Nah!"
quote:Originally posted by annier1071: I too, am like you, in thinking that I am mkaing this whole lyme thing up in my head. I have been negative with only a few IND an positive bands on western and a good CD 57 of 185. I question the diagnosis when others question me about it. But then I take a new oral abx like rifampin and have such a horrible herx after only 2 pills that I have to believe there is something there..why else would this happen.
I know its hard to accept. One minute we think yes its lyme, the next we say no way!! I know I convince myslef that all I need to do is eat right and get out again and I will be fine. I listen too much to what others tell me to do.
This is my biggest battle. I am NOT CDC Positive, and my CD 57 is nice and high. I guess I just wish there was a more proof positive test to say, "YES! IT IS THERE!" I read an article about Lyme that started something like "It sounds like something out of a science fiction movie..." This disease makes doubt my sanity. And so, makes me wonder, is this REALLY Lyme?
I've done Oral Antibiotics, and can't identify ever having a herx. The first month, I was wiped out. The next month, I had chills and flu-like symptoms once or twice, but mostly, I have no stamina at all anymore. Can't even work. I've been told that could just be a side effect of the antibiotics. So, then I wonder, is it really Lyme.
If only I could know for sure that's the monster who torments me.
I know all about the unreliability of the tests. I know about the systemic symptoms that can change from minute to minute. I know alot about Lyme Disease, and as long as I was just dealing with it, I could accept it. Facing a scary procedure, months of antibiotics that could cause all kinds of problems, some foreign object in my body ... suddenly, I feel like I don't know anything at all.
Except fear. That I now know way too well.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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posted
I got the PICC placed almost two months back now. The job was done in 15 minutes or so. I received the first dose of IV abx, and drove back to the office.
In retrospect, the arm was a little tender for a week. But I have kept it clean, and the hole has healed.
The process is simple - I infused on the road to a meeting last afternoon. (When people dump the remnants of IV drugs in a garbage can in a Target parking lot, it is not often spent Rochephin balls.)
IV has been good to me, but it has been slow improvement. It sounds like you could use some improvement too. For me, the alternative to treatment was scarier than the treatment.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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posted
Thank you so much for all the prayers and encouragement. During the procedure, I kept praying and thinking back to all I've read here and how much help it has been to so many.
The procedure didn't hurt too badly. The initial stick and the first moments were pretty painful, but before i knew it, they were telling me I was done. The crazy thing is, the stupid auto blood-pressure cuff hurt worse!
It's been 5 days, and my arm is still a little sore. My shoulder is really painful though. There's a sharp pinching pain. And my heart beats funny when I lay on either side. It's very uncomfortable. Are these things normal?
Also, I've already had two days where I felt good!!!!! It's the first time in months I've felt good, and actually wanted to do something. Today, I'm in a lot of pain and really tired, but I know it's my own fault for pushing my luck yesterday, but it felt so good to finally feel human again!
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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quote:Originally posted by Needing Hope: It's been 5 days, and my arm is still a little sore. My shoulder is really painful though. There's a sharp pinching pain. And my heart beats funny when I lay on either side. It's very uncomfortable. Are these things normal?
I had my first dressing change yesterday, and I woke up in the middle of the night feeling like my arm is on fire. It's better now because I elevated it, but even an ice pack last night didn't help.
It doesn't look swollen or red, it just burns. The funny thing is that it's burning below the insertion site and along side the line, not really right where the line is.
Any suggestions? It really hurts.
Thanks.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Please call your home care nurse. I don't think it's normal to be having so much pain. If the nurse cannot come out to see you then you may need to go to the ER to have it evaluated.
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi,
I had my Hickman Line placed on May 9th... so 18 days ago and I'm still tender and oh soo itchy! The area itches like the dickens I just want to pull the darn thing out. I think everyone heals differently even for myself I don't heal the same as I did BEFORE Lyme.
But here I am 18 days post surgery and still struggling. I went to the Dr. once, Radiology once, and ER TWICE, and had different people looked at it, poked at it and changed the dressing. I had CT Scan, ultrasound and tons of blood work and everything came back normal. I even had hematomas the size of a silver dollars. But they just chalked it all up to my slow healing process.
So while it's only slightly tender it is soo itchy I can't stand it. I want to take off the dressing and scratch soo badly!! At least now the opening stopped oozing. It looks clean and not infected but boy did it hurt for 2 weeks!! Hang in there... our bodies are under attack and so even simple procedures are taking forever to heal.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Thanks for the hugs sammy. After speaking with my case manager at the infusion supply company, she sent me to the er, expecting a blood clot to be the culprit.
Turns out that the stat lock had been improperly placed when the home health care nurse changed the dressing. It was digging into the wound in one place, and was pressed so tight into my skin that it was cutting off the circulation and irritating the bruises underneath. Within minutes of having the statlock removed, the pain eased.
Scorpiogirl, I'm so sorry to hear you're itching so badly. Itching can drive you insane! I broke out from the extension, and I read on the forums here somewhere that someone used Benadryl ointment very carefully around the dressing when she had itching. I've also been told that there are cloth dressings that can be used for people who are allergic to the regular covers. I hope you feel better.
My shoulder pain did finally go away, and I am finally used to this new "appendage". It's taken three weeks for it to stop hurting completely and for me to get comfortable with it.
The biggest problem I'm having these days is showering! The cover they sent me covered even my hand and made it very difficult to wash my hair. We're using Glad Press and Seal and tape right now, but my husband wraps it so tight it hurts. Plus, peeling the tape and Press and Seal off my skin is very painful, and the whole thing is such a production! How has everyone else dealt with covering their PICC Lines for showering?
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
NeedingHope, I'm glad to hear that you are doing all right now.
Check out drypro.com, they have a PICC line cover that works great. With it, I can shower normally and not worry about water getting to the dressing. They are durable and last many months. You may need help putting it on at first but after awhile you will get used to it and be able to do it yourself.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Needing hope - here's what we do for showers, since my kid's skin is very sensitive (and pulling off the press-n-seal hurts him.
We wrap picc (and extension if you have one) in an ace bandage. Then use regular saran wrap to cover (or possible press/seal). we use a couple rubber bands at top/bottom to reduce drainage.
The ace usually gets a bit wet, but protects the area from major drippage.
Personally, I try to keep the arm level in shower and do most of it one-handed (while wrapped of course).
The device the infusion company sent was kind of silly (a large arm length plastic bag with a neoprene wrap for the top).
I'm so glad it all went well! racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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Sammy, I tried the drypro website, but it keeps coming up as site unavaialable.
Thanks for the suggestion racer. The device you got sounds like what I was sent. We've been using the neoprene wrap and it is disintegrating.
Think I'll give the rubber bands a shot.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I had a picc for 5 months and had absolutely no problem with it. Just be watchful for redness/infection. Otherwise, super safe. I had mine replaced twice in the same spot. NO pain during insertion, but my arm was really bruised afterwards. Some ibuprofen and I was good to go.
Best wishes...
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
I've had the PICC since May of last year (16 months). It's kind of a pain when it comes to showering, but I did finally manage to get a dry pro sleeve. It's wonderful! I can finally take a shower or bath (as long as I don't submerge it) whenever I want instead of having to wait for my husband to wrap me up. Plus, it doesn't cause any pain (which everything else we tried to do did).
I no longer feel like I'm dying, thank God! I still can't work because of severe joint and muscle pain, and low energy, but at least I feel better overall.
The whole idea of the PICC line was terrifying, but it really did make a big difference. I'm glad I finally did it!
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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I'm awaiting my picc line and I have read this thread and all you have battled! You're most recent post is so encouraging! So thrilled to read you are improving! That's so awesome! What IV meds are you on? Have you had to change IV meds? My LLMD is wanting me to start with Claforan. And I'm going to research your dry pro sleeve!
Thanks so much for sharing your story! It's filled with hope! Yay!!!
-------------------- Take your life back! Posts: 17 | From Southern Part of N. America | Registered: Sep 2012
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posted
I chuckled when I read your post KHenkel. You found my post encouraging, but I"ve been so discouraged lately.
I've been doing IV Ceftriaxone. We can't afford any of the others, and now, probably can't afford the Ceftriaxone any more eitehr.
The dry pro sleeve is definately the best thing we found! The website on the package is www.DryCorp.com.
Good luck!
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son did 9 months of IV antibiotics and went from bedbound to back to school. I would do it again but for longer. Don't be too quick to get off of it.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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It's the first time in months I've felt good, and actually wanted to do something. Today, I'm in a lot of pain and really tired, but I know it's my own fault for pushing my luck yesterday, but it felt so good to finally feel human again!
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