Tracy9
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Member # 7521
posted
I'm having a mini pity party. I'd invite you to join but then it wouldnt' be quite as pitiful. I'm planning a little retreat to my walk in closet where I can shut myself in and hide and have a good cry, just waiting for the tears to come.
I got my first PICC line today. It hurt waaaaay more than everyone said it would. I was at the hospital for 7 hours. It really hurts. It aches from the insertion site right into my heart. I don't like it.
My arm hurts if I move it at all, especially in my shoulder and clavicle area. The whole line area aches.
OK, that's all. I have been trying to get IV antibiotics for 7 months so I know I don't deserve a pity party, that's why I'm keeping it to a mini pity.
After I manage to get my cry on, I'll be all better.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Vermont_Lymie
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Member # 9780
posted
Feel better! Just think how great it will be to get those IV abx! I really mean that -- it can be the most effective treatment for folks like us...well worth the battle.
I hope the pain goes away quickly and hopefully soon you will not feel the line. Posts: 2557 | From home | Registered: Aug 2006
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posted
Hi Tracy, I had my picc line put in about a week and a half ago, and I totally agree with you. My arm hurt/ached/bugged for about three days. People were saying "cake walk" "easy shmeasy" etc., mine hurt.
I can tell you honestly now, it does not hurt at all. I think maybe we are just more pain sensitive having lyme. Take some pain meds if you have them, and I promise in a couple of days it won't hurt. I hear you sister. Amy
Posts: 374 | From United States | Registered: Nov 2008
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Tracy9
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posted
Thanks so much guys!
Amy, that is just what I needed to hear; that this is normal and it goes away. Phew, thank you...you have put my mind at ease.
I have ice packs now from my elbow to my chest and they are helping. I took a Vicodin when I first got home which helped minimally, but I think shortly I'll take another.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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joalo
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posted
I'm sorry you're in pain but i would like to come to your party. Just know you are not alone and that we care.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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feelfit
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Member # 12770
posted
Tracy,
Mine only hurt in the bicep area. Hot/warm compresses were recommended by HOme Health Nurse and helped a lot. It took about three days to feel normal.
Sometimes when I bent over I could feel the line in my clavicle and neck area.
Good luck, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
OOHHH Tracy !!!! I hope you get used to it just like new earrings...or a LOOOONG piercing devise,,,I don;t know..but I know you will get use to it!!!!HUGS~!!!
Posts: 983 | From The sky | Registered: Feb 2005
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In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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TerryK
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posted
I feel for you sweetie.
I'll be working on trying to get IV approved by my insurance company or figuring out how to pay for it soon.
Not looking forward to it but I know it is needed for some of us and I feel grateful that I may have the opportunity to get well, even if it is via IV.
I look forward to hearing that you are feeling better very soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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charlie
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Member # 25
posted
Aw Tracy, sorry. That's an invasive procedure and it's bound to hurt some. Hopefully it won't hurt but a day or so...from what everybody's told me you soon get over the feeling of having a foreign object in there.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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posted
I'm so sorry to hear that you had a rough time today!
I've done what feelfit suggested above and it helped. my current line is the second in the same arm and it is sensitive, wouldn't call it painful. much more sot than the first 2. I sorta used to it.
I hope you feel better soon!
Posts: 47 | From morgantown, wv | Registered: Feb 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tracy,
I'm so sorry you are going through this. I can't speak about PICC lines first hand since I have a port, but I will say that this disease makes us worthy of a pity party every now and then.
I know that a good cry will often help get frustration out of your system and is very cleansing, so cry away.
I've also decided that at my own pity pot parties, I need to have all sorts of pretty color paints to paint my pity pot in some of the most beautiful colors.
I'd be more than happy to share some great colors with you so we can pity pot together and then hopefully suck it up and move on. Been there MANY TIMES, so I do understand. HONEST!!!!!!
Hang in there Tracy and if it continues to cause trouble, please don't be hesitant about talking to the doctor about it. Perhaps (Lord forbid) they may need to redo it if it's causing too much pain.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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AZURE WISH
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Member # 804
posted
(((Tracy)))
I was told that sometimes the vein inflames (from having something shoved into it).
cactus
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Member # 7347
posted
Getting a picc isn't painless (bummer), and sometimes it can take a few days for the pain to subside.
If it continues past a few days, or if it's bad enough that you keep needing pain meds - please tell your nurse or your doc.
My first picc line was excruciating - and the home nurse kept telling me I would feel some "discomfort" - it was so far beyond discomfort! But I thought, "ok, I'll wait it out."
After a week of this, I saw my LLMD who immediately pulled the line. The veins were spasming, and even though it looked like a good placement - it was not.
They re-did the picc in the other arm. That time I insisted that I did not want a tech to do it. They also used a pediatric line.
The difference was astounding. Didn't feel it going in, and while there was minor discomfort for a day or two, it was infinitely easier.
So - hang in there, but if it keeps hurting badly, please talk to your LLMD.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Tracy, We share our PICC-day! I got mine yesterday too. My pity party has come already and left with my infusion nurse, who was really nice. She said it'll hurt for a couple days but then get better.
Do you have a nurse come out to you? I feel so much better now that I saw mine. So much more at ease.
Hoping your arm feels better soon. Take care of yourself!
Posts: 236 | From Washington | Registered: Jul 2008
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Tracy9
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posted
Well, turns out my pity party was well deserved. I just got back from the hospital, where they pulled my PICC line since I had a blood clot in my arm.
Today the pain was horrific. It was so bad I cried for two hours and started crying for my Dad who died ten years ago, something I have never done before.
The chest pain was bad and I couldn't breathe unless I was laying down. The IV nurse came around 6 pm and measured my arm. She said out loud, 38 1/2. I told her yesterday it was 33. She said no, that 's the length of your PICC line. I said no, that was 43. It is highly unusual that I would remember these numbers, but THANK GOD I did.
I showed her the card they sent me home with that had the numbers written on it. She "hmmphed" and measured my right arm. 32. She then said, something is really wrong here, I need to call my supervisor.
She told me I had a serious problem, the PICC was bad, I probably had a blood clot and needed to get to the ER. I'll spare you all those pitious details.....like finding a ride and laying there 7 hours alone....okay, I guess I didn't spare you so much.
They did a CT scan of my chest and ultrasound of the entire PICC line. When I first got there the ER doc said he highly doubted I could have a clot on a brand new line. Several hours later, he came in and said, "well, you DO have a blood clot and I need to pull your line."
I cannot tell how how much better I feel to have that chest pain gone and be able to breathe again. They gave me my Rocephin there and sent me home with a hep lock (or whatever you call it; that's what we called it when I worked in hospitals) and instructions to contact Radiology to get another PICC placed either tomorrow, Sun or Monday, whenever they can do it.
I have to say, I am far less than enthused about the idea of another PICC line. This was quite the ordeal, 7 hours at the hospital getting it, 7 hours in the ER today losing it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Rianna
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Member # 11038
posted
Poor Love,
I had a PICC and honestly mine took 15 minutes and was not painful but did hurt afterwards.
I will joing your club for a little cry as my Picc had to be removed and I had a Hickman Line in yesterday and that was horrid, but I have to say the hospital were fantastic.
So make sure you rest up, be pampered and I will think of you every time I try to sit up and cant today as someone has stabbed me in the neck twice!!!!
HUGS Rianna
Posts: 1172 | From UK | Registered: Jan 2007
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Ocean
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Member # 3496
posted
I'm sorry Tracy, I don't blame you for not wanting another picc! I'm so glad that you remembered those numbers though, whew!!!
Good thing everything worked out for ya, hope the next one goes in easier and feels much better!
merrygirl
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posted
(((((Tracy)))))))))))
Posts: 3905 | From USA | Registered: May 2007
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TerryK
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posted
What an ordeal!!! I'm so glad you're OK.
Holding good thoughts for the next one to be a breeze.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tracy,
I'm so sorry you had to go through any of this. I'm so glad that you got it checked out and even more glad they could actually find the problem.
I guess I don't have a lot of faith in the medical system these days, but sounds like you can have some relief from the pain and be justified in knowing that things just weren't right.
I know you will now be nervous getting another one done, but hopefully they will be more careful and precise. Please keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
[Oh, Tracy I'm sorry to here about your pain from the PICC! I hope it is just from irritation and will pass soon, and that you'll have no more problems with it! You do indeed deserve a grand pity party!
DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Tracy9
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Member # 7521
posted
THANK YOU EVERYONE!!!
And Rianna, you are most certainly welcome to join the pity party. It sounds like an invitation is most certainly warranted.
That sucks!!! I hope you feel better soon; I know it was so hard not being able to move or lean on my left arm without horrible pain. In a way I'm glad the new one will be in my right arm, because I sleep on the left side of the bed and nightstand is on the left, so everything I reach for is with my left hand....it was tough!!
I am still feeling short of breath today with any exertion, so I'm resting in bed. I have to give myself my first infusion using this temporary IV site today.
I am still marveling at how wonderful my chest feels; gosh you never know how nice it is to be able to breath and not have chest pain until you have it!!! Even though it was only for 36 hours I feel like it was forever, and having the pain and breathing issues gone feels like heaven!!!
I didn't call like I was supposed to today for the PICC; maybe tomorrow. I need a break.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Boomerang
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posted
Wow Tracy, what an ordeal you have been through. Sure glad you got that line pulled, though. Hope you feel better soon!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Tracy9
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Member # 7521
posted
Rocephin question: Does it make you nauseous? I'm feeling like barfing.....and haven't been feeling like eating at all...which is fine since I have weight to lose.....but could I be getting nauseous from it after two days, not right away?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Member # 7521
posted
I'm really struggling with getting this rescheduled. This is SO unlike me. I take every test and treatment in stride, go through painful procedures and ER visits without my hubby all the time because I know it bothers him more than it bothers me. Shots, tests, you name it....no problem.
It takes a lot to rattle me medically. I'm rattled and I don't like it. This isn't me. I didn't call Saturday OR Sunday to see if they could place another PICC. I have to do it tomorrow because this peripheral line will have to go.
I'm scared, and this is SO not like me, and I don't like it. I feel like crying again. Where did Tough Tracy go????
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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posted
I've resorted to a crying jag. I'm home alone, can't hold down any food. Been vomiting all afternoon. I'm fine until I eat something then I puke it up. I did manage to keep down some saltines a few minutes ago to take my meds, so far so good.
I kept feeling wetness at my IV site so I removed the covering and there is blood all over my arm inside the clear cover. The clear cover is torn. I must have ripped or pulled it during sleep. So here come the tears.
I'm home alone waiting for IV nurse to call back. I know this must mean there is not a sterile environment here and something is bleeding outside of the tube/IV site.
I have NEVER been so upset or had so much trouble in the 4 1/2 years since I've had Lyme. Melanie thank you for telling me about the mental side effects. I don't usually cry but I feel like it every time something goes wrong. I am also pms'ing so great combo, huh?
I feel like such a mess; I actually called my mother crying. We are not close and she is very distant and critical, but she was pretty supportive. I am searching for other numbers of people to call....MerryGirl, Rob, Sara, Icey, I bought a damned address book to keep them all handy but never filled it in!!!
Who feels like talking to a blathering sobbing Lymie?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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posted
Home nurse said to flush the line, it went fine, so she had me infuse. All went well. I'm feeling better. New PICC tomorrow....I'm mentally preparing!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Member # 7521
posted
They can't get me in today for the PICC. They said they can get me in tomorrow, but I had to call the LLD's office and get her to fax another PICC order...don't even know if that went through yet.
I have this heplock that is only supposed to stay in three days, it would "expire" about 8 pm tonight. Do you think another 12 hours or so will be okay? I'm sure I'm going in tomorrow a.m.......I 'm hoping I can just leave it there till morning. If not I think I can pull it out myself, I mean how hard can it be just to pull the thing out???
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymielauren28
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Member # 13742
posted
Oh Tracy!! I just read your last four or five posts - you poor thing!! You can't be tough all the time dear, it's perfectly okay (and normal) to be scared and of course, to cry.
I'll PM you my number and anytime you need a shoulder to cry on, call me!! I may need your shoulder now and again, and that way I won't feel so bad, hehe.
Glad that you're getting it put in tomorrow. Did the nurse check out the blood on your arm? Everything okay with that???
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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sammy
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Member # 13952
posted
Wow, you've had a frustrating couple of days! I hope and pray that all will go well with the new line.
As for the heplock, you or a family member could easily pull it out after your evening dose of Rocephin. All you have to do is untape the site and gently pull the cannula out(it might even come out as you are trying to untape). Be ready with a couple gauze pads to put pressure on the site afterwards.
Take care Tracy:)
Posts: 5237 | From here | Registered: Nov 2007
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Tracy9
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Member # 7521
posted
Thanks, Sammy. It's good to know, since it's just another string of problems today.
Dr. L said it is highly unusual to get a blood clot so soon from a PICC line and she wants me to be worked up by a hematologist for clotting disorders before she'll order another PICC.
I called a hematologist in the area and they promised to call right back, were going to try move patients so I could get in on Monday. Never heard back.
I called the home IV company to let them know I will need to continue with heplocks for a while and that they need to be changed every three days. They said they are good for a week but that they won't do that as insurance doesn't pay for it.
I called the Outpatient Procedure Center at Rockville Hospital where I got the PICC placed to ask if they could change my heplock/peripheral IV once a week. They said they cannot do anything without orders from a doctor ON THIER STAFF. They will not do it if ordered by Dr. Lanstman.
I called my PCP (the not good one but the one who is on my Medicaid and in CT) and left a message with the office staff to ask them to call in orders to Rockville Hospital to have my IV changed once a week.
There was a lot more he said/she said to it, but that's the summary.
Conclusion: I am screwed. I have a line in and no care lined up. I hope something comes through here.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Tracy, I had pm'ed you but not sure you saw it with the same advice as your doc--to see if you have a hypercoagulation issue before you get another PICC line. I think your fears about the PICC are your body and good instincts talking to you, not weakness.
I don't know about the heplock but if it were going to expire, I'd myself go to the E.R. to have it removed properly and with sterile technique.
I remember that Barksplinter, a nurse on here whose wife was also a nurse with very bad lyme, used a Groshong catheter. I don't know what that is compared to a Port but maybe either one of those is safer in terms of clotting.
I would seriously reconsider about getting a PICC. Also, where did the clot go to? Is it totally out of the body?
Best of luck to you.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Well I am glad they are looking into the clotting disorder. It sounds all very frustrating but better safe than sorry. Hmmm I don't even understand where they are going from here I guess!
I think you will hear back from them tomorrow. My psychic suspicion xoxoxoxoxxo Posts: 588 | From Rhode Island | Registered: Jun 2006
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Tracy9
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Member # 7521
posted
Thanks, Oxygen. I may have seen your PM but the memory is lacking here....
They said the clot would dissolve, I am to use heating pads and take Motrin every six hours to dissolve it. It was right near the insertion site and nothing to worry about, the doc said.
I need to find a hematologist and get an appt tomorrow and go from there. In the meantime, if worse comes to worse, I'll go to the ER and get my heplock changed if I don't have another option by Thursday.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
The heparin can cause clotting... Have you been having your blood monitored? I know - it is a paradoxical reaction caused by heparin - it is called "heparin induced thrombocytopenia" see this link...
posted
Tracy, I can't even believe what you've been through. My God.
My picc is in my right arm- I asked if I could have it put in the left side, but the nurse told me that our viens are different from one side to the next and that if you use the left side there is a greater chance of your line taking a wrong turn.
Did they ultrasound your neck afterwards to make sure it went where it was supposed to (down not up)??
The part about your line being such a weird length and that it was on the left, has me wondering...
I hope things brighten up for you.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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Tracy9
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Member # 7521
posted
They did not ultrasound my neck until I was in the ER with my upper arm all swelled up and in excruciating pain.
Now I don't even actually know what's next, except it seems my heplock is good for a few more days, so I expect I can get my Rocephin for 3 more days before it will have to be changed.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Tracy: I remember it hurting a lot at first too
Thinking how am I going to do my job with this line, etc.
It did get better. Make sure to keep your back up straight. I was afraid to pull on the line so 9 mos later when I got it out, had scoliosis.
What's even more fun is getting a mammogram with a PICC!
I felt so much better especially after usuing Claforin that worked the best for me
Check out Xerosox.com for an arm cover you can actually wear in the shower. This was such a blessing for me.
-------------------- RV Posts: 249 | From Healing in USA | Registered: Mar 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
The IV nurse is on her way to change my heplock today, yahoo, and they are trying to get reimbursement to do the changes here at home.
Meanwhile my PCP DID call in the order to Ambulatory Care at the local hospital for me to have it changed there weekly, so I have that option too.
So the good news is; I'm going to be all set getting my Rocephin until I get through the hematologist and clotting evaluation.....so I'm not feeling so panicked now. At least I have a way to get my IV until the rest of it gets sorted out.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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