*Update, scroll down to see post from today (9/9)*
I just finished one infusion, had the other one primed and ready to go. Flushed my line with no resistance but noticed a cold sensation on my arm. Surprised I flushed a little more and immediately noticed the Biopatch appeared wet.
So apparently my PICC line has broken/cracked/sprung a leak (exact same thing happened last Sept and I had to get it pulled). I was hoping that this PICC would last, and it did for a year, but I wanted to be better before I needed to get it pulled.
Please pray for me. I'm really upset. I don't want a new PICC but I know that I need one because these new meds seem to be helping.
My LLMD is in another state so it is always difficult to arrange for care here. It will probably be several days before I can get this line pulled and replaced. That means several days without meds. When I stop the meds my symptoms come back within 24hrs. I don't want to lose what I've gained.
[ 09-09-2010, 05:47 PM: Message edited by: sammy ]
Posted by tamboski (Member # 23331) on :
thought r with u
Posted by bigstan (Member # 11699) on :
Sorry Sammy it happens. Maybe sleep put stress on it, or it was defective to begin with.
I think that you should pull it right away, or go to an ER if you have to.
Now you have an open environment which can really cause a dangerous situitation to occur. By allowing bacteria or something else to penetrate your vein.
What type of pick? is it the purple one?
Posted by feelfit (Member # 12770) on :
oh gosh, so sorry sammy. you'll be in my thoughts. hoping that everything goes smoothly and that you get a new one soon and without a hitch.
i know that you have a medical background, but is the leak under the dressing? i would do what Bigstan has suggested and have it pulled asap.
thinking of you...
Posted by blinkie (Member # 14470) on :
sammy, sorry to hear. I went through the same thing in May. I had only had my PICC 4 months at the time. This second one is holding up better, but it clogs all the time and needs cath flo.
I need my PICC too but I hate it...itches like the dickens constantly.
Take a deep breath. It will get better. Maybe you need different meds that will sustain some improvmenet.
Posted by Rumigirl (Member # 15091) on :
Oh, Sammy, I'm so sorry to hear this! Yes, please do get it pulled ASAP. I do know that if you don't use it, it isn't as dangerous as one might think (as per your dr). But still, better to have it out as soon as possible to avoid any possibility of infection.
And, yes, of course you will need another one as soon as practical. Just what you didn't need! I will definitely pray for you, and pray that all goes smoothly to get another one quickly. Be nicely persistent with the office staff to facilitate getting the orders.
What new meds are helping, if you don't mind my asking? That's great that something new is helping.
Posted by springshowers (Member # 19863) on :
Sammy Sending thoughts and prayers your way and hope this all works out. Please be careful and do not let any infection start and do not hesitate or take too much time to get it checked out and taken care of.
Thoughts with you
Posted by kidsgotlyme (Member # 23691) on :
Posted by gatorade girl (Member # 24896) on :
Hugs!!!! Thinking of u
Posted by Lymetoo (Member # 743) on :
I'm VERY sorry to hear this, sammy. You've had so many problems with this sucky illness. You just didn't need this on top of it all.
Hugs and PRAYERS! Posted by sammy (Member # 13952) on :
Thank you all. I really needed all the prayers, hugs, encouragement, and support.
I called and left a message on the nurse's line early this morning. I clearly told them what had happened, requested that my doctor fax an order to have it removed and replaced as soon as possible.
I told them that I wanted to stay on my new meds (IV Levaquin, IV Clinda, Septra DS, Malarone) as planned because i think that they are helping. I'd like to see what they can do for me. I also don't want to relapse again, I get sicker 24hrs after stopping the Levaquin and only 48hrs after stopping the Babesia combo.
So hopefully they will understand that I need to get this taken care of now so that I can continue treatment and not get sicker because I have to wait.
As for the PICC, it looks fine for now. Insertion site is perfect, there is no pain redness or swelling in my arm. The dressing is clean, dry, and intact. The line only leaks when I flush it so I will not mess with it again.
Hugs to you all Thanks so much for keeping me in your prayers. I will need them to help get me through the next couple days.
Posted by jwall (Member # 22999) on :
Good luck Sammy! Remember, i just went thru a picc line nightmare, almost went into full blown panic, had it pulled and replaced...and all is well now. It is just more of a pain than anything to have to interrupt treatment, go back to the hospital, etc. Feels very overwhelming when anything like this goes wrong. Hopefully your Dr. can get the order over quickly to your local hospital and get you in ASAP. Thinking of you!!!
Posted by Rumigirl (Member # 15091) on :
Sammy, that's great that the Babs and Bart meds were helping so much. Because when people relapse so quickly off meds, Dr. B always says that it is due to co-infections, not the Lyme, as Lyme is slower growing.
We're praying for you to get this removed and another PICC inserted ASAP. Yes, when it happened to me, the dr sd that if I didn't infuse, it wasn't a risk for a few days.
But, of course, the best thing is to get it removed ASAP. Do you have a nurse who can do that quickly? Or do you have to go to the hospital?
Posted by lyme987 (Member # 22148) on :
Sammy,
I hope you get your pic issue squared away. I had a good experience the first time with a pic for 4 months and then I couldn't tolerate them any more. I clotted with three of them
I now have a hickman catheter (sort of like a pic but is at your chest and goes into a much bigger vein, thus no clotting issues) Maybe that is the answer for you if you are having trouble with them. It's been great for me-going on 5 months now
Posted by sammy (Member # 13952) on :
I so want to take it out myself but I know that that is not a wise choice. My RN, PNP, and other medical friends will not pull the line, I asked them last year when it broke! Had to try right? I trust my friends but I have a hard time trusting others with my care.
My local PCP will not pull the line either. He said ER. My insurance will not cover an ER visit because this is not a life threatening situation and I can't have home health care come out to remove it because I'm not "homebound". Urgent care won't touch it. My only option is to pay the full ER visit out of pocket (hundreds of dollars) or wait until I can have the procedure scheduled at the hospital. I will carefully watch and wait.
I talked with my LLMD earlier this evening. He faxed the order but I guess the hospital sent it back because they needed more information.
He faxed it back but by then the central scheduling dept was closed. Thankfully he's being supportive. Gave me his pager number incase the hospital has any other problems. He wants me to have the line pulled and replaced ASAP. Exactly what I need.
So I will call the hospital early tomorrow morning and hopefully they will be able to fit me in on the schedule. Have to pray that there will be an opening. And that all will go well. I really do have a hard time trusting others... I would much rather be the care giver.
Posted by TS96 (Member # 14048) on :
Hope all goes speedy for you today and there are no complications.
Hugs
Posted by Lymetoo (Member # 743) on :
Waiting to hear how you're doing, sammy!!
Posted by sammy (Member # 13952) on :
Feeling frustrated and concerned.
I called and spoke with the hospital's central scheduling dept at 9am. The girl assured me that I'd be able to get an appt today.
Then she looked through the faxes and said that my LLMD did not return the paperwork so she couldn't schedule me yet. I gave her my doctor's pager number to call and get whatever information she needed immediately.
She called, doctor re-faxed the forms, thought we were ready to go. Then when she tried to schedule the procedure the staff on the unit refused to accept the order because my doctor is out of state. Said that I needed a local doctor to cosign.
My local doctor cosigned for my first PICC but didn't have to for my second PICC or for my last outpatient visit to r/o a clot. So why now?
Thankfully my local PCP agreed to cosign the order. Schedule girl faxed it to him and was supposed to call me when he faxed it back.
So I called around noon to see if the schedule girl got all that she needed. She was still waiting for local PCP's signature.
Got impatient and called my PCP's office at 3pm. His nurse assured me that he signed the fax and sent it back immediately. Sent it before lunch!
Then I called schedule girl again. Told her that I was upset because I needed to have this procedure done today. Explained again that my PICC line broke and started leaking on Monday. My doctor ordered it to be removed today because the longer I keep it in the greater my risk will be of developing a serious line infection.
So she put me on hold and looked through the faxes. Guess what, they supposedly did not receive my PCP's fax again. Then she admitted that they might be having fax problems today. I'd say so!
So she called to ask my PCP to sign another copy and send it to a different fax number. Supposed to call me when she gets the fax back.
A few minutes ago schedule girl called back. She apologized and said that the unit will not accept the cosigned order. They said that it was illegal. They want a new order written by my PCP, signed on his own script. She tried to call my PCP again but he had already left for the day.
So now we have to wait until he gets back in to the office tomorrow. Schedule girl assured me that I will be able to have the procedures done tomorrow.
I've been working on this for 2 days now! If I knew that they would not accept my LLMD's orders I would have called and talked with my PCP yesterday.
I have another MD friend (that I've volunteered/worked with) that would have pulled the line for me today had I known that I would need it. She has her own family practice but works for fun in some of the local ERs. I didn't consider her earlier because her practice is over an hours drive away. I can't make it before the office closes now.
Still can't go to the ER because it is not a life threatening condition. I will have to wait until tomorrow and pray that everything works out then.
Please continue to pray for me. I'm already feeling bad from missing several doses of my most important antibiotics. Symptoms come back so quickly.
Hugs, thank you all!
Posted by WIGGY (Member # 15377) on :
Sammy, Lets us know how you are doing - praying for you...I hope this is fixed today
Posted by Rumigirl (Member # 15091) on :
This is unbelievable!! Please et us know what's happening. I hope you get it all taken care of today. Did the orders include inserting a new PICC? I assume so. What a run around. Considering that you are at risk for sepsis, this is terrible.
(Albeit, according to your dr, he said that that it would be ok for a few days as long as you don't use it. This was when I had the same problem).
Posted by Lymetoo (Member # 743) on :
AAARRRGGHH!! praying it all went well today (is that possible??)
Posted by Rumigirl (Member # 15091) on :
BTW, as you know, taking the line out is a VERY simple procedure. It's crazy that everyone is giving you such a hard time about taking it out! Esp given the danger of sepsis if it's left in too long. I've never heard of such craziness!
Posted by sammy (Member # 13952) on :
Hey all, I finally got home from the hospital. Glad to have my broken PICC removed and have a new one placed in the other arm.
It again took many phone calls back and forth today but everything worked out.
The nurses on the unit were so nice. They said that they had been holding spots for me for the past couple days and didn't understand why I was not scheduled until today.
When I told them what happened they were appalled. They told me next time to fax the order directly to them and they would take care of it. Hopefully there will not be a next time but it's good to know.
The nurse that inserted my PICC remembered me from last year. She did an excellent job so I was relieved to have her again.
After the old PICC was removed we looked to see where the hole was, couldn't find it. So the nurses flushed it and sure enough water spurted out the side. Seeing the hole helped validate (in my mind) that it really was broken and that I didn't go through all this trouble for nothing.
Thanks again for all your prayers and kind thoughts I can't even tell you how grateful I am.
Posted by Paul Mall (Member # 27581) on :
Sammy so glad you made out well.
Paul
Posted by wtl (Member # 19883) on :
Wow...Sammy...I just now read this. That's incredible.
I am glad that you finally had it out and replace the line with a new one.
It sounds really "encouraging" from your story that now my wife has just been ordered by the same office as yours to have her IV in. Sounds like I am going to have a lot of nightmares ahead of us. I am sure I am going to pick your brain soon.
Take care...
Posted by jwall (Member # 22999) on :
Glad to hear everything finally got straightened out. I went through the EXACT same thing since my LLMD is out of state as well. It was awful. I ended up having to go through the ER to be seen...which is never fun! Hopefully it is smooth sailing for you now.
Posted by feelfit (Member # 12770) on :
so glad that everything worked out sammy...back on the meds and feeling better, i hope Posted by lyme in Putnam (Member # 11561) on :
Hope you feel better soon.
Posted by Rumigirl (Member # 15091) on :
Halleluliah! I figured the silence meant that you were at the hospital getting everything taken care of. Finally, back to treatment, now.
Who else besides us would understand the craziness that we all go through?! Someone here recently posted that we are all stronger than we know. Amen!
Posted by gatorade girl (Member # 24896) on :
Feel better!!!!!
Posted by sammy (Member # 13952) on :
Thank you all for your kind thoughts. I'm still a little sore and trying to get used to the new line. Glad to be able to take my medicines again! Now if only I could get well enough to get off the IV's. That will be a happy day
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Thanks so much for keeping me in your prayers. I will need them to help get me through the next couple days.