Please share your experience with an IV or Picc Line

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CajunGrl
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Date Joined Mar 2009
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   Posted 9/2/2009 7:07 PM (GMT -6)   
As you all know, I will be seeing a new doctor that deals with neuro problems from Lyme. I am starting to get a little anxious thinking about being put on either an IV or picc line. If anyone could share their experiences, good or bad, I'd really appreciate it.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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3whiteroses
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Date Joined Jun 2009
Total Posts : 184
   Posted 9/3/2009 10:17 AM (GMT -6)   
I'm anxious to hear too...my llmd is talking the same for me. I'm afraid of the IV.

CajunGrl
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   Posted 9/3/2009 10:22 AM (GMT -6)   
I'm a little worried about a picc line and blood clots but I also don't know if I want to be stuck every week. lol.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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1bitten2xshy
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   Posted 9/3/2009 11:10 AM (GMT -6)   
I understand that it is all in keeping your line and dressing clean and dry. If you have a good home health nurse and are careful yourself....you should have no problems with the PICC line.

Dr. C's protocol is very good and very explicit on how he wants the dressing, the flushing everything.

You are smart enough to know if something does not feel or look right..(I mean with some medical background that you have).

He will also give you an Rx for an Epi pen in case of reaction and instructions.

Please do not let your fear of a PICC line (I know, I am a good one to talk about fear of a PICC line!!) stand in the way of getting well!!

You have come a long way to get here...I think once you meet with him you will feel alot more at ease as well.
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Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


CajunGrl
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   Posted 9/3/2009 11:20 AM (GMT -6)   
Thanks hun. I am getting anxious each day that the appointment gets closer. I'm gonna be a wreck by the time he sees me, lol. I'm concerned about having a picc line while being on the Depo shot. I will talk to him about everything. I'm just really nervous.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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1bitten2xshy
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   Posted 9/3/2009 11:25 AM (GMT -6)   
I do understand your fear...trust me I do. You know I chose not to have the picc but rather the mid-line for alot of reasons.

Maybe you can speak with him on having a mid-line. Just weigh all the pros and cons with him. He will listen.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


CajunGrl
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   Posted 9/3/2009 11:32 AM (GMT -6)   
I think I'd rather get the mid-line. I will be writing down everything I want to ask/talk to him about today.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Caldonia Sun
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Date Joined Aug 2009
Total Posts : 310
   Posted 9/3/2009 7:38 PM (GMT -6)   
I just spoke with a girl tonight that had a PICC for four months. She said it was not that big of a deal and that showers were the most annoying part of it. She knew I was frightened of it and advised not to be afraid of it. She also said it made such a difference so quickly in her symptoms and how she felt.

I don't know if that's what I'll be doing, but she was reassuring about it.

Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 9/3/2009 8:35 PM (GMT -6)   
I've had my PICC since 6/30/08 and the biggest problem I've had with it is that it occasionally gets out of position (stuck against the blood vessel wall) and won't give blood return for the routine blood draws. When that happens, I go get it replaced and all is well again. But I've only had to do this twice.

So instead of showering, I take sponge baths, and wash my hair in the sink. The fatigue is a much bigger problem for me than bathing with the PICC.

Yes, the most important thing about having a PICC or midline is good protocol for care of the line (flushing properly, etc.) and the site (dressing changes, keeping the site dry, etc.). Using as aseptic as possible technique for accessing the line is best - Husband and I use lots of alcohol swabs each week, for example.

Good luck,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, intermittant pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, homeopathy.


CajunGrl
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   Posted 9/3/2009 8:59 PM (GMT -6)   
I'm more worried about blood clots than anything else.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 9/3/2009 11:22 PM (GMT -6)   
I had a clot the first time I had a PICC (in 2002), but this time around have managed to avoid a clot. I'm using 100 unit Heparin as a locking flush, which prevents clots pretty well for me. The hospital usually uses 10 unit Heparin, and they were surprised I was using the 100 unit, but I like not having any clots...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, intermittant pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, homeopathy.


1bitten2xshy
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Date Joined Jun 2007
Total Posts : 849
   Posted 9/4/2009 5:34 AM (GMT -6)   
Dr. C uses Heparin to flush your line each time you infuse. He has the SASH system..For each infusion.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 9/4/2009 9:11 AM (GMT -6)   
Thanks you two! That's why I love this forum. I get answers and learn new things everyday.

I think it's more my nerves than anything. I just want to jump ahead a year and be better. I don't want to go through all of this! Grrrrr! I'm having the "why me" attitude again and have been having pity parties for myself, lol. I'm so pityful sometimes.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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mpbndc
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/4/2009 12:51 PM (GMT -6)   
Hey,
Had my PICC line in for almost two weeks now...it's no big deal. The only thing that "hurt" (and that's a relative term) was the shot to numb the arm area before they put in the line. That's about it.
Get mine taken out on Sunday and am a little anxious over that.

Just curious if anyone on here experienced horrible "brain fog" with their Lyme....this drives me crazy. I can take physical pain like backaches, but feeling like I am not in reality, or on drugs, makes me crazy.

Anyone? If so, how do you treat?

ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 9/4/2009 1:22 PM (GMT -6)   
I would start with a regular IV line to see how you react to the IV drugs and the flushes. Turns out my daughter is allergic to heparin and there is a special picc line that does not use it. If we had started with the picc line, we would have had to remove it and change it.

Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 9/4/2009 4:13 PM (GMT -6)   
Hi CG! I only had my PICC for 30 days, and if anything my blood got a little too thin with the heparin. I understand your nervousness, but once you talk to your Dr. hopefully he will alleviate some of your fear. What helped me was talking to the nurses at work who reminded that if the elderly residents with their thin skin and weak arteries can handle it it would be no problem for me. There was even one resident who had one at the time and she helped me to feel a lot better about it. The funny thing was that once it was in, a couple of days later, I started thinking about what ist was going to be like to get it removed, but then a nurse called from the healthcare service that set up the visiting nurse and supplies, and said that it was like an itch that you can't scratch, but now you finally can, and that it doesn't hurt at all. When it was pulled I really felt nothing, and I thought it would be gross looking and it wasn't at all.

I just kept trusting that I would be okay and that it was what I needed and that it would work. As I said before, though, from all that I have read on here and hear from others, I don't know if it was long enough, but am hoping that the supplements and herbs will be enough to take over and keep it gone. Good luck with your appt! Did you get my e-mail?

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 9/4/2009 4:32 PM (GMT -6)   
Thanks everyone! You have all made me feel so much better.

Turquoise: Thank you for that post. Yes, I received your email but haven't had a chance to reply yet. I'm so sorry. I've been so busy running around, trying to get things ready for this trip. I will try to get in touch with you when we get back. Thanks again!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 9/4/2009 8:10 PM (GMT -6)   
No problem! You just do what you need to do in the time that you are able to do it in. That was one of the things that I needed to learn for myself. I have taken care of others in the nursing home for almost 24 years now, and have lots of patience with them, but needed to learn to apply it to me too. I do what I can, and stop myself from worrying about what I can't get to.

My garden is full of weeds this year, and I didn't get many green beans, tomatoes or peppers, but the potatoes and corn for some reason did really well. Somehow, only with my husbands help, I managed to plant it, when I was not feeling well or really up to it at all. Over the summer I have felt well, but once the weeds got out of hand, I just couldn't bring myself to try to keep up with it, and it seemed like it was always raining too! But my point is that I'm learning to be kind to myself.

DazedDaisy
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/4/2009 8:25 PM (GMT -6)   
Jumping in the mix here....
Does anyone have any LLMD suggestions for Arizona? I currently see and LOVE Dr. H. in San Fran but with a IV line going in next week I feel really far away.

what is the difference between PICC and midline IV?
what is a SASH flush?
the supply MD suggested that I not infuse but rather do an IV push to save $$ since I am a cash patient any suggestions or experience?

the fog started to noticably improve after 4 weeks of IM (intramuscular) Rocephin/ Ceftriaxone..but my rear end can't take it any more....more than 90 injections later I have to move to IV. =( Also, I've read that it is the only way to cross the blood brain barrier, and since I am so neurologically impacted I am enthusiastic about killing the bugs!!!
Thank you all! It is really exciting to find you peeps...
Dazed Daisy

Post Edited By Moderator (CajunGrl) : 9/10/2009 11:51:43 AM (GMT-6)


KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 9/5/2009 12:56 PM (GMT -6)   
Hello..

CG
I so relate to your Fears and feelings. I just got a Port a Cath inserted on Thursday. 2 Days ago! If you want to PM me I can go over the details of it and I am glad i choose it over the picc line from what i have read and heard. But it is a personal choice.

DD I am in az and have the same question about doctors in az that support Lyme Disease and use IV antibiotics. There are a couple who are homeopathic and will do Antibioitics too but insurance then can be an issue.

KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 9/5/2009 1:04 PM (GMT -6)   
Here are a couple good sites to learn about the various kinds of
CENTRAL VENOUS CATHETERS (CVC) also called Central lines (Skin-tunnelled venous catheters)

http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Centralline

http://mededcon.com/cvct_c.htm

Cmacaran
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 9/9/2009 8:06 PM (GMT -6)   
http://www.cpmc.org/learning/documents/nur-piccline-ws.html#Understanding the Risks and Benefits of PICC Line Insertion

The above website is helpful. I developed early stage mechanical phebitis with my first line. Trying a second one friday. Heating pads help.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/10/2009 12:07 PM (GMT -6)   
DazedDaisy,

SASH means "Saline Antibiotics Saline Heparin". This is the order in which you administer each med. Here is a site that explains what to do:

http://www.oncolink.org/coping/article.cfm?c=1&s=38&ss=84&id=449

A picc line is threaded all the way up the vein towards the heart. A mid line is inserted in the middle part of the arm like an IV and doesn't need to be threaded up to the heart.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 9/10/2009 12:09 PM (GMT -6)   
Keephope and Cmacaran,

Thank you so much for the info!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


cleo springs
Regular Member


Date Joined Aug 2009
Total Posts : 76
   Posted 9/12/2009 8:49 PM (GMT -6)   
CG, the only thing that I don't do, now that I have a PICC line in, is give my dog a bath. She goes to the vet and gets one instead. Oh, I wouldn't go swimming, if I were so inclined, either, but haven't been inclined, so I haven't missed it.

I guess I COULD give the dog a bath if I wore the protector that I use when I take a bath or shower. But, I am enjoying the vacation from doing the bath, then all the towels afterward.
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