PICC Line Dates

11/21/2014 – The line has been in 11 months and 5 days.  It’s driving me bonkers.  It was inserted on December 16, 2014.  I had trouble from January to April and then had a break where things were fairly good.  Then November 11th happened.  Here is a time line from January 2nd through November 21st.

December 16, 2013 to December 2, 2014 – PICC dates for PICC Line 2.0 aka Nick.

This post will be dates and information for me to look back on later.

  • January 2nd – noticed one small tiny bump under stat lock
  • January 9th – noticed a few more tiny bumps under stat lock.  Used foam strip to secure line.
  • January 16th – bumps had not gotten worse, but not gotten better.  Used Grip-Lok
  • January 23rd – bumps had not improved, but had not gotten any worse.  Used foam strip again to secure line since we didn’t have another grip-lok and we didn’t want to use a stat lock.
  • January 25th – my arm was starting to itch.
  • January 26th – my arm was itching worse.
  • January 27th – my first IV Rocephin treatment.  Told nurse it was itching badly, but I’ve had it itch way worse in 2008.  I was going to have her change it, but the office was so very busy because our state was expecting snow.
  • January 29th – I noticed a “patch of brown” on the dressing, but since I was having it changed the next day I had no worries.  However, that appointment got postponed due to major snow storm.
  • January 31st – I wasn’t surprised when we found a lot of irritated bumps and it was oozing. We used Mefix (like normal) and sterile gauze over the oozy blisters and did not use a securement device.  She left a message for my LLMD, but he was out of town that weekend.  We scheduled a dressing change for Monday.  I ordered 5 Grip-Loks from Infuserve
  • February 3rd – The blisters were still oozing, but the bumps were less distended.  My LLMD called in a prescription for Bactroban on the following day.
  • February 6th – My LLMD came in to see.  My bumps were dried up at this point, but it was still very irritated. My LLMD came in to see the dressing off and gave instructions on how to change the dressing for a few weeks.  Bactroban 1 Dose.  We used a small piece of paper tape to secure the line.
  • February 10th –  Continued to see improvement, but still wasn’t clear enough to secure with a Grip-Lok.  We used Bactroban 2 Dose.  Scheduled appointment for Thursday, but we had another  snow storm which caused the office to be closed on Wednesday & Thursday and a delayed opening on Friday.
  • February 14th – Funny story about this day – because of the snow storm and change in days, my normal lady couldn’t change the bandage for me.  So she gave instructions to another staff m ember at the office.  However, the snow delayed her arrival and I had to wait nearly an hour after I arrived to get my dressing changed because the only people that were there aren’t allowed to do that kind of nursing care.  I finally asked if I could go rest in the IV room and as I got up I saw the lady that would be changing my dressing.  I went to the IV room anyway and after sitting there for a few minutes my LLMD came into the room – and said that HE would change the dressing.  UM –  I think my face turned white – pure white!  Apparently he called the normal lady and asked her to talk him through my dressing changes (since they are not the normal) –  But I told him that the other lady had arrived and I was very patient.  :)Anyway, she changed it and I noticed a few more red areas which was consistent since I had an itchy day the day before.  However, there was no oozy.  She applied a bit more Bactroban (dose 3) and sent me on my way.
  • February 18th – Bactroban (dose 4).  I pointed out the new areas to my regular changing lady and she applied not one, but two sterile gauzes with Bactroban – and really secured my arm well with two MeFix Dressings and secured with a lot of paper tape.
  • February 21st – Bactroban (dose 5).  It seemed somewhat improved, but my skin was irritated from so much extra MeFix & tape.  I’ll go back on Monday.  I had hoped that I would start seeing a lot of improvement and no sterile gauze with Bactroban would be needed at this point, but my arm was really itchy again last night.  I think part of it is that I am allergic to latex and the sterile gloves are latex and another part is that there is so much “extra” MeFix & papertape that things are just irritated.  But I’m just thankful that it’s not like it was last time – it itched all day and all night – and oozed quite quickly.  Sometimes it would ooze before I even get out of the office.
  • February 24th – Bactroban (dose 6). My arm looked better.  However, I woke up that morning with a rash on my wrist & blisters in between my toes (will write a blog post on those later).  We moved the Mefix up a bit to give some blisters that had been covered up with tape a chance to breathe
  • February 27th – Bactroban (dose 7).  My arm looked pretty good actually, but not good enough for securement device yet.  However, my wrist rash looked worse.
  • March 3 – Bactroban (dose 8).  There is pretty much only one tiny spot that still looks like it needs special care.  So no securement device yet. I am hopeful that will happen on Thursday, but if it doesn’t – that’s okay. I’d rather my arm stay nice and clean.  It’s been “secure” with nothing extra special since January 29th.
  • March 6 – Bactroban (dose 9).  My arm was looking wonderful.  Both insertion & under where the securement device used to be.  We decided that we would NOT be using a securement device to keep it nice and healthy.
  • March 10th – my arm started itching again.  It’s weird because it’s not been that itchy. (January 31st to March 10th – no securement device at all)
  • March 11th – What would have been Bactroban (dose 10) – wound up being Bactroban (dose 1).  What sense does that make you ask?  Well, my arm looked phenomenal where we’ve been using the Bactroban and we would have used one last dose on the area – except under the biopatch, there was an oozy large blister that had oozed brown stuff – this was pretty much where I was itching the day before.  I just closed my eyes and shook my head.  After lots of contemplation, we decided to use the Grip-Lok securement device to stabilize the picc line and go without the biopatch.  After clearing it with the doctor, we used the Bactroban on a sterile gauze over the insertion point.
  • March 12th – Last night my arm pretty much itched all night.  It was mainly under the gauze, but it’s been consistent enough to make me concerned.  So I’m going to have it checked out. Arm looked just like it did yesterday.  I feel it looked maybe 1% better.  I’ll go back on Friday to have it checked out again.  Used Bactroban (dose 2) on picc insertion site. It hurt when she pulled the dressing off, but I remember it doing that when I had “back to back” changes before.  My Grip-Lok looked fine so we did not change that .
  • March 14th – I had another dressing change – Bactroban #3 on insertion spot and Bactroban #10 under grip-lok.  My arm under the grip-lok looked okay, but there was a tiny spot that never healed from before so we decided just a tiny drop of bactroban might be helpful.  My insertion site looked slightly better because it had crusted over where it was oozy.  It hurt again when she pulled the dressing off and since this I’ve had several times where it feels like my picc line is pinching me, but I think ti’s just so sore from 3 dressing changes in 4 days.  I’ll have it changed again on March 17th.
  • March 17th – Dressing Change – Bactroban 4insertion spot –
  • March 20th – Dressing Change – Grip Lok added
  • March 21st – Ooze began coming through my dressing.
  • March 22nd – After watching it for a while on Saturday, I decided I must get to the doctor to have it changed.  It was an emergency trip to the doctor and they weren’t even open, but fortunately someone trained in dressing changes was there and she took care of me.  It looked awful.  Worst it’s looked since I’ve gotten a PICC this go around.  It was the exact shape of the grip-lok.  So much for that alternative.  We decided a biopatch was a must even though it had previously caused me problems because we weren’t using a securement device.  We used Bactroban all over the rash with sterile gauze.
  • March 24th- in the shirt time it looked better, but it was still pretty awful. I had complained on FB during this time and specifically asked for no help (because generally I got answers that I had already tried), but a friend messaged me to ask if I had ever heard of putting Nasacort (nasal spray) on my arm under the dressing.  I had not.  She sent me instructions and I bought a tiny bottle and brought them both to my 24th appointment.  I shared with my nurse, but since my doctor was out of town we decided to continue using the Bactroban and that by Thursday – she would have an answer.
  • March 27th – My doctor approved the Nasacort, but was concerned that I might have a reaction to it.  So we decided to do a test patch on my other arm and continue with the Bactroban one last time because no one would be availalbe in case of emergency over the weekend.  Test patch caused no reaction.
  • March 31st – My arm looked better, but not great.  We sprayed the Nasacort on after cleaning it like normal.  Then we let it dry completely and put sterile gauze over top.  Then added the dressing.  It felt SO good.  I went home and did not itch even once.
  • April 3rd – My arm looked so great that we decided to extend my dressing change date. So amazing that it went from still red and gross looking to very dry & crusty in such a shirt time period.  And I’ve only had a bit of itching (and by bit I mean I woke up one night with a “slight” itch and I scratched over the dressing for a few seconds and it was gone).These are the dates I got a dressing change.  Used Biopatch, but No securing device – used Nasacort with piece of sterile gauze under just to protect my arm from the plastic on the picc line
  • April 9th
  • April 15th
  • April 22nd
  • April 28th
  • May 6
  • May 14th
  • May 20th
  • May 27th
  • June 2nd
  • June 10th
  • June 17th
  • June 23
  • June 30
  • July 7
  • July 14
  • July 21
  • July 28
  • August 4
  • August 11
  • August 18
  • August 26
  • September 2
  • September 9
  • September 16
  • September 22
  • September 29
  • October 7
  • October 14
  • October 21
  • October 28
  • November 4I had no notable problems throughout these changes.  On occasional itchy spots and would use extra spray of nasacort.
  • November 11 – went for a normal dressing change and there was a rash.  Put on Mefix dressing oddly so that the rash was exposed.  I went home and put Bactroban twice that day and at night I covered it with sterile gauze.
  • November 13 – went back and on the right side, sterile gauze with bactroban.  left side sprayed nasacort.  Mefix on top.  Told to emergency call if there was a problem.  The ointment has spread out onto the gauze I can see it, but not feel it.  sent message to nurse on 15th, but told her it would probably be okay until monday and I’d message her if that changed.
  • November 16th – it does itch off and on, but I think it will be okay until Monday at dressing change time. I think it’s coming near the time of my PICC line.  Today is the 11th month I’ve had my line.
  • November 17th – It looked better, but not perfect. Repeated procedure from the 13th.
  • November 19th – planned 2nd change.  Happy with the way i t looked and only used Nasacort.
  • November 21st – woke up throughout the night.  I was itching and scratching all night long.  It bothered me enough to contact my nurse.  They will squeeze me in today to look at it.  5 dressing changes in 10 days is so not cool.  This was my status on Facebook today: I feel that I have been extremely patient with this whole “got a tube in my arm” thing. However, today – I must say THIS THING SUCKS!!!!! Even though it’s nice to pretend differently, it really does change the way you do everything and I can deal just fine with most of it, but the past couple of weeks have been a little challenging. I know the benefit outweigh life’s little irritations, but sometimes I just want to rip off the dressing and yank the darn thing out! How’s that for real?I was told to come on in that they didn’t have any slots available, but they’d work me in. I walked in – signed in – and I was taken back right away. The good news is that there were no new blisters or anything “we’ve got to pull this right now” alarms that went on. However, my skin is extremely red & dry. My biopatch was rock hard. And the edge of my dressing had spots that had been bleeding because I was scratching in what little sleep I got last night. These are not such great things. We shrunk down my dressing so that part of my skin could breathe since I’ll be back on Monday for my follow up. I’m going to keep my sock off as much as I can so that the normally covered spots can breathe and apply some lotion on the areas that are exceptionally dry. I’m not sure what the remaining life cycle on this line is, but I do know that it’s driving me bonkers. It’s my lifeline, literally. The benefits of having access to my veins is huge. I keep reminding myself that it beats the alternative which is being stuck over & over again with no success for IVs or blood work
  • November 24th – was told that my line was coming out.  Then, “oops we dont have the special vials for the special blood work we want to run.” It was being rushed and hopefully would arrive that afternoon so we scheduled appointment for the next day.  Got a call that evening saying that they had not heard from the special vial people so they wanted to push my appointment to Wednesday (the 26th).
  • November 26th – got there with hubby in tow because they were pulling my line to be told that the stuff had not arrived yet.  Because it had been since the 21st and they were going to be closed for 4 days (Thanksgiving through Sunday), they had to change my dressing.  I wasn’t happy, but what else could I have done. My arm looked pretty good so that made us all happy since they were going to be closed for 4 days with absolutely no way of having an emergency dressing change should something happen.  We looked at the calendar and decided to give them an extra day for the vials to arrive and scheduled for blood work and picc line pull on Tuesday 12/2 – with the caveat that I could all on Monday if my dressing & line were giving me problems, but that Tuesday was a better bet for the supplies to all be there for my lab work.
  • I continued to use coconut oil on my exposed skin and had little problems, although at this point I was wondering if it would ever come out.
  • December 2nd – the big day.  I named my picc line Nick and thanked Sir Nicolas for the job he’s done and went in for the big yank.  It did not take long at all and I was in and out of there quicker than you can say Jiminy Cricket. Actually I hung out for a bit because I’ve been in there every single week once or twice (sometimes three times) this entire year.  It’s weird to know that I won’t actually be going there for anything at all next week.  I got to try out the new sauna for a few minutes.  We didn’t want me to begin sweating because I just had my line pulled and once I start sweating – I have a hard time stopping, but I got nice & warm. I pretty much got to say hello to everyone in the office and was met with lots of smiles and hugs.  They all know I’ve had this line forever (2 weeks shy of 1 full year) and all the troubles I had with it from January to April – and then there towards the end.  “Nick” got out in just the nick of time.  I’m getting my traditional after my picc line pulled hair cut today.  I need to decide what I want her to do.  After my line was pulled, I called my friend to find out if she was coming over to the house – and then I called my best friend.  I told him that there was something missing from my heart – hooping & hollering ensued.

PICC Update

Since April 15th, my PICC line has been very stable.  I’ve had very few problems and I’ve only been going in for dressing changes once per week.  However, this week (on 11/11/2014) that changed when I went in on Tuesday and they discovered a rash.

So I get to go in 3 times in 6 days.  Not my idea of a fun time, but I think we caught it in ti me that it should be healed up by Monday.

Next couple of weeks – Detox

I’ve been focusing on detox the last two weeks, but I’m going to kick it into high gear today.  I will also focus on Coxsackie Virus the next couple of months too.  I will restart my IV and oral antibiotics the first Monday in August. After focusing on the IV treatment for a couple of weeks, I will focus on parasites for a week and detox the following week.  Then I will repeat the IV and oral antibiotics, Parasite and Detox weeks again.

I am hopeful that this round will work wonders and help put me back into a better place.

Back to the drawing board

I have had a very difficult few weeks.   At my last follow up, we discussed focusing on a parasite protocol.  We decided to do this based on some of my recurrent symptoms.  I also was pulling out of my IV antibiotic therapy fairly well and we were hoping to go a while without needing anything to treat specifically Lyme and Bartonella.  The Parasite protocol would cover some aspects of the Babesia coinfection.  The first few weeks were bad, but  nothing that I couldn’t handle.  On June 23rd, I began a new parasite medicine and within a couple of days my mild to moderate headache changed over to a severe headache.  Next thing I knew, it had been one week with a severe headache.  My head was pounding and throbbing at the front, but then it became out of control and my entire head hurt – and it felt like there was a belt strapped around the circumference of my head and squeezed to the tightest possible notch.  I tried a lot of different options, including skipping doses of medication and focusing on detox.  I even went back to some over the counter pain medications, but nothing put even a dent. Last week I  grabbed my last straw.  I felt extremely discouraged that I had fallen so far backwards in my symptoms.

Ultimately, we decided to push up my follow up appointment.  We went back to the drawing board today.  I will focus on detoxification for a couple of more weeks along with some herbal remedies.  Then I will return to some IV therapy (Still have my PICC line) for a few weeks and then focus on parasites again for a week or two. Then I will repeat this process. I am hopeful that this back to to board approach will work.

In addition to all of this, I needed to do something that would lift my spirits.  I have been posting Songs of the Day (SOTD) on my FB page for the past week and decided to add a tab to this website to serve as reminder for myself when I need a little cheering up.  Hope you all like it too.  🙂

 

 

I am alive

Yes I know.  I’m a horrible blog writer.  I *should* write more often, if only for my own memory sake.  But I forget.

So I thought I would share with you three things.

The good:  my PICC line is doing well.  I’ve now had it longer than I had it the first time (as of today – it’s been 2 days longer than I had it the first time).  Since I had the MAJOR oozing episode and we got that straightened out – we’ve continued the nasacort, only mefix, no statlock ritual – and it’s doing really well (knock on wood).

The bad:  my Coxsackie A & B virus panel came back positive.

The ugly:  I’ve had a headache now for nearly two weeks straight.  It’s a throbbing high pain headache.  It varies from a 7 to a 10 on the pain scale.  It’s been so bad on a number of occasions that I’ve cried because I didn’t know how much more I could take of the pain.  I decided with two people at my doctor’s office to skip a few day of killer medicines to see if that would help.  So far – it’s not (today was day 2 of skipping).  I’ve tried a lot of t hings to get it to reduce in pain level and so far nothing is helping. I hope it eases off soon because honestly it’s quite painful.

Sharing information

Over the last couple of days I’ve been getting emails regarding my treatment protocol & my LLMD’s information.  It is my choice to protect my Lyme doctor and I do not share my LLMD’s name with anyone online.  I barely will share that information in person.  If you aren’t quite sure why I would do that, please take the time to watch  Under Our Skin.

To find the names of LLMD’s it is best to contact ILADS.

I’m alive

I intend to do better with my blogging, but then something gets in the way.  Like time gets away from me even though I’m mainly only treating.

What have I done lately?

From March 17th to April 17th – I did two fundraisers – in which I raised over $900.00 for NC Lyme Advocacy!  Very excited about that!

I’ve also sold several orders of Lyme bracelets – the We Fight Lyme Together Styles. If you are interested – you can order straight from here. The biggest portion of the proceeds will go towards advocacy efforts in NC that I put together.  🙂

*Bypass Information* Pay through paypal after you send in the form – the paypal email address is livinglymelife@gmail.com –

Make sure you pay the correct amount in full.  Here are the amounts in full including shipping costs (and tracking)
3 bracelets – pay $15 (or $16.05 if you want tracking)

5 bracelets – pay $21 (or $22.05 if you want tracking)

7 bracelets – pay $27 (or $28.05 if you want tracking)

10 bracelets – pay $33 (or $34.05 if you want tracking)