I need to go back through and update my PICC post with updates, but one day after I had a dressing change my dressing had ooze coming through. After watching it for a while on a Saturday morning, I decided to go to the doctor to get it changed. It looked awful. Worst it’s looked since I’ve gotten a PICC this go around. It was the same shape as the grip-lok. So much for that. We decided to use the biopatch even though it had caused me problems previously and I kept my Monday appointment. In just a short time it looked better, but it was still pretty awful.
I had complained on FB and specifically asked for no help (because typically it’s things we’ve already tried). However, help came in the form of an angel. This sweet friend of mine messaged me to ask if I had ever heard of putting Nasacort (the nasal spray) on my arm under the dressing. I had not. We decided to keep using the Bactroban that Monday (because doctor wasn’t there to say it was okay) and then decided to use the same stuff on Thursday because they wouldn’t be available for me over the weekend. On that Monday, it 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. It felt SO good. I went home and it did not itch even ONCE. When I got back on that Thursday – my arm looked SO GREAT that we decided to extend my next dressing change from Monday to Wednesday! It is such a blessing to only need to go to the doctor’s office once this week! 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).
I’m going to try to look at the dates when all of that happened to put in my running PICC line post.
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
After changing the dressing twice a week for weeks – using Bactroban under the dressing for the last 3 or 4 dressing changes – my arm is really starting to look better. I’m hoping that by Friday, we can restart trying to use the Grip-Lok so that I feel more comfortable at night sleeping. I’m just terrified I’m going to rip out my PICC line in my sleep so I wake up more often than normal.
This is “week 4” of my treatment plan. This is heavy detox week. Although it has the potential to make me feel better, it also has the potential to make me feel worse and because I didn’t “take care” of my body yesterday by attending a work training – today has been pretty bad. I’m overtly exhausted. I woke up with a sore throat, cough, stuffy and runny nose – and I was sneezing. I “catch” things very quickly. If I’m going to catch something, generally it is within the first 24 hours of being exposed. Sometimes it’s even faster than that. Then if I don’t realize that I’m coming down with a little something, it turns into a big something. To prepare my body, I took my “magical” Bio Chlor Dox drops before I even went into the training. I hoped that would be enough to keep my body from turning against me.
So when I woke up this morning with those symptoms including a low grade temp, I recognized it immediately. I went to my handy dandy drops and typically I can take 5 drops in the morning and 5 drops in the evening at onset of symptoms and be good, but after my normal 5 drops dose I still felt pretty horrible. So two hours later I took 5 more drops. Now the thing is I *can* take 10 drops 3 times daily, but because the drops can give a herx reaction – I chose a lower dose. It’s easier for my body and still has somewhat the same effect. I’ll probably take 5 more drops at lunch and then 5 drops at dinner and 5 drops at bed. The most I’ve taken in one day of these drops in ages. But I can tell if I don’t nip this in the bud at the start that I will get pneumonia, bronchitis, ear infections, sinus infection or a combination of the above.
My body aches – it’s not the “flu” aches – but a “herx/detox” ache. I’m just ready to scream in many ways because a day of “normal” caused me to have major problems today (and likely the rest of the week). I was hoping that I’d realize how much progress I’d made by attending the training, but alas instead I learned that I’m still not ready and will likely be saying, “I’m sorry I can’t” for a while to come.
* This post may be too gross for some readers. It involves vomit. I will put *** right before the “vomit” paragraph if anyone wants to skip over it.
This road is anything but simple. When I began IV antibiotics, I knew I would get sick. I knew I would get a lot sicker and tried to prepare myself for the herx reaction. Each IV that went into my body made me react harder. What does that mean? The first IV I did – it gave me extra twitches and overall I didn’t feel well – but if I wanted to I could have been on the computer, watched tv or whatever I wanted. The first week of treatment – through the first 30 minutes, I was pretty much able to do whatever I wanted – I even cooked some lunch during the first 30 minutes of treatment. Then I had to rest on the couch and was able to watch TV.
Fast forward to this week – I began on Sunday with one IV (Rocephin) and I started IV Cipro on Monday. IV Cipro is done about every 12 hours and the IV Rocephin is done once per day. By my third IV on Monday, I was pretty out of it. I didn’t get on the computer at all during this IV and it was tough to even watch tv. Tuesday – within the first 10 minutes on each IV I was under the covers tremoring. Yesterday morning, I woke up feeling awful. I didn’t even want to attach to an IV, but I did it anyway. I had a tough tough go of it. I began my Rocephin at 1:15 – and 1/2 way through I felt so faint that I thought I was going to pass out. It was difficult to walk even to the bathroom and my strength was so weak that it was difficult to pull up my pants. So at that point I called my husband and asked if he could come home from work to work at home – and slowed down my drip rate. I was hoping that once I deattached that I would begin to feel better, but it didn’t really happen. I was “burning up” – and had the shakes – and was extremely light headed and had this terrible taste in my mouth. It was pure awful. I fell asleep at 6:15 and slept soundly for 3 hours. I missed my 7pm IV Cipro, but thought it might be best to skip it anyway and hoped I’d feel better in the morning. Well, I still didn’t feel great and at this point my IV had been disconnected for some time. I shot off a quick email to my nurse and went back to bed.
*** if grossness bothers you, you may want to skip this next part. ***
As I rested, I began to drool. I couldn’t control the drooling. I couldn’t swallow the drool – so I just wiped it off with a hand towel. I knew there was nothing better I could do. As the time ticked away, I began to feel worse and worse. I realized I had to go to the bathroom so I gently got up and made my way to the toilet. As soon as I sat, I realized that it was going to be coming out of both ends. I don’t know how long this went on, but it seemed like an eternity. It got everywhere including my feet. I can’t stand having wet feet – so feet with vomit on it – OH MY- I was so disgusted by the feeling and I was so sick I could only wipe my feet off on the pajama bottoms I took off. Fortunately, I didn’t see it – or just the sight and smell would have made me regurgitate some more.
**** the grossness has ended.
I crawled back to bed. I was too weak to walk. I took my temp and it was 99.5. My normal temp is in the 97 range. I had been keeping a check on it and it had been staying in the 98 range which is fine – but the 99.5 range makes me feel so sick even if I’m not going through a herxheimer reaction. I rested awake for a while until I finally dozed off. I woke up this morning hoping I’d feel a lot better, but my throat hurt (from the gross episode) and I was still very light headed. So I decided to skip the 7am IV dose because I was going to the doctor for a dressing change anyway. I wanted to let them know what happened. By the time I got to my Lyme doctor’s office, I was feeling so weak. After my dressing change – the arm looks better, but still not healed yet – I took them up on the offer to have a lactated ringer in the office instead of waiting until I got home. I hooked myself up and I knew I was dehydrated because of the speed of the drip. Wide open when I’m not dehydrated, it takes about 2 hours for the bag to go in. At his office, it took a little over an hour. Half way through the Lactated Ringer, I was feeling much better. They took my blood pressure and it was lower than it normally is – so my best guess is that I was dehydrated & a little low on pressure – and that caused the severe light headedness.
I am feeling much better now. My temp got up to 100, but now it’s down to 98.7. That’s much more manageable feeling. It’s time for my next IV dose. I am terrified, but I have a few things in my back pocket to hopefully reduce the herx reaction this go around.
This is a song I listen to when I’m feeling rough and need a little pick-me-up.
This is what I call the tough IV week. Last week was more tough oral antibiotics, but this week is tougher with the IV. I began IV Cipro this morning. It kicked my butt. I had major twitching episodes. It also caused some serious nausea. Fortunately I took some precautionary medicines before I went in for my first dose. I now know I need 2 tabs of Zofran before the Cipro infusion. As I sat in the green chair resting as comfortable as you can in a chair, I just tried to imagine I was somewhere else doing anything else. It didn’t help much.
My picc line arm looked a bit better. It was still irritated, but the blistery bumps weren’t distended. It was only a little bit oozy. We did another dressing with sterile gauze under it. I’ll go back on Thursday and hopeful they’ll be even more dried up.
On January 2nd, I went in for a dressing change. I noticed one small tiny bump under the stat lock. I told the lady that changed it that it starts out like that, but can turn into a red/blistery/oozy mess quickly. She did the change as protocol for me and I came back the following week.
On January 9th, I went in for a dressing change with a different lady. She noticed a few bumps under the stat lock and I looked and saw that it was more inflamed than the week before. We decided to use just a simple foam strip to secure the picc line and return to see how things looked the following week. She had planned on ordering the specialized securement device that the insertion team recommended. In addition, it was difficult to get the stat lock off my arm. This caused even more irritation. I noticed some itching, but it wasn’t enough to keep me awake or drive me bonkers.
On January 16th, I went in and the bumps had not gotten any worse, but not much better. She used the new securement device and I went on my way thinking the next week it would be improved.
On January 23rd, I went back and there were still some bumps and irritation. Since she didn’t want to put on a stat lock and she hadn’t had a chance to order the new type of securement devices, she put on a strip of sterile foam tape and I went on my way. By Saturday, my arm was itching. By Sunday, it was itching worse. On Monday I went in for an IV therapy and told her it was itching – but I’ve had worse (and that was true).
On Wednesday -I noticed a very small patch of brown on the dressing near where the foam tape was. I pushed it out of my mind since I was going in the next day and got a message that doctor’s office would be closed on Thursday due to dangerous road conditions. My appt was rescheduled for this morning.
I told her it was bothering me a lot and I wasn’t surprised when she pulled off the MeFix dressing. There were a lot of irritated bumps and it was oozing. 😦 I should have trusted my instinct on Monday to have her change it, but the office was so busy there wasn’t time. After she cleaned it this morning, I had her put on a small piece of sterile gauze on the bumps so that the adhesive of the MeFix wouldn’t irritated it any more. She’ll change it again on Monday.
I certainly don’t want to go through the irritation, oozy, blistery mess that I went through the last time I had a picc line. Hoepfully things will settle down. I ordered the new securement device and hopefully my arm will be healed enough to use it by Thursday when I go in for my dressing change. 3 dressing changes in one week when your arm is irritated is so painful.
Living the Lyme Life 