Keeping Cozy

Today’s post is a bit shorter than most, as I haven’t been feeling well.  With pain top of mind today, I wanted to touch on what clothes I find the most comfortable on bad pain days.

When I’m in a lot of pain, the texture of clothing is a big thing that helps me.  Though it doesn’t reduce my pain, soft, smooth, flowing fabrics help reduce any additional pain.  Two of my favorite shirts are cotton/polyester blends that have been worn and softened through washes for years.   When it’s colder, flannel button-up shirts are another go-to of mine.  Especially with my powerport, button-up shirts are one of my go-tos for infusions and long hospital stays – definitely more comfortable than a hospital gown and it still allows people to my port site.  I also wear a Christmas sweater (around the house) all year round because it’s so comfortable!

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Though not flowing, I have also found a pair of soft leggings that have good coverage that I love.  When I moved to my current company a few years ago, I took advantage of their casual dress-code and bought 6 additional pairs – so I could wear them all week.  If I’m not at home in my sweatpants, I am wearing leggings with a soft shirt and a sweater.  Though I still have a few pairs of jeans, I prefer not to wear them because my skin has been much more sensitive to rough fabrics.  Ever since I began showing fibromyalgia symptoms, my skin hurts when wearing rough fabrics – even with my sweatpants when it gets really bad.  The stretch of leggings is also more forgiving and as comfortable as possible when I’m distended.

What is your favorite thing to wear on bad pain days?  Why does it help you?

The Adventure of My Port & Me

February is my Portiversary month!  I have a single lumen power port that was placed two years ago.

Once upon a time, I had good veins that nurses were able to access.  After the many IVs started during my hospitalizations over the four months I had c diff and received multiple potassium infusions (which hurt like crazy) and other hospitalization for my ulcerative colitis, I became quite the hard stick.  The journey to getting my port began during my final loading dose of Entyvio.  On a Friday at the University of Michigan infusion center, five different nurses tried to start an IV a total of six times.  They brought out all of the tools in their arsenal and were still unable to get one started.  The infusion center was closing in less than hour, and I was told that I would need to reschedule my infusion.  Since I am not able to infuse during the week (except for Friday afternoons) due to the way Entyvio affects me, I was quite concerned at the idea of waiting until Monday for my infusion, and the effect it would have on the rest of the week.  Though this is not something that is typically done, one of the nurses was able to schedule my infusion for the next day in the hospital on the Thoracic Intensive Care Unit (TICU) floor in a small infusion room.  This floor had a dedicated IV nurse who thankfully was able to access me in one attempt – using a vein that had never been accessed on the back of my arm.

After my loading doses had finished, my infusions were moved to a center closer to my home.  During my first maintenance dose, there was similar trouble getting an IV started, but since there was more time, they were able to get one started after an hour or two.  Though we had thought about a picc line or a port after the U of M infusion, this is where the conversations truly began.  My favorite nurse at this center was working that day, and she sat down with us to discuss both options in more detail.  With my infusions being every 8 weeks, it was decided that a port was the better option, as it could be deaccessed between infusions.

I brought this up to my gastroenterologist, and he was in full support of a port and referring me to a surgeon – as long as there was evidence the Entyvio was working.  We scheduled a colonoscopy and my first upper endoscopy – as this GI thought I might have misdiagnosed crohn’s instead of ulcerative colitis.  During this scope, my colon looked the best it ever had since diagnosis!  Because of this, my GI’s office set up an appointment for me with their recommended surgeon.  The consolation went great and he made me very comfortable with the procedure.  He even gave me a port that I could look at to get an idea of what would be going into my body (Honestly, it made me think of a mouse! Haha).  He was able to get me on the schedule before my next infusion – which was great!

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The day of my surgery, I was quite anxious, and since they wouldn’t allow my now husband to come back to the pre-op area at first, my anxiety was heightened.  While in pre-op, I debated with my husband whether or not I wanted to do this surgery.  (Spoiler alert:  I am extremely glad he encouraged me to follow through.)  When starting my last peripheral IV, the nurse injected lidocaine in my arm but I could still feel her digging and having a rough time finding the vein.  They ended up giving me two doses of a calming/anti-anxiety medication through my IV, before the surgeon came in the room to talk to me.  After speaking with him, I agreed to move forward with the surgery.  He did say he would check back in with me before I was wheeled down to the operating room, and when he didn’t, I started having a panic attack as they were transporting me.  They ended up giving me a third dose right as I began talking to the doctor and then they pushed the anesthesia.  And then I woke up with a port!  It was not my finest hour nor my proudest moment, but I am so glad that I pushed through the anxiety because the end result has made my life so much less stressful, as well as reducing my anxiety when going to infusions and hospital trips.

During recovery, the site was painful for a bit, but that didn’t last long.  Most of the discomfort was due to the skin being stretched out over the port.  I wore loose tops for the first week or so as that helped lessen the discomfort.  I did ice the site many times throughout the day.  While I was healing, I did somehow pull one or two of my anchoring stitches (the silicone on the side of the port is used to anchor it in place), which wasn’t uncomfortable for long and the only lasting effect is that my port shifts a bit if it’s not being held steady while accessing.

My first infusion with the port – and every infusion after – went splendidly.  I used to always dread infusion days even though it made me feel better because I knew what an affair it would be to get my IV started.  For my first few infusions, I did use the Emla cream prescribed, though I haven’t used it since.  It helped make me more comfortable as I was getting used to the port, so I would definitely recommend it.  One of my nurses suggested covering the Emla cream/port site with the Press’n Seal cling film, which worked very well. If you have IBD and are talking with your doctor and/or a surgeon about getting a port, I would suggest asking it to be placed on your right side.  Mine is placed on my left, and though I was still able to use it, it made things a bit tricky at my colonoscopy last month, as patients need to lay on their left side for that procedure.

Port Accessed

Caring for the port is pretty simple.  Thankfully, since the port is under the skin, there is not much risk except when accessed.  I am able to shower, take baths, or swim without having to take special precautions.  Since my infusions are only every 8 weeks, I get my port flushed and locked with heparin every opposite month.  When I do have a fever or other signs of infection, I have to have blood cultures taken from both my port and a peripheral site to verify that there isn’t an infection in my port.

Whether you have a port, picc, or get regular IVs, you know your veins best.  Advocate for yourself, and when you’re getting a peripheral blood draw or IV, assert that nurses access only the veins you’re comfortable having accessed.  I often have nurses insist that they can get a vein that many nurses before them haven’t been able to successfully access.  I have reached a point where I now stand my ground and only allow them to draw blood or start an IV on select veins.  Thankfully, many nurses I have encountered have the mentality that I know my body best.  I still come upon the occasional nurse who fights back, but I ask for another nurse in those situations.  I really stand my ground because that’s what’s best for me and my body.

Slug blood

Now that we’re a couple of posts in, I thought it would be a good time to regale you with a tale of one of my many misadventures.  Since I’m on a biologic and methotrexate, my rheumatologist has instructed me to go to the Emergency Room for labs, blood cultures, a urine culture, and sometimes a chest x-ray any time I have a fever.

One day this past summer, I was feeling really dizzy and had a temperature of 102.5*F.  A doctor at my local ER ordered all the tests above as well as fluids.  Since I have a medical port (which I plan to discuss further in a later post), I have cultures taken from my port and a peripheral site.  The nurse cleaned both sites before collecting the samples.  They kept me overnight for precautionary IV antibiotics and discharged me the following day.  Blood cultures take about 5 days to receive results – at least in my hospital system.  During this time – and until I got a negative culture – I was not able to take my immune suppressants.  Because of this, my pain and other symptoms increased.

I received a call the following week letting me know my peripheral culture grew, but it could have been a contaminated sample.  They wanted me to return to the hospital to repeat both blood culture samples.  I was initially admitted, but I fought to be discharged as the culture wouldn’t be back for days and they did not have a care plan in place.

The results for the second culture were released during an appointment with my rheumatologist, so she gave me the news.  This time, the sample from my port is the one that grew.  The bacteria were found to be Moraxella osloensis – a mutualistic symbiont of a slug parasite.  Since this was way out of my doctor’s wheelhouse, she called one of her friends who is an infectious disease doctor while she was still in the room.  Neither could figure out how this bacterium was introduced into my central line and the other doctor wasn’t able to get me on her schedule until 7 days later.  There were concerns from all ends of what would happen if it were in my blood and if my port would need to be removed.  Back to the hospital I went…

During this trip, I had one of the best nurses I’ve ever had.  She was unbelievably understanding and wanted to make sure this was the final round of my blood culture battle.  She wiped down both areas multiple times to avoid any contamination.  She also used a pediatric blood culture set for my peripheral draw, as it wasn’t giving her much of a sample and she didn’t want to have to poke me again.  As I said, one of the best nurses I’ve had.  Thankfully both samples came back negative for any growth, and I was in the clear to begin taking my medication again!

Being off of my meds for about 20 days was very difficult, as I’m sure you can imagine.  When getting cultures since, I always make sure they wipe down the area thoroughly twice to avoid a repeat of this situation, and so far, it’s worked! (Fingers crossed!!)  Please learn from this, and never be afraid to speak up.  You’re your own best advocate!

And still no answer to the slug-killing-bacteria contaminated sample…