Skin Sensativities Solved!

My skin has a way of baffling the entire medical community with it's absolute refusal to accept any type of adhesive to touch it for any period of time. And sure, there are people who are sensitive to adhesive and even  people who complain about rashes from Tagaderm or other adhesive bandages, but I have yet to find another human being whose skin is as picky as mine. I have dozens of blog posts on the subject that can be found here, but I must warn you that some of the pictures are rather graphic.

To be fair, my skin is actually pretty easy going in most areas of life. I have zero allergies to any other products I have ever used anywhere on my body. Lotions, creams, sun screen, detergent are all fine by my skin, but for some reason the more PICC lines, IVs and port dressings my skin comes in contact with the more it revolts. And we have tried everything! We have talked to NICU nurses and burn centers and tried dozens of types of coverings to no avail. 

Well, we have finally discovered the perfect solution for all my skin troubles. The only solution we have found is the one and only Prednisone! I know, I know not an ideal solution, but 10 mg of prednisone kept my skin reaction at bay enough that when I got my dressing changed yesterday there was no swelling, no oozing blisters and my skin looked 100% intact.

There is such a huge amount of relief knowing that I can get through IVs without dealing with weeks of itchy, irritated and swollen skin. The only downside is that Prednisone elevates my blood sugar just enough that I have to be careful of what I eat. Now, this wouldn't be too bad except that it seems October is prime IV time for me given my history. This means that not only is Halloween candy off limits, but October is when all of my fall fruit is ripening on the trees. Pineapple guavas, lemon guavas, persimmons, pomegranates all taunt me with their high sugar content. Sigh! But as the saying goes: Beggars can't be choosers!

Scars

Spring was starting to appear in all the trees and flowers, and skies filled with birds. But the chill of winter was lingering and as the day started to fade to evening, Kaylee and I snuggled close together under her covers to stay warm.

Kaylee held the book in her hands and she sounded out words and read the pages to me. A new skill learned in kindergarten. As the evening grew later she started to get weary, "Can you read now?"

I took the book from her hands and sleepily started reading where she left off. She listened quietly for a few moments when her little pointer finger came up and traced the inner parts of my arm. Interrupting our bedtime story she asked,
"Are these freckles mommy?"
I looked to where her little finger hovered over the marks inside my arm. Old PICC line scars that were long forgotten.
"No, those are all the spots that the doctors used to give mommy medicine when her lungs needed help."
"Oh, like your port?"
"Yes, similar to my port."
A few moments passed as she touched each scar, looking intently at each one.
"Look, these spots look like Orion's belt. Your spots make a constellation! How lucky!"

And just like that my scar covered arms became beautiful skies sparkling with stars and constellations.

IV Party Tricks

I meant to write this a long time ago, but obviously didn't so here is goes several months later:

I joined a neighborhood book club almost a year ago. At the time I was still in the process of getting to know the ladies in the book club as we only meet once a month and I had only been to a few meetings. When I arrived at the home of a fellow book club member I joined two other ladies at the kitchen table where everyone was chatting and eating appetizers. As we were waiting for the rest of the ladies to arrive we were all talking, but it was clear the hostess could not focus on the conversation and something was distracting her. Her eyes kept darting around the room and she kept standing up as if to go somewhere, but would seem confused and would quickly sit back down. She finally stood up and said, "I am sorry, but I can't figure out what that noise is!" We all fell silent for a second when the other guest confessed she had heard it earlier and thought the noise was just kids playing outside. The hostess seemed to accept this theory and sat down again. As more people arrived the hostess brought up the noise again. I was embarrassed because I could not for the life of me hear this noise she was talking about. I started to wonder if some of my previous IV meds had damaged my hearing. Everyone else, however, could hear this strange noise that some compared to the "sound of a dying battery in a kid's toy" as another chimed in that it sounded like an "electric drill." As the conversation continued I felt more and more uncomfortable. How could I not hear this noise that clearly was distracting to so many others?

Finally, we moved on from the mystery noise and continued on with chatting and snacking. At one point the room fell silent momentarily and as the chatter died down I finally heard the noise that perplexed everyone else. I could feel the blood drain from my face at the exact moment that I realized this unexplained noise was coming from me! I had to sheepishly confess to knowing the source of the mystery noise. The room fell silent and everyone shifted their focus to me. I pulled open my purse and pulled out my CADD pump which made a strange drilling noise each time it dispensed my zosyn which happens about every 90 seconds! I admitted that after hearing my pump go off every few seconds 24 hours a day for 14 days at the point of the party, that my brain had no longer registered the noise in order to keep my sanity.

Needless to say my book club now knows all about my CF and how annoying a CADD pump can be!

Matching Nightmares

I shuffled to the kitchen, turning on the coffee maker, waiting for my body and mind to catch up to the chatter coming from Kaylee, sitting at the kitchen table. The sun still hadn't made its way to our kitchen window sitting above the sink. A loud yawn enters the kitchen before my sleepy husband makes his way into the room to join us. The coffee grinder fills the cozy room with too much noise for conversation. I wait for the grinding to stop, replaced by the sound of water filtering through the fresh ground beans to say, "I had the worst dream last night." I hand the warm, steaming cup of coffee to my husband, pushing the grind and brew button again.
"What did you dream?" He inquired, sipping his coffee.

I went on to explain the dream I had (some said in code or miming to shield the little ears at the kitchen table). My port was accessed in my dream, but rather than the normal Huber needle and tubing, a tube as thick as my thumb was hanging directly from my port. I went to change the IV bag, but realized when the bag was removed I had nothing to clamp the open ended tubing. In a bizarre turn of events, my port became a vacuum, sucking air from the room into my port. This was a terrifying discovery as too much air pushed (or in this impossible case, sucked) into a port can lead to death. I shouted to my husband to grab some empty syringes and as he quickly unwrapped them I frantically tried to pull air from my port, until I saw it draw back blood, proof the air was removed from the internal tubing of my port. However, every time I removed the needle my port vacuum continued to suck up room air. It was a never ending cycle of pulling the air out of the tube, only to have it suck back in. The dream ends unresolved, as dreams often do.

My husband seemed a little more surprised by my dream than I expected. I have been known to have very vivid and bizarre dreams and this, although not my happiest of dreams, was no more or less bizarre than a pretty typical dream for me.
My husband's eyes grew wide and he told me, "I had almost the same exact dream two nights ago!" His dream differed slightly in that my tubing was cracked which was the cause of air getting into my port, but still the basic theme of a port filling with air and certain death was the exact same.

I guess when you have been married long enough even your nightmares start to match!

Missing Butterflies

I have been posting so many boring health updates so I wanted to share a cute story for a change.

My four year old hates when I get IVs. She calls my accessed port "the tube" and there seems to be nothing she hates more than when I get "the tube." The last few times I needed IVs I was in the hospital so she equates IVs with mommy leaving.



Here is a picture of the butterfly after we de-accessed.
No matter how many times I took this photo
it came out blurry. Sorry!  

My doctors agreed I could do home IVs this round of IVs (before we knew how disastrous it would all turn out) and I was hoping that would change Kaylee's feelings about "the tube." When my port is accessed the safety on the needle (the part that helps slip the needle into a sleeve when it is pulled from the port so that nurses don't stab themselves with my used needle) resembles a butterfly. So I tried to rename "the tube" to "my butterfly" to take away some of the fear she has put around my IVs.

Unfortunately, she still hated my butterfly and asked me daily when it would go away. After 21 days my husband pulled off my dressing and Kaylee watched as he pulled my port needle out of my port. We all cheered because it signaled IVs were done (even though it was bittersweet for me because I didn't feel any better). As I turned to look at Kaylee I saw her eyes full of tears, "Can you just wipe my blubbly eyes, mommy" (blubbly is what she calls her eyes when they are full of tears. It makes no sense, but she has been doing it since she was really little so it has become a real word in our household). My heart sank. I thought she would be overjoyed that my IVs were officially done and yet her eyes were full of tears.

"Can I ask why you are crying?"
The tears started flowing the second I said those words.
"I am going to miss your butterfly!"

I guess the end of IVs was bittersweet for Kaylee too. Sure, the dreaded tube was gone which meant fewer doctor visits, less restricted play with mommy, and no crazy IV schedules, but it also meant her beloved butterfly would be gone.

Port Flushes

I am not going to lie, sometimes having a port is a pain in the butt. Mainly trying to coordinate port flushes when you have a toddler, a husband with an insane work schedule, and life in general. This past month was the worst as schedules kept changing and I had to call and reschedule my appointment twice only to have my husband tell me that the final time I decided on didn't work either. I was approaching 6 weeks without a flush and decided that I could not risk another week and brought Kaylee with me. I couldn't get anyone to watch her and she really is such a mellow kid I figured it wouldn't be a problem.

Poor little Kaylee fell asleep in the car. I had to pull her sleeping body out of the car into the bright sunshine and carry her to the somewhat busy cancer center. She was awoken by the shuffle of the center and was groggy and disoriented when I signed in. The receptionist looked at Kaylee and asked if I had someone to watch her. When I told her I couldn't get childcare she explained that they don't allow children under 13 back where chemo is administered and a nurse would have to come and watch her while I got my flush. My daughter is social and quite charming, but she is not the type of child that will gladly leave mama to go to a stranger. In fact, I was positive hysterics, especially given her sleepy state, would ensue.

And just like that, I cried. Not in front of the receptionist, but in the waiting area. I am really not an emotional person so I surprised even myself, but there I was silently crying in the waiting area. I just felt bad. I felt bad for making my baby miss her nap, I felt bad for dragging her to so many appointments, I felt bad some stranger was going to take her from me, I felt bad that I have been so sick for so long which effects my energy level and my mood with her, I felt bad that CF already inconveniences her life so very much. I guess it all built up and poured over in that stupid cancer center waiting room. Luckily, only one person witnessed my moment of weakness and he uncomfortably avoided eye contact with me. I guess if you have to cry a cancer center is a pretty common place to do it.

By some act of kindness the nurse assigned to me snuck Kaylee back with me and we sat side by side in the infusion chair. Kaylee read her alphabet book, telling both the nurse and I what each letter was and what picture was on each page. At one moment she looked over at the nurse working on my port and said in a matter of fact tone, "clean, clean mama port!" She went on "reading" to us until my labs were done and port was "clean clean".

Kaylee reminds me over and over again that even when I feel bad for putting her through so many things most *almost* 2 year olds never experience that she is just happy to be with mama. She finds joy in life whether in an infusion chair or a busy doctor's office. She reminds me small children are resilient and can easily find joy and excitement even in the most boring situations. She is helping me to notice the beauty in all of life's experiences both good and bad. Everyone knows a mother spends her life teaching her children, but children teach their mothers the most important life lessons.

Chestne

Chestne...ever heard of it?? You know, it is like acne, but all over your chest. Well, that is apparently what I currently have all over the right side of my chest except that I don't really have chestne. It is a rash that resembles chestne from my port tape reaction from a month ago!! Apparently, skin reactions on your chest take a heck of a lot longer to heal than those on your arm. My blisters are gone and my skin is now smooth, but in their place are tiny red dots, everywhere! I sure am glad it is still winter..except that it is almost 70 degrees outside.

I know, I know, you wish you could be me!

Port Problems

My hospital stay was only supposed to be four days maximum, but due to many issues including a long holiday weekend my departure kept getting delayed. Tuesday morning, when my insurance company office was open again, I was given the approval to get home IVs and was preparing to go home. All of the sudden a doctor walks in (during my treatments) to talk to me. He started explaining how a port is inserted and that ideally a port tubing ends in the superior vena cava, just upstream of the right atrium (at this point I am wondering why the heck he is telling me this since I got my port 2 months ago). He then went on to tell me that mine was significantly lower in a place that could cause life threatening problems. 

Needless to say, I was speechless. I have had the port for two months with no mention of any issues. I also did not understand how radiology, who used imaging to place my port, could have placed it too deep. The doctor told me that if I choose to have the port removed and then put back in they would try to get me in as soon as possible, but that it would delay my discharge. My head was spinning! Here I was getting all ready to go home and suddenly I am facing an unexpected surgery. 

I started processing out loud to the doctor (resident?). I don't understand how two months passed without any mention of this issue. Why did radiology not see this when they did imaging after the placement? The doctor (not my CF doc) explained that the pharmacy looks at all x-rays of port and PICC placements before issuing home IVs and they are the ones that noticed the port placement issue and refused to send IVs since they deemed using the port as unsafe.

I was now even more confused at this point! What x-ray did they get this info from? The doc left to investigate more. He came back and said they were send X-rays from an outside facility. Now I was baffled! I have not had any x-rays since 2008 (all in the hospital) and my port was placed 2 months ago so what x-ray could they possibly be looking at. The RT in the room pulled up my x-ray history. I asked him to check my last x-ray and to see if I had a PICC placement in that x-ray. Sure enough, my last x-ray was 2008 and I did have a PICC. 

This new informatin brought a huge sense of relief. There is no way they were looking at the correct imaging of my chest 2 months ago because it simply does not exist. I am assuming my PICC placement in 2008 was too deep and they were not looking at my port, but rather at a PICC placed 6 years ago! Someone at the pharmacy needs to check dates before giving such information. And the doctor (who I believe was a resident) should have done his homework before coming in and scaring the crap out of me.

We did an x-ray in the hospital just to confirm the placement of the port and sure enough my port was just fine. So after all that stress and confusion I am happy to say that my port problem is not actually a problem at all!

Skin Problems With The Port

I have had my share of skin issues and allergies with my PICC line so it was no surprise that the skin around my port would have issues too. The second night of my hospital stay I was snuggling in bed with my daughter when she got tangled in my port tubing and accidentally pulled the port needle right out! I called the nurse expecting her to re-access it with no problems. What I didn't notice was that my skin was already reacting to the new hypo-allergenic tape we were using.

The nurse took one look at my skin and was convinced I was allergic to Betadine (I AM allergic to Chloroprep so we use Betadine to clean my skin) since we were using hypoallergenic tape. I tried explaining over and over that it was the tape since I am allergic to essentially all tape, but for some reason she was certain it was the Betadine. She went to talk to some other nurses and doctors (it was evening so my doc wasn't available) and they all agreed that they had to use either chloroprep (which I am allergic to) or Betadine to clean the access site and until they knew that Betadine wasn't causing the allergy they refused to use it on my port.

This left me annoyed because I know that I am not allergic to Betadine, but nobody would believe me. They agreed to cover a few patches of skin with Betadine to see if I reacted. They also placed an IV using the hypoallergenic tape (that I knew was the culprit) with the intention of checking it the next day for a reaction.

Of course, the Betadine did not react and my IV site (using the hypoallergenic tape) went crazy with blisters. When my doctor came in he brought two new types of tape that we decided to try. I think we have found two solutions for now!! We cover the port with several layers of sterile gauze and then tape the gauze down with Hy-Tape or Kind Tape (pediatric). I am so relieved to finally have a tape that does not make my skin blister.

Port Surgery Part 2

I have been dragging my feet with writing this post, but I really want to get it down on paper. After deciding on getting my port I read a lot of blogs about port surgery, but most of the bloggers were cancer patients and most of them were completely sedated for the surgery. My two biggest concerns were not answered: what was it like to have surgery while awake (but loopy) and what would airway clearance be like post surgery?

Part One can be found here.

I was wheeled into the operating room and the nurses were talking to me while they strapped me down to the table. They put something in my IV line to make me sleepy, but as the moments went by and I was still chatting away, one of the nurses looked at me and said, "That did absolutely nothing for you, did it?" Realizing I was not in the least bit sleepy they gave me a little (or a lot?) more. The nurse told me not to fight the sleepiness and the next thing I knew I was out. I remember being awake for parts, but I think I was going in and out of consciousness. At one point I remember the doctor saying she had created the pocket for the port. I also remember being shoved pretty forcefully back and forth. I am not exactly sure why (I don't think I want to know) and am not sure if these feelings were exaggerated by my loopiness. I told them at one point that it hurt a lot. I am not sure if they gave me more sedative, but I remember nothing after telling them of the pain. I will say despite being pushed around and in pain I was 100% content. Even though I felt pain it really didn't bother me and my telling them was more informative rather than out of concern. I am pretty sure they could have said, "Suck it up, wimp!" and I would have gladly said, "Okay." So all of my fears of being scared or worried while in surgery were wasted energy.

I woke up towards the end of surgery and remember being wheeled into recovery. I also remember them telling me my PICC was coming out and watching the nurse pull the line. After that I have no memory until I got home. I have no recollection of leaving the hospital or the drive home at all which still weirds me out.

Recovery was better and worse than I anticipated. I was in more pain than I expected. Laying on my side hurt and certain movements hurt. However, my airway clearance did not cause any pain at all (although I did avoid the Vest).

I have had the port for over a month now and it is actually a huge relief to have it put in. The process of getting a PICC placed with my scarred veins and all the complications that came along with the PICC should (hopefully) be a thing of the past and next time I want IVs one small prick should do the trick. I sure can't complain about that! Now the whole skin allergy aspect is a whole different story..

Port Surgery Part 1

My port surgery was scheduled for Wednesday morning at 10:00. It was the only time they had available and although I was glad it was in the morning I was really nervous about fasting that long! As a cyster I am used to eating a big breakfast and knowing how slow hospital are I figured I would not be in surgery until lunch time which meant I would be desperately hungry!

Luckily, chasing a 16 month old kept me busy enough that I wasn't able to get too nervous about the upcoming procedure. Around 9:30 my mom showed up to watch Kaylee and my husband and I headed over to the hospital where my dad met us in the waiting room. Unfortunately (or fortunately??) I am very familiar with the waiting room since I get my PICCs in radiology so I have spent a little too much time in those worn out chairs. However, today was the first time that I walked into an empty waiting room! I thought that maybe, for once, things would move quickly and everyone would be on time. I should have known better, when has a hospital ever been on time?

I was brought into pre-op and quickly realized I have spent too much time in radiology because every single nurse already knew me, knew I had CF, and knew I was a hard PICC placement. And when the radiologist came out to talk to me about the procedure, she knew me as well! In fact, she placed my last PICC and even remembered our conversation during my PICC placement.

Soon after being brought back they were getting ready to hook up my IV. Since I already had a PICC they decided to use that instead of starting a new IV which oddly enough was such a huge relief. I don't mind needles, but if you don't have to be stabbed, why would you? It also made me feel, despite not actually using my PICC, the daily dressing changes, lack of showering, and the obscene amount of gauze wrapped around my arm for the last week was actually kinda worth it...or maybe not. They gave me a dose of antibiotics (preventative in case bacteria found its way in during surgery) and explained the procedure to me. I then waited and waited and waited (shocker, right?).

I was asked by several nurses if laying flat was a problem for my lungs (which luckily it is not an issue at all for me), if I had ever been intubated (eek, no!), and how my lungs handle being put under (who knows??). They were clearly being cautious about my CF which started to make me nervous. I really had no idea how my lungs would react since the last time I was put under I was 14 and was significantly healthier than I am today. My oxygen levels were fine and the radiologist said I was moving air nicely so I figured all would be well. Right?

After waiting an obscene amount of time they finally wheeled me into the operating room...

My Very Last PICC

Last month I had what I believe will be my very last PICC ever (portacath here I come!). And like all my PICCs this one went in with a fight. This time, I did not have a resident place the PICC and the radiologist did not tell me that I should not be nervous because it makes her nervous. In fact, the radiologist was one of the nicest medical workers I have ever come across. The PICC placement however, was not so nice.

I went directly to radiology to have my PICC placed because the PICC nurses won't touch my arms anymore. After waiting an obscene amount of time, even for a hospital, I was finally brought back for placement. All seemed normal, I was prepped, the lidocain was injected and I felt the usual pressure and the distinctive, "Pop!" sound of the catheter pushing its way through my skin. And then another shot of lidocain which meant the first location didn't take. Rinse, repeat and repeat and repeat...

It felt as if time was dragging on forever, I lost track of the "Pops" and the radiologist was apologetic and so kind for having to poke me so much. I was having vasospasms which is when your veins clamp down because they are stressed out. I figure my body, being poked over and over, assumed I was being attacked and decided to clamp down to prevent blood loss. The problem is I was not being attacked by a bear or killer shark and I was not at risk of losing too much blood, I desperately wanted my veins open so the blood would flow and the wire could find its way to that magic spot above my heart. But my body, confused and misguided buckled down and demanded a fight.

The radiologist noticed that even with lidocain my veins would spasm so she decided to try the last one without lidocain. Luckily, I was partially numb and so over laying on that table I didn't care. Thank goodness the wire went through and we all cheered. At that moment I decided that I would never get a PICC again if I could help it and that I would call my Dr the very next day to schedule a port placement once I was done with IVs.

Too bad my crazy PICC story didn't end there...