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!

Mysterious Exacerbation

For my own record keeping and to potentially help others that may find themselves in the same situation (even if it is just for the comfort in knowing others go through long bouts of struggle with CF too) I really wanted to be better about keeping this last (exhausting) exacerbation well documented. However, living with the complications of CF everyday can be mentally and physically exhausting and despite finding this blog as a way to release some of the frustration and thoughts that surround CF I often find that while I am in the thick of sickness taking up mental space to write about it can feel like too much. And so this is a quick breakdown of this last complicated exacerbation, which I might add, is not over.

 June 13^th: Despite feeling relatively well most of the summer I blew a disappointing 34% at clinic. Was given 2 weeks of Cipro.

July 5^th: Called to ask for stronger meds as Cipro wasn’t enough to make me feel better.

July 13^th: Started IV Zosyn in hopes of it doing the trick.

July 18^th: After 2 weeks of orals and one week of Zosyn my FEV1 dropped to 28%. Decided on doing 3 weeks of Zosyn total to hopefully kill off more pseudomonas.

July 25^th: Feeling better although not great, but my skin started to react to my port dressing. Started Prednisone to contain my severe contact dermatitis due to all adhesives.

July 6th: Went to the ER with a suspected clot. No clot was found!

August 1^st: Felt like death (virus? Cold?) and blew 31% in clinic. Decided that pseudo wasn’t the culprit to my sickness (it is sensitive to both Cipro and Zosyn) and tried treating other bugs that may not show up on my culture.

August 3^rd: Had an allergic reaction to Zosyn and woke up covered in hives.

August 12^th: Started Bactrum and Rifampin for 10 days. No progress

August 27^th: Started Levoquin and Minocycline and am currently crossing my fingers this cocktail works.

 After two months of antibiotics I still looking for the right antibiotics for what is causing my lung function decline, fatigue, and afternoon fevers that do seem to disappear while on antibiotics, but instantly come back when antibiotics end. CF can be such a frustrating disease and I hate when these exacerbations seem to turn into months rather than weeks. I am hoping that I can get things under control before cold and flu season begins. I have already started stocking up on hand sanitizer for this winter.

 

This Skin

A few days ago I explained the process of getting desensitized to IV antibiotics. While in the hospital I had heart monitors connected to my chest 24/7. If you have followed my blog at all you know I have very sensitive skin when it comes to adhesives. So it should come as no surprise the heart monitors (all 5 of them) gave me these nasty blistering welts. The picture to the right is of my lower rib cage after I removed the monitors. The blisters are hard to see, but they quickly developed and boy were they itchy! I have been home from the hospital for almost a month now and you can still see where all my monitors were by faint little red circles dotting my torso.

And as if that wasn't bad enough check out the little red bumps on my arm (they are subtle and easier to see towards the underside of my arm in the pic) where the blood pressure cuff was for the entire three days. The blood pressure cuff!!! No tape, no adhesive, nothing!! I think the combination of the cuff being on the same part of my arm that my old PICC lines were placed didn't help because that skin has become insanely sensitive since my bad PICC experiences. Although this rash faded within a few days I was confused as to how I could possibly react to a blood pressure cuff!

I still find it perplexing that outside of CF medical experiences my skin is not sensitive at all. I have never had a reaction to detergent, soap, lotions, anything! I have normal skin, but the second I have some sort of medical tape, adhesive or a constant blood pressure cuff on my skin it starts reacting.

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!

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.

Calming The PICC Reaction

Start here to follow my most recent PICC dilemma.

So the nurses and I are looking at my angry arm and trying to figure out what to do. At this point I had only received 2 days of IV antibiotics (I had the PICC one day before my IVs arrived) and I had 12 days of IVs left. We knew that if this reaction progressed like the last PICC I would never make it the 12 days. I felt like I was in the same position of deciding between the health of my lungs and the health of my arm. 

My dad, knowing how bad my PICC line reactions get, was researching without my knowing. He has access to a lot of medical journals and studies that the average public doesn't so he put it to good use. He found a few articles and brought them up to my PICC nurse. (You are never too old to be "rescued" by your dad). At the same time I begged for steroids- topical or oral. We followed the protocol my dad had researched and the doctor prescribed a topical steroid. 

We cleansed my arm with sterile saline and used alcohol only on my line and insertion site as to not irritate my skin anymore than it already was. We then covered the skin around my insertion site with topical steroid (with sterile q-tips while making sure not to contaminate the steroid cream which was also sterile). We used steri strips to hold the PICC in place despite the fact that they irritate my skin, but I needed something holding the PICC in. They then covered my arm with (sterile) Vaseline gauze because the regular gauze was sticking to my blisters causing the skin to tear off with each dressing change. We then covered my arm with sterile gauze and finished with coban. 

Within a few days my arm started to improve which was a wonderful change from last time when each dressing changed revealed a more damaged and angry arm. I actually started to get hopeful that I would complete the course of IVs without further complications to my arm which was a huge relief. The problem was that they needed me to come to the hospital for a dressing change daily. This proved to be a difficult task. They were open 9am-3pm and I needed to find childcare for Kaylee for my appointments. Since most people I know work finding someone to watch Kaylee for the 1 1/2 hours it took to go to the hospital was beyond stressful. Kaylee also learned quickly that I had to leave her everyday and she protested by becoming clingy and crying hysterically when I would leave which made it even harder to find someone to watch her. 

Somehow we made it work and I got through my 2 weeks of IVs (although I was allergic to Vancomycin and spent the second week covered in hives). Unfortunately at the end of my 2 weeks I caught a nasty cold which filled my lungs with mucus all over again. I did not feel as bad as pre-IVs, but I did not feel nearly as good as I should coming off of IVs. I was beyond frustrated and tried of being sick! 

I begrudgedly called my doc and asked for more meds and a Port. He gave me orals, and to my dismay told me to keep my PICC until my port was placed which meant more dressing changes and more time away from my daughter. They did change my daily changes to every 3 days since my PICC was not being used and my skin had healed relatively well. 

Nothing is easy when it comes to me, that is for sure!!

PICC Problems...Again!

It is no secret that my skin hates all things PICC related. I have talked about it here, here, here, and here, Oh, and here too! I have a severe allergy to pretty much all the tape they have ever used on my regarding PICCs.

PICCs have always been a huge headache for me and of course this last PICC line was no exception! Before this PICC my docs decided to cover my arm with all the possible tape they can use in a PICC to find out once and for all what I am allergic to. They even discussed my issue with the wound care specialists and the burn care nurses to find alternative tape choices. They also gave me a shot of lidocain and covered a patch of skin with skin protectant just to rule out all the things I could be allergic to. I was excited because once we got the results we would know how to keep my arm from turning into a heinous mess.

3 days passed and I had no reactions, not even one. Which I sort of expected since my reactions usually started several days into my PICC treatment, but it also terrified me. What if this test proved I was allergic to nothing? Then what? Where would we go from there?

By the end of the day my arm was a little itchy under the stat lock. I was instructed to pull off any tape the second I felt a reaction because of how horrendous my reactions get and how quickly they escalate. Sure enough as I pulled the stat lock off my arm the skin was bubbly, covered in puss and beet red underneath. I also noticed a slight reaction to the skin protectant. As far as tape, nothing reacted which was a huge shock for me. I was skeptical, but we decided to try a PICC with one of the "gentle" tapes that I did not react to and we would not use a stat lock, skin protectant, or chloroprep (which I already knew I reacted to).

The PICC was placed and all seemed well....for 3 days. And then, then the skin started to feel a little itchy so I called AIM. It was a Sunday, but they took my right away. Sure enough when they pulled off the gentle tape my skin was fire engine red, covered in puss, bubbly, blistery, a gory mess. We sat there dumbfounded. How did this happen again and what are we supposed to do now??

Finding Answers

Tomorrow I am finally getting assistance in finding some answers to my PICC problem. Apparently, my body is allergic to everything PICC related. The PICC nurses always assured me that this time, yes, this time they found a dressing that would not irritate my skin. As you can tell from the link above they are wrong every single time. In fact, my reactions keep getting significantly worse.

So tomorrow morning at 10 on the 5th floor on the hospital they are going to try to figure out what it is I am actually allergic to (everything??). I will be covered in the all the hypoallergenic, non irritating, gentle adhesives the hospital has to offer. I will be swabbed with all sorts of skin cleaning solutions (EXCEPT Chloroprep which is a death sentence to my skin), and I will even be injected with Lidocaine (apparently you can be allergic to the preservatives in it) just to see once and for all what it is I am allergic to. And if all goes well they will take what they learned to apply to my next PICC which should be placed early next week.

Am I pessimistic if I admit I am not 100% sure this will actually solve the problem? I swear I keep developing new allergies to anything PICC related. I worry we will find a solution only to realize five days in that I am actually allergic to it after all.

Clinic And Arm Update

Today was supposed to be the day I got my PICC pulled or was given a new set of meds, but of course with the PICC pulling itself out and my skin falling off I went in PICC free and extremely nervous. My arm is looking worse, I didn't get to finish my IVs and I had no idea how my lungs were doing. I also had to go with my zombiesque arm out on the open. I tried to cover it last night for family dinner at my parents house since I didn't think people would want to look at it while eating. I will spare you the gory details, but it was so not a good idea.

Within five minutes my appointment was already looking grim. Somehow I lost 4lbs between last Monday and today. How is it even possible to lose 4lbs in 7 days? I don't usually have an issue gaining or maintaining weight so this baffled my mind. I was eating a lot all week as I was trying to gain weight which makes it so much more frustrating. I am down to a skeletal 114lbs from 125. I knew my doctor would try to convince me to stop nursing, but I really believe that in a few weeks I can gain most of the weight back. Nursing is too important for me not to succeed!

My PFTs were making me the most nervous since I had to stop my IV course five days early. With my left arm covered in open sores and my right arm too much scarred to access I knew a PICC was out and I just didn't know what we would do if my PFTs hadn't improved. Luckily, my PFTs were just 2% under my baseline. Once I can swim again (when my arm heals) I think I can get back to baseline.

Pretty much everyone that saw my arm made the most horrendous face and said something along the lines of, "Oh, that looks horrible!" One of the nurses said, "I can't even look at it!!", but then kept sneaking peeks at it. Thank goodness the doctor knew exactly what it was. He even had another CF doc come in to get a second opinion and they both said the same thing. I was given a prescription for topical and oral steroids. I am already on Bactrim so that will take care of any infection that may be brewing. I go back in two weeks and if it isn't better they are sending me to a wound specialist. How scary is that!? I seriously hope that it improves with the steroids because nursing, sleeping, even carrying my baby is so much more difficult when I can't use my left arm.

So it looks like I am over the worst of my sickness. I now have the aftermath to clean up (get my weight back and heal my arm), but I can finally see the light at the end of the tunnel.

The Wreckage

**Graphic Picture! Scroll down at your own risk***

***I promise I won't post too many more gross pics***

Yesterday morning I wasn't sure how much more my arm could take. My blisters were oozing through my bandages and I was sleeping with towels under my arm. Barf, I know! So when I went to get a dressing change and the nurse said my arm looked worse than before I thought I was going to cry. Then came even more bad news. She noticed it looked like the external part of the PICC was longer than it was supposed to be. Sure enough, it was supposed to be 8" and it was 16". I knew at that moment my PICC was coming out. She called my Dr and of course he told her to pull the PICC. Part of me was so relieved that my arm would finally get a chance to heal. Part of me was terrified for my lungs. When I got home and assessed the damage of my arm I realized that I am so grateful for the fact that my line came out because my arm looked horrendous.

Obviously, I feel super attractive at the moment!

Later in the evening I started to notice my forearm was starting to swell. I pulled out my PICC packet of potential problems and the symptoms seemed to point to a blood clot. At this point I was pretty freaked out. After all the pain and trouble with my skin I couldn't imagine a blood clot. And of course my skin was almost non-existent so I couldn't even imagine how they would do an ultrasound over the open sores. I called the on-call pulmonolgist who told me to try warm compresses and to call the doc in the morning. By 2am I woke up (because I was hungry actually- good sign that I am feeling better) and noticed my swelling was pretty much gone. I think the swelling in my upper arm was draining (because of gravity) to my lower arm which was causing the swelling. My arm was a little red, but it is also itchy and irritated. So for now I think my PICC troubles are over and I just have to hope my lungs received enough antibiotics to be okay and that my arm will heal...eventually.

My Skin Vs PICC

**WARNING: Graphic photos of a skin reaction below. Do not scroll down if you are in the middle of eating***



In a battle between my skin and my PICC line my PICC wins hands down. It is funny actually since my skin isn't particular sensitive to anything else. I have never had a sensitivity to creams or lotions or detergent, but I apparently am very sensitive to adhesives. So after trying a new adhesive that is specially made for people with allergies to adhesive, I still got a reaction.

I have had my PICC two weeks now and we only had the adhesive on my skin for a few days before I started reacting. In order to try to let my skin heal we wrapped my arm in gauze for about a week. The problem was my skin was weeping through the gauze. Because of the excessive weeping we are trying duoderm (which is like fake skin) and then putting the tegaderm (tape) on the duoderm so it is still protecting my PICC, but not touching my skin. Here are the results:

Duoderm is brown, but as you can see it looks pretty white in this picture. This is because it absorbs the liquid weeping from my skin and traps it. When it is full of liquid it turns white. The "skin" by my PICC is not my actual skin, its duoderm, but my skin underneath is covered in blisters and is as red as my upper arm. My skin is beyond irritated and the weeping is getting excessive- through gauze changed up to 5 times a day, through clothing, I even woke up to the weeping dripping down my armpit last night.

At this point I am not sure what to do. My skin isn't getting better and is pretty painful and I don't think it will improve until I pull the PICC, but my lung function isn't where I want it to be. At this point I am considering pulling the PICC Monday and if my lungs are still bad trying for another in the other arm or waiting for my skin to heal more and trying again.

I Hate Tape

*Gross topic/pics ahead, don't read if gross things make you queasy*

I hate tape with a passion. No, not Scotch tape or duct tape, but any adhesive for your skin. The last few PICC lines I had such severe reactions to adhesive that the Infusion Center nurses didn't know what to do with me. I developed small oozing blisters everywhere that came in contact with any type of adhesive that would leak so badly that the adhesive would literally fall off. We tried EVERY adhesive and every type of prep (chloroprep seems to give me issues too) and the nurses finally gave up. The last PICC line my husband learned to clean my PICC site and we covered the PICC site in gauze and then wrapped the gauze with Coban (the tape that sticks to itself, but does not stick to skin). It was good in that it allowed my skin to heal, but it was bad because it needed to be changed everyday because it was not as sterile as adhesive.

Now to the reason I currently hate tape. Along with pregnancy comes a lot of blood draws. No big deal except that they always want to tape the stupid cotton ball to my arm after a draw. I usually tell the nurse I am allergic to adhesive and they allow me to hold the cotton ball to my arm instead. Unfortunately, this last draw on Wednesday I was in the middle of a conversation with the nurse when BAM she slapped on a big old piece of that stupid white tape over my cotton ball. I tried ripping it off immediately, but it was too late. it is now Saturday and the entire area that was covered in tape is super itchy and I have even developed a few small blisters. Ugh!

With my PICC the doc gave me prescription cream to reduce the swelling and inflammation and also to reduce the itch. Being pregnant I am sure I cannot use these creams so I am testing my will by not scratching! As I said I HATE tape.

Below is a pic of my blistery arm several days after my PICC was pulled after a week of using only gauze AND after I had been using prescription strength creme to calm my angry skin down. The little area right around my PICC site was what my entire arm looked like. I was worried my skin would never be smooth again, but thankfully besides the PICC scars all those nasty bumps healed perfectly smooth.