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!

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??

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...

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.

Tree Bark

I love my husband for many reasons, but yesterday I added one more reason to my list. We were drinking our coffee and muffins, a tradition that started when my husband started working evenings. When he wakes up around 11:30 we have our morning coffee (mmmmm) and muffins as his breakfast and my morning snack. Kaylee joins us with her own little snack. While my husband was taking a bite of his muffin I noticed him studying my arm. He was looking at my arm quiet intensly and after another rather large bite he says casually, "You know your arm looks just like tree bark." I look down at my own arm and realize the layer upon layer of yellowy scabs resemble a tree truck with thick layers of bark. How he could look at the grotesqueness that I call an arm while enjoying breakfast is beyond me. If his arm was so covered in thick layers of scabs (made not of blood, but of the salt/water/protein mixture my arm is covered in) it looked like tree bark I would ask him to keep in covered until it healed to keep me from barking on a daily basis. Oh dear husband,  only you would not be disgusted by me in this hideous state!

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.

Bad News All Around

I went to clinic yesterday after 10 days of IVs and I sort of wish I didn't bother to go because it was one huge disappointment. My weight is down to 118lbs. At 5'4" this isn't horrendous, but for me it is pretty bad. I usually weight 125lbs so the drop was pretty significant. I will admit that several days went by while I was sick in bed that I didn't eat anything. At all. So I knew my weight would be low, but I still hate seeing any numbers below 120.

My PFTs are down by 7% which is pretty bad after 10 days of IVs and because I don't feel like at this point I have a lot to spare. I never got my PFTs done while in the middle of the flu, but I am curious what they would have been...I have a feeling I would have been horrified if I had seen those numbers. I was pretty terrified that my doc would come in and admit me to the hospital since everything looked so grim. When he came in he asked me how things were going. I explained that I was sick in bed for 2 weeks straight (which he knew). That I hadn't been eating, exercising (not even walking because I had no energy), and felt as if my lungs were full to the brim, BUT after 10 days of IVs my mucus was getting lighter and it was getting much easier to clear out. I also told him that I knew my body wasn't ready to stop IVs based both on my numbers and how I felt. He said that swimming prior to getting the flu probably helped me more than I can know even though I feel disappointed with my numbers and slow recovery. He wants me back to exercising as soon as I can. We decided to do one more week of IVs and then we will reassess. So no hospital admission for me yet which was a huge relief.

I feel a lot of pressure to get my PFTs as high as I can in the next 6 days because I am terrified of what will happen if I don't. I know very little of my recovery is in my control at this point which makes it much harder to deal with. I am doing all my treatments, doing all my meds, and even have IVs so there seems to be very little more I can add on to my daily health care. I feel this intense pressure to do better, get healthier, raise my PFTs, but I also feel like I have no idea how. I need to find something I can do to feel like I can control. I have decided to gain weight since this is somewhat in my control. I know my lung function is always higher when my weight is good. I am also going to try to exercise as much as my low energy will let me. The weather should be beautiful this week, in the high 70's, so I am thinking I can manage a walk everyday for the next 6 days. I find this disease can make you feel defeated very easily. I think back to 3 weeks ago when I swam a mile with ease and came home to take an hour walk with my daughter. Now the thought of walking up the stairs is overwhelming. It is amazing how quickly life can change. I just hope that things can return to how they were 3 weeks ago.

**EDIT: I should add that my flu symptoms are pretty much gone. I no longer get fevers and I actually get up and get dressed and I even managed to put on makeup yesterday. So I guess it is not bad news all around, just bad news mostly around**