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!

Overdue Update

You guys, I went MIA for so long that now I don't even know how to catch everyone up. (I know I owe some people e-mails and I promise I will get to you if you emailed me during my missing person status) However, I left on such a happy high note praising Symdeko that I feel it is important to give you an update. I am not even sure how to organize this so excuse my format, this is the only way it makes sense in my head.

Summer:
Following 3 weeks of Zosyn followed by the start of Symdeko my lung function reached new highs and I felt amazing. We did a lot of traveling and Kaylee went on her first international vacation which fulfilled a dream that I thought CF may have already stolen from me because my health continued to decline for soo long. I was really hopeful that maybe Symdeko would give me a few extra weeks or even months between exacerbations and I was hoping to ride that high right into the school year.

The Downslide:
2 weeks before school started (just over 3 months post IVs) I could tell my lungs were slipping.  I was pretty disappointed because 3 months is my usual length of time between exacerbations and so despite feeling so amazing all summer I was still on my normal 3 month cycle. Always an optimist, I thought maybe I would bounce back quickly or my exacerbation would be easier to manage.  Not so. In fact, just last week after trying 2 separate rounds of oral antibiotics my lung function sunk from 40%-29%. 29% is my "oh shit" number that I was hoping to avoid with Symdeko. Am I the only delusional CF patient that keeps expecting miracles only to be disappointed for …oh 20+ years in a row?

Back on IVs:
And so I find myself back on IVs 6 months after my last round. This is actually highly unusual for me because I usually do IVs once a year with orals in between. The biggest difference I noticed is that my lungs seem to be significantly more asthmatic since starting Symdeko. I actually was thinking Orkambi was contributing to my asthma component, but it seems worse on Symdeko. Although if asthma is simply a coincidence or actually a symptom of Symdeko is anyone's guess. (I haven't been on social media outside of blogs in several years and so I have no idea what other people's experiences on Symdeko have been. Is asthma a normal side effect?). In fact, I think I had my first true asthma attack the other night which was extraordinarily frightening, but I will save that for another post.

New Drugs:
The good news is that there are now new IV antibiotics out on the market. They are actually old drugs reformulated (or something like that...it is beyond my scope of knowledge) to become new "old" drugs. I am currently 3 days into Avycaz which is a combo of Ceftazidime and Avibactam. I am hopeful that this new medication will work well because my bugs haven't come across this one yet, but only time will tell. So far so good with the only major side effect being that I got diarrhea almost instantly after starting and my urine wreaks (your welcome for that TMI).

I will be sure to report back how everything goes on this new medication. Hope everyone is staying well.