My Dermatological Journey

I recently took a trip to my transplant dermatologist, and learned some enlightening things, so I decided to share them with all of you.

Oh and I should mention that he took a GIANT CHUNK OF FLESH out of my ankle (see picture below) - which was not very fun.  Yet another reason to write this article, to warn you all, so that you do not have the same experience.

As my dermatologist mentioned during my visit, scientists have warned for millennia and that being out in the sun is not super awesome for mankind. That is, without sun protection. Being outside under the UV rays of the sun for long periods of time without any sun protection is very bad for you and your skin. Your skin, despite what you may think, is an organ, just like any of your other organs. We protect all of our other organs by eating right, exercising, drinking water, etc. So why wouldn't we want to protect our skin as an organ? We can do this by limiting our sun exposure and wearing sunscreen.  You can also do this by wearing clothing with sun protection in it, and by wearing hats to protect your upper body from the sun. There are many brands that can provide this protection. My dermatologist recommended a brand called Coolibar which can be found at coolibar.com.

As a transplant patient, there are other things to consider. For example, there are many medications that we transplant patients take that can make us more sensitive to the sun. Some of these medications are antirejection medication such as Prograf and CellCept. Other medications to consider that make you more sensitive to the sun are antifungal medication such as VFend and Cresemba. Even seemingly benign medication such as Lasix can make youat higher risk for sun related illnesses. 

During my visit to the dermatologist, since I'm on all of these medications, I found out that I was showing signs of phototoxicity. Evidence of this was showing up in my nails, rashes on my skin, and hair loss. This is a very serious condition, and needs to be treated by limiting exposure to the sun and high SPF sunscreen when exposure to the sun cannot be avoided. Of course, getting off medications that can cause phototoxicity or photosensitivity would be the best course, but this is not an option for most transplant patients. So, sunscreen and hats are the way to go!

The big thing that I learned at my visit to the dermatologist was about sunscreen. I had been using sunscreen, knowing that I was more sensitive to the sun. But I was buying the cheap, store brand sunscreen. The dermatologist explained to me that these brands of sunscreen have chemicals in them that interact with the medications that I was taking after my transplant. This in turn was basically rendering them ineffective, at the same time putting these chemicals into my body at a higher rate. I was very shocked to learn this! I had no idea that there was a difference in sunscreens. This was probably the most valuable piece of information that he gave me. And I was glad that he could give me recommendations on things to use that would be safer on my skin and for my body.

My dermatologist recommended several different brands of products to use for transplant patients. I would like to share them with you so that you can be prepared for this as well. These brands are also good for people who have sensitive skin, and skin conditions such as eczema and psoriasis. I have eczema as well, and the dermatologist said that these would be good to be using on my skin for that as well.

Vanicream Sunscreen SPF 50

CeraVe Face Wash / Hyrdrating cream

Aveeno fragrance free soap

Aveeno Skin Relief Body wash / Lotions

Free and Clear Shampoos and conditioners 

Well, that big giant hole in my ankle used to be a mole that I've had my whole life. It turned into bad, nasty, dysplastic cells. They're all gone now. And I'm free and clear. I plan to stay that way by following my dermatologist recommendations by limiting my time in the sun when I can, and when I can't, using my sunscreen and hats! I look good in hats anyway. 

Living Life, Instead of Documenting It

The last four weeks my social life has been very active. I mean, it just simply exploded. We've lived in Houston for over a year, and my husband, Leland, and I haven't had as much go on in our lives socially in that time as we have in the past four weeks. It's been nuts trying to keep up with everything, and make sure we're not late (yes, we've become those people), and also make sure I don't run myself to death.

But, it's also been fun. 

We've been able to spend a lot of time with our precious families and friends, some of who we haven't seen in a long, long time.

But, most importantly, in the whirlwind that has been my life, I have made some important self discovery.

I've always been the family photographic documentarian.  Snapping every important moment in the happenings of our life WAS my life. I wanted to make sure there was proof later.

Proof of what, though? Why did I need 117 pictures of a 5 minute visit to McDonalds on a Tuesday afternoon? How did I even fit 117 pictures into that span of time anyway...?

I needed proof that I was there. That that moment happened. That I was a part of that memory.  All 117 parts of it. Even if it seems insignificant to others, it was significant to me, and my camera was going to capture the proof.

Now, back to the past whirlwind four weeks. I recently sat down to take a look at all of my pictures, assuming I was going to have to cull at least 1200 to save some space. However, I had a revelation! There were not 1200 pictures! There weren't even 100. 

How did I go from taking 117 pictures in 5 minutes, to taking less than a hundred in four weeks - consisting of major life events, such as baby showers, family reunions, and hosting my first party since my transplant? Some major introspective meditation thus occurred...

After I returned from my "Mind Palace," I realized what was happening. I had taken photos of my choice favorite moments, but I didn't feel the need to take photos of EVERYTHING. I didn't feel the overwhelming need to have proof later, because I was too busy living in the memory right then.  I was there, in the moment, really experiencing things with the people I love, instead of worrying about what was to come, and if I would have enough proof of to last me when I wasn't there. Or to last them when I wasn't there. 

There's something about nearly loosing your life that makes you realize how you want to live it. 

Yes I know it's cliche. And I know there are a lot of you rolling your eyes right now. But, seeing less photos on my phone made me learn that about my new self.

I can live life now, instead of just documenting it. 

Let's Talk About Set-Backs

So, I deceived myself again, people.  I deceived myself into thinking that everything was going to go perfect after my transplant.  And everyone else was right there with me.  All running along under the "hunkey-dorey" kinda life sorta situation....

But, then reality hits in the form of set-backs. Bringing me jarringly down to earth. And by that I mean various infections, like C. Diff, E. Coli, and other nasty acronyms and abbreviations.

Trying to endure a recent pH Probe test

Or aspiration and reflux, for which there will be lovely potential gastrointestinal and abdominal surgeries in my future.

Or 40% loss of lung function, which I hope to get returned, but may not.

Or an increase in steroids, and all of that jazz.

But, I don't need to dwell.

The point is transplant patients, or lung disease patients, or diabetic patients, or fibromyalgia patients, or any kind of patient with a serious chronic disease will at some point experience a set-back in their disease treatment process.  And sometimes this will occur at a point when you do not expect it to happen, making it feel even worse that it already even does.

So what are we supposed to do about it?

I refer first to my previous statement: "But, I don't need to dwell."  I know it's hard, but for me, the first thing is to try not to overly concern oneself with whatever the set-back is.  If all I do is sit around researching and reading about whatever problem it is that I'm having now, it's only going to make me depressed, not to mention self-centered.  Yes, it's important to be knowledgeable and to be well educated about your health and whats going on with your body, but there is a point where WebMD is NOT your friend anymore. Believe me, I know.  We had to break up. More than once. So, let's not dwell. And let's try not to make other people dwell with us. It's for the good of the whole.

Instead, let's try to distract!  When I get down because of a set-back, I find distractions are the best way to turn myself around.  This is different for everyone, but here are some suggestions:

• Try a new recipe

• Take and arts and crafts class (There are free ones, too!)

• Get a new hobby, like crochet

• Go out for dinner at a new restaurant

• Have friends over for board games (Pictionary!!!)

• Play classic video games

• Themed movie night (ie; Black&White)

• Plant an herb garden

• Read your Bible  (Read it conveniently online here!)

• Write a new post in your blog (OK, that one is mainly for me...)

The best distractions are this - family and friends! As mentioned in a previous post, my group of friends and family are AWESOME! They work hard to help me with everything I need, and I would not have been able to go through this journey without them so far. I love each and every one of them! 

Something else that helps when you have a set-back is to focus on your spirituality.  The Bible says, "Happy are those conscious of their spiritual need" (Matt. 5:3).  I find that is so true!  When you have a set-back in your health or life, finding scriptures in the Bible that teach you about those who went through similar experiences, or simply have words that speak to your heart, just makes everything feel so much better!  For example:

"Therefore, we do not give up, but even if the man we are outside is wasting away, certainly the man we are inside is being renewed from day to day. For though the tribulation is momentary and light, it works out for us a glory that is of more and more surpassing greatness and is everlasting; while we keep our eyes, not on the things seen, but on the things unseen. For the things seen are temporary, but the things unseen are everlasting. "
 2 Corinthians 4:16,17

Another thing to help with set-backs is to try to keep moving. This is the hardest suggestion by far, and the one that I have to remind myself about the most. When you have a health set-back, the worst part about it is that you don't feel as great as you did! But try to resist the urge to be sedentary completely. I find in my case, that always makes it worse. Keep moving, even if it is a little bit, a little bit at a time.  Remember the picture above with the pH probe in my nose? I went all over Houston scaring the masses with that thing! Yes, people stared at me. Yes, small children ran away crying and were probably traumatized for life. But, I got a new pair of shoes, and almost forgot that thing was in there. Almost. I was walking all over the place, talking, laughing, carrying on as normal as I could. And when I got home I was so tired I went right to sleep, and the probe didn't even bother me. If I had sat home all day in front of the TV or tablet, the outcome would have been much different.

Yes, my friends, set-backs are hard. They're unexpected and disappointing. But we can bounce back my fellow sick-lings! We've made it this far  - "After all, tomorrow is another day." (Gone With The Wind)