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)

Chick-Fil-A and Vanilla Coke

There is a famous saying, "You are what you eat."

If that's true, then my first semester of college, I was a Chick-Fil-a sandwich, large Waffle Fries (don't forget the honey mustard), and about four bottles of Vanilla Coca-Cola a day. They had a vending machine on every single corner.  Looking back, I really have no idea how I survived.

Between then and now, I had many major slow, and not-so-slow life changes that caused my delve into "health nut-ism," as some may call it. I try not to get on my soap box about it because I recognize that everyone has to make their own choices in life, and that includes diet. But, I have to say, that for me, eating a healthy diet has made a humongous change in my life, and I would love to share that with my readers from time to time if that's all right with you. So, fair warning, sometimes I will include little bits of interesting food or diet tips, or things I've learned along the way about vitamins or nutrition.

For example, did you know that quinoa is a complete protein? That's right! Quinoa contains all of the essential amino acids needed in the body. Quite a powerful punch for this tiny little grain, isn't it! It's one of my favorite foods! When you combine some cooked quinoa, corn, black beans, roasted tomatoes, bell pepper, lime juice, and your favorite Latin spices - it makes a quick and easy salad that can't be beat!

For those of you wondering, I hold to a vegetarian diet. I was vegan, or plant-based, for three years in the past as well. This diet works best for me and my husband. I find that it is the best for our digestive system, and helps keep weight down while on certain yucky medications like prednisone. I know these diets get a bad rap for not having enough calories or protein, but I believe this is when people do not do their research properly before starting these diets, and do them the wrong way. Personally, my transplant clinic encourages me to continue with my current diet.

Obviously, it is always important to speak with your doctor and nutritionist before starting any new diet regiment, and always, ALWAYS DO YOUR RESEARCH before jumping headlong into something new. This will ensure that everything is being done properly and healthfully. 

"You are what you eat." I am now purple cauliflower and asparagus and quinoa and sweet potatoes and tofu. What are YOU?

"I Climbed E-Rock" - That Overpriced T-shirt Will Be MINE

Once a week on Thursdays at the hospital, a special group of people gather together.  There, on the 4th floor of Dunn Tower, is the Heart/Lung Transplant Support Group.  I'm a regular there, and have been way before I was even listed for my transplant.  I credit a lot of people there for helping me to even come to the decision to stick with the whole process, sharing with me their very personal journeys, be it bad or good.  And now, as I am on the other side, it's my turn to pay it forward.

Recently, I was able to share with someone what I think has been my greatest piece of advice. Something that has helped me personally since I was admitted into the hospital in February and knew I wouldn't leave without my lungs, until now, trying to regain my strength after years and years of chronic illness - having goals.

It sounds mundane maybe, cliche even.  But, for me, having clear, set goals that I want to achieve in mind has been the greatest motivator to be able to overcome all the challenges of not only being a transplant patient, but being a person suffering from chronic illness, or just being a human being in a world challenging to live in in general.

Just think about it.  You wake up in the morning, pop open your eyes, and the first thing you think is, "Oh, great. Another day of nothing. No where to go. No one to see. Nothing to do."  What kind of motivation is that to get up and take your medicine?  Do you exercise?  Get stronger?  Be better?

But what about this:  You wake up in the morning, pop open your eyes, and the first thing you think is, "Oh great. Another day of nothing.  But, I'm going to run a marathon in two months... I'm going to ride the Houston Critical Mass next month.... I'm going to volunteer with Donate Life this weekend.... I'm going to climb Enchanted Rock when I'm strong enough.  I better get to work!"

Goals don't have to be grand in nature, either.  Mine started out as getting up and making my own breakfast, or putting up all my clothes myself.  The point is that you make a goal, and when you reach it, you've accomplished something you can be proud of, and that moves you forward in your life and health. Start with breakfast, and move on to the 5K.  It's all based on what you can do now, and where you want to go.

Goals. It might sound kinda stupid at first, but I'm telling you it works.  And yes, that bit about Enchanted Rock, that's all me.  I've tried a few times previously (even with oxygen in tow) and failed miserably.  But, soon I will get to the top. And I will buy the cheesy overpriced shirt, and hat, and bumper sticker, and whatever else that little shop down by the parking lot sells.  And you will hear me shout a victory cry from the top of the rock.  Cause it's going to be amazing people. 

April is Donate Life Month

April for the Transplant Community, is special. Why? Because April is Donor Life Month. It is in the month that we as recipients, team staff members, doctors, caregivers - everyone involved - recognize those that make all of these amazing and incredible things possible - the donors and their beautiful families. 

Throughout the month, this is done in various ways. There are walks and runs, charity events like galas and dinners, campaigns online to raise awareness, or even smaller events around the community to encourage organ donor registration. 

Last week, I received an invitation to The Methodist Hospital Celebration of Life. It's a very special event inviting the Methodist Transplant Community together to recognize the donor families and their special importance to all of us. 

Yesterday at support group, we talked about what would happen there. I've never been, obviously, because I just had my transplant last month. It's not like a marathon run or a gala. It's for our Transplant Family to get together and meet each other and donor families. The will be ceremonies of appreciation, speeches, and stories. The social worker there described it as, "very emotional." 

Just sitting here thinking about it, I imagine it as being "very emotional." 

I'm extremely excited about attending this event and feeling a part of this. Being able to see my fellow recipients, meet them and talk to them about their experiences and where they are in their lives right now.

But most of all, I look forward to being to meet and express myself (if I have the courage) to some of the donor families. I have not had contact with my own donor family as of yet, so being able to speak to them and maybe express to them a few of the things locked in my heart, those deep words of gratitude (although that doesn't even seem to be an adequate word, does it) would feel... 

Gosh, I really don't think there's really a way to describe it in normal human vocabulary. I think that's why it would take so much courage. 

Everyone that really knows me knows that since I was a kid, I cope with the stress of my illness through deflection with humor, and disassociation of just removing myself from a situation I don't want to be in, either physically or mentally, if necessary. Yes, I just admitted this to the entire planet. This isn't news, people. (Ah, there it is. Deflection.)  Now that I have my new lungs, I want to heal myself of all of these yucky bad habits, and feel and react like a normal person who wasn't sick her whole life would. I know this isn't an overnight thing, and will take work and time, but another thing about me is that I'm extremely stubborn and determined. That's why I've done so well so far with my recovery physically, add why I'll do even better with this part, too. Anyway, I digress.

I think I really, really digressed. Sorry.

I think, for me, expressing myself in this way will be healing. I have a deep, deep emotional gratitude for my donor and their family for what they did for me and mine. Without their gift, I wouldn't be planning for my future. I wouldn't have had one. Gratitude? Appreciation? Those words are tiny in comparison to what I think tansplant recipients really feel. What I really feel. 

So, April is Donate Life Month. How are you celebrating?

And off with her... Lungs?

 

So, the most common question I've been getting these days is,  "How does it feel to breathe with different lungs?" It's a common misconception that a transplant patient will feel like super person directly after surgery.  For example,  in lung transplant patients, the airways of their new lungs have to be reopened through breathing exercises and treatments, as well as the secretions removed through a series of several bronchoscopies. 

"Wait a minute, Strike that. Reverse it." - Willy Wonka

If you haven't already heard,  I had my double lung transplant on March 6, 2015 at 4PM. It was completed by 8PM,  after which I spent 7 days in CVICU.  Now,  I'm on the transplant floor,  working hard to be able to go back to our rented Houston apartment. 

Did I forget to mention to you that I have my new lungs? 

Now,  back to your question, "How does it feel to breathe with different lungs?."

It feels 

weird

fantastic

scary

stiff

wonderful

hopeful

like a privilege

When I first had the ventilator removed,  it was pretty disconcerting. I wasn't used to breathing in that manner.  The respiratory therapist explained that transplanted lungs need to be opened up; the airways forced open through breathing exercises and walking.  Also,  coughing is a must.  The post-surgical secretions, known by me and mine as "lung butter," need to get out of my precious new breathing machines! It's all very painful,  but you do it anyway,  because you know it'll be worth it in the end, and because you want to honor The Gift.  

Breathing without supplemental oxygen is awesome!  My nose is finally clearing up.  At first,  I would mildly panic when there wasn't something on my face because I was so used to a cannula or mask. But now,  I'm loving it.  Yesterday, I was sitting with my mom in our quiet, end-of-the-hall,  room with a big window,  (thanks Tracy and Erin!!! ) when suddenly I burst,  "I can carry a purse now!" It's the small things in life I want, like a Michael Kors bag.  Simple. 

They took out the final chest tube three days ago.  Those things are HUGE!  I was finally able to take really good, deep breaths.  It was amazing.  I'll have these lungs opened up in no time.  

Yesterday was the first day someone asked me,  "How do you feel?" and I thought about it for a minute,  and I a cut all you replied,  "I feel good." Now,  as for tomorrow,  that may be another story,  but I feel that everyday feel good will increase as time goes on. 

Unless you've had a transplant, there's no way to fully explain it.  But,  I'd like to share my experiences with you.  

Until then,  take a deep breath.  The O2 is fine out here! 

"Am I A Useful Thing?"

So, having been in hospital now for almost three weeks waiting for my sparkly new lungs, I've made a few observations. 

Natural sunlight is in fact necessary to human function and sanity. Loss of it results in loss of time awareness, such as:

"What time is it?" 

"10 AM" 

"Oh, I thought it was 6 in the evening." 

This also results in thinking either less or more time had passed than has really passed at all. Frustrating when waiting for an important event, for example, a lung transplant. Times like this really call for a TARDIS. 

Nurses have much better enunciation and handwriting then doctors. And manners. And personalities. And hair. 

The more you drink sub-par, watered-down hospital coffee, the better you think it tastes. Seriously, at 5 AM, it's simply fantastic.

But, most of all, the observation I've had the absolute pleasure of making the three weeks is that I simply have the most fantastic group of family and friends of any person on the planet. Hands down. Period.

When my illness first became intense, I went through a sort of culling period, where I realized that some couldn't handle my situation, and that I was going to have to come to terms with the fact that I was going to lose people during the progression of my illness. I think anyone who's gone through a serious health trauma has experienced this. While understandable, it can be shocking at first. 

But I soon recovered. I realized that the people that stayed with me would always be there, no matter what. And that quality is what really matters, not quantity. Life lesson. Check.

When Leland and I relocated to Houston for my transplant, I'll be honest, I was nervous. But, there was no need. The floodgates of our Christian brotherhood was opened to us, and we have been overwhelmed by the love and hospitality of all of our new friends!  We've had food, drinks, crafts, books, pampering supplies, games, cute stuffed animals, etc, etc, all delivered right to my room by smiling faces every single day. 

Not to mention all the calls, cards, emails, tags, and texts from my dear friends everyday.

My greatest fear I think was that I would sit in my hospital bed and life would go on and everyone would forget I was there and I would be alone. I said as much to our dear friend Sterling early on I this process. He told me that would never happen. And he was so right. 

Recently, some friends came and played a game with us where you guess a card you can't see on your head. You continue to ask the other players questions until you can figure out your item. One question Leland asked us about his card was, "Am I a useful thing?"

To my support system, my friends, family, congregation here in Houston and at home in Jasper, I say to you, you are a useful thing. The most amazing useful thing to me right now. And I thank you for all you do. And for who you are. And for being here through it all.