Cheney's Transplant: Thoughts from a Recipient

It has been made public that Dick Cheney has received a heart transplant. Cheney is a polarizing public figure. I don't think I've met anyone who "kinda likes" the guy. The same thing went through my mind that I'm sure might have gone through yours: "Isn't he like 100-years-old?". Actually, he's 71, but still... That's pretty old. So at first I wondered if some cronies of his pulled the strings to get him the first, freshest heart they could find. I couldn't have been more wrong about the circumstances though.

The average person on the waiting list for a heart transplant waits about 6-12 months. Dick Cheney waited 20 months. I'm no celebrity, but I was immediately bumped to the top when I went on the transplant waiting list. Of course, a lot of things play into that.

1. How sick are you? Can your quality of life be sustained without a transplant? As horrified as I was to wake up with a tracheostomy tube, needing that device actually was helpful in being able to "bump" me up to the top of the list.

2. Your doctors. Certain programs are more elite, are participating in studies involving transplants and have more pull than others.

3. Your size. I almost got a transplant 2 days into being on the waiting list. The problem? I'm a small girl. I am approximately 5'0 tall. The tallest my donor could be was 5'4, which narrowed the donor pool exponentially.

4. Other health factors. Is that organ the only thing keeping you from living a healthy life? Are there other problems? Are your kidneys healthy? Are you mentally stable? Do they believe you will take your meds and do everything in your power to keep this new organ healthy? Potential recipients go through rigorous physical and psychological evaluations before being determined as "fit" for transplant. Cheney would of had to pass these tests to even get on the list.

There's obviously a lot of other reasons, some I'm sure I'm not even aware of that come together to give a person the very special gift of transplantation. Cheney obviously was a sick man. He had 5 heart attacks and was living basically on batteries. However, doctors apparently thought it was reliable enough to not bump him up. Or, maybe, Cheney simply refused to be moved up because he knew the media speculation it would cause. I'm sure he went to the best of the best hospitals. And who could blame him? I've always done the same thing. My family packed up and moved to Missouri at one time to make sure we had the best of the best, and we are just regular folks. If I had Cheney's money, I'd go to the best place money could buy.

Speculation is the Cheney had a rare blood type which could have delayed the transplant even further. Age had to have played a role in this transplant. When transplanting organs, there is a 6 factor matching system known as HLA typing. A perfect match is of course 6 out of 6. Some family members are a perfect match, and some only have 3 out of 6, whereas a complete stranger may be a better HLA match for a person. When I had my kidney transplant, we went through a swap process where my aunt in her 40's donated to a patient in their 40's. In exchange, that same patient had a donor in their 20's donate to me. Not only was the younger donor a better HLA match, but the doctors felt better about putting a younger kidney in a younger person. I can only guess that doctors would also want an age appropriate heart for Cheney (especially since the size of ones heart changes over time. And he will only need it for 20 or so years). So if you had an image of cold, evil Cheney taking a donor heart from a sick little 8-year-old boy, you can get that out of your head right now.

I have a little experience on being on the waiting list. I can honestly say, it feels like purgatory. My phone is always with me anyways, but the level of neurotic I reached with my phone was beyond ridiculous. It was always on the loudest ring volume it could be, even if that meant a drunk text from a friend would wake me up in the night. I started wondering if my phone was broken or if I didn't have service and that was the reason my call wasn't coming. Was there a mistake? Did they get my number wrong? Did they accidentally erase me from the list? Every scenario goes through your mind. You already feel like an unlucky soul needing a transplant. Maybe another unlucky scenario happened and it's going to cost me my life.

Obviously I'm younger, I haven't lived as full of a life. I probably had more anxiety and unfinished business that someone who is 48 years older than me. But I also only had to live with these feelings for 5 weeks. Anyone who can do it for 20 months deserves some praise in my book. Being on the waiting list is putting your life on hold. You can't plan a vacation. You can't be more than a few hours away from your hospital at any given time. I remember just wanting to spend the day in my apartment, alone but I couldn't take the risk of getting that call and not being able to get to the hospital. Yes, I understand he probably has a personal driver and a helicopter. But what if there's a mechanical malfunction? Hearts don't care if you were Vice President. They expire after a certain number of hours if you can't get to the hospital, get prepped, and ready for surgery. I'm sure you don't ever have 100% peace of mind. You don't ever feel secure. According to Maslow, we cannot reach our needs of love, belonging and self-esteem without first feeling secure.

I'll also play devil's advocate with those of you who think the status of Cheney played a role in him receiving a transplant at this age. I believe it's very probable that BECAUSE of his status in the public eye, he will feel the pressure to properly take his immunosuppressant drugs, attend his doctor appointments, and possibly maintain his heart even longer than someone younger who doesn't have such public pressure on them. And because of his wealth, he's seeing the best of the best, being thorough, and going get the finest care possible going forward. If you're the donor's family, and you put politics aside, do you want the heart going to someone who may not take care of it, or someone who is going use all their resources to keep this heart as long as possible? It may seem unbelievable, but I've heard many stories directly from doctors of patients not taking their dugs after a period of time, relying on a loved to know their medications and dosages, not refilling drugs because of the price, and even not going to the doctor after signs of infection or rejection set in. These issues are much less likely with a patient like Cheney.

Everyone is allowed their own opinion on this issue, but I feel I have an opportunity to offer a unique perspective. I admire someone who can wait that long, especially when they're in a position of privilege and power. It's extremely humbling being used to having everything at your fingertips and still not be able to fix a problem. His odds of survival after 1 year are a bit below 70% and around 60% for a 5-year survival rate. I believe doctors take an oath that most follow and all involved waited till a heart that was right for Cheney was available. And improvements are being made every day in the world of immunosuppressant drugs and transplantation. It's exciting to read about and be a voice to represent.

Holiday Cheer... for CHEAP

So I shimmied down to my local Target this morning to create a craft project to spruce up my apartment for the Holiday season. With less than 700 sq. feet in my one bedroom apartment and a dog who likes to get into anything that I leave near the ground, I have to get creative about where I can put up my Holiday decor.

Anyways, this is my latest and greatest project that works. In my mind, the sticky candy canes that you shove on your windows are a bit... ehhh.... tacky. Whether you have one window (represent!) or one hundred, this is an affordable and classy way to dress them up!

Supplies:

1. Christmas Ornaments (I got mine at Target. The snowmen are glass. The rest are plastic. Since my apartment has a lot of blue in it, I went with different shades of blue and silver.)
2. Bulk Curling Ribbon. The white complimented mine best, but they have so many colors. Gold or silver would be really pretty too.

3. Scissors to cut off excess ribbon

Instructions:

1. Thread ribbon through the ornament eye which is meant normally for a hook.

2. Measure out how much ribbon you want and then double that amount. This will be the length of the ribbon your ornament will hang from.

3. Take the top ends and double (even triple if you want!) knot it up top to keep the ribbon from coming undone.

4. Continue hanging all ornaments at different lengths until rod is full and enjoy the prettiness!

A Filling Autumn Meal is Already in Your Pantry!

ALL YOUR INGREDIENTS, LAID OUT RIGHT THERE!

So now that Halloween is over, can we please celebrate the Thanksgiving - Christmas food season? You know, the time where things get extra decadent. Now, I realize that Halloween just ended a few hours ago, se let's start slow.

It was about 2 am and I was craving some good soup. What I was not craving was doing a lot of work. Thankfully for me, I was able to invent a new soup using only ingredients that I had in my pantry. Think of it as a more bold chicken noodle soup with a richer, creamier broth than those you get over the counter. Yet, I bet everything you need to make this soup (or at least most of it) is in your kitchen right now!

The ingredient list goes as follows:

Lipton Soup Secrets Noodle Soup

Egg Noodles

1 can Cream of Mushroom Soup

1/2 Beef Bullion Cube

Soy Sauce and Worcestershire Sauce, added sparingly for taste*

1-2 stalks celery**

*your soy sauce will contribute as your salt factor so do not add any extra!

**you could also add fresh parsley, leeks, bok choy, or even cilantro for a little green and crunch

1/2 can Bite Sized French Fried Onions (for that autumn feeling!)

Instructions:

Cook the noodle soup according to package directions along with the egg noodles. Turn saucepan to low. Stir in Cream of Mushroom Soup and Bullion cube at this point. Begin to sparingly add sauces until you reach a flavor that meets your satisfaction. Chop up celery or other greens (carrots would also be nice!) and allow them to marry with the flavors of the soup. Keep soup warm on stove.

Once ready to serve, place noodles on place or in bowl and top with french fried onions.

Tastes great all alone but the rich sauce would also add amazing flavor to your typical grilled chicken or pork and the noodles become a delicious side dish!

Eat, Drink, love Miss Mary

I forgot to take a picture until I was halfway done devouring it. But you get the idea. Ooops!

Your Best Morning

Instead of buying a box of your favorite sugary cereal this week, why not make your own in a matter of minutes? You can control the ingredients and cut out so much sugar, ensuring that not only is it composed of YOUR favorite stuff, it's actually GOOD for you too! Here's what I'm eating for breakfast this week along with my milk. It would be great with dried cherries, slivered coconut, even white chocolate chips (yum!). The combinations are totally yours!

Best Morning Granola

2 Cups Rolled Oats (NOT quick cooking oats)

1 1/2 tsp Cinnamon

1 teaspoon Sea Salt, plus more for sprinkling

1/4 Cup Honey

3 Tablespoons Vegetable Oil

1/4 Cup brown sugar

1 tsp Vanilla extract

1/3 Cup Almonds

1/3 Cup Hazelnuts

1/3 Cup Golden Raisins

1/3 Cup Dried Cranberries

Preheat Oven to 325 Degrees. Spray a baking sheet with nonstick spray.

In a large bowl, toss oats with cinnamon and salt.

In a separate bowl, whisk together oil, honey, brown sugar, and vanilla.

Pour honey/brown sugar mixture over oats and stir mixture until oats are fully coated. Pour mixture out onto baking sheet and spread out evenly.

Bake for 10 minutes, then remove from oven and toss granola before adding almonds and returning to oven for additional 5 minutes. At this point, add hazelnuts and toss granola one more time.

Bake 10 additional minutes then remove your granola from oven. Sprinkle immediately with sea salt to taste. Let cool slightly before adding raisins and cranberries. Stores in an airtight container up to one week.

Ten Years Later

"I think of 9/11 all the time. I want to always remember the awful feeling of that day. To forget would dishonor those who died." - Former CIA Official

May we never become complacent or forget the past. May we always respect those who lost their lives that day and those who are fighting to keep us free and safe. Lastly, may we never stop hunting those who threaten the innocent lives of Americans. I pray that history never repeats itself and for all those who lost someone on this horrendous day in history. We will not forget.

Living the Sweet Life

Returning to "normal life" has meant a timely return to football season. With football, of course comes tailgates. The keys to successful tailgating food is of course is that it's easy to transport to your tailgate and that you can eat with your hands. Here's a new take on brownies that I've come up with for tomorrow's Texas vs. BYU football game. If you're looking to switch things up in the sweet realm, I promise you won't be disappointed!

Chewy Crunchy Brownies:

Brownie Batter:

1/3 c. Evaporated Milk

1 1/2 stick Butter, Melted

1 box Chocolate Cake Mix

Filling:

1/3 c. Evaporated Milk

14 oz. Caramel, Melted

4 oz. Mini-Twist Pretzels (approx.)

6 oz. Semi-Sweet Chocolate Chips

Preheat oven to 350 degrees. Combine first 3 ingredients. Batter will be extremely thick. Put 1/2 of batter into 13 x 9 pan well greased and floured. Pat down batter and bake for 6 minutes. Meanwhile, melt caramels and milk in a double boiler or microwave. After the first layer is done, spread the caramel mixture on top. Break up pretzels into small pieces and drop into melted caramel. Dot with chocolate chips. Cover with remaining batter and bake for 10 minutes before topping with additional pretzel twists for decoration. Bake for an additional 10 - 15 minutes. Cool and enjoy!

Healing in Every Form and Fashion

It's been overwhelming in every sense to finally have the physical freedom once again. It's 3:13 AM and I am in bed, wide awake like many nights recently. My romantic answer for you is that my body just doesn't want to shut it's eyes now that I'm free to do whatever I please and am not chained to an oxygen compressor. I can't sleep cause I'm so excited and I just want to soak up every solitary second of being ALIVE.

Well, as much as I long for that to be the cause of my insomnia, it isn't. I've been experiencing nightmares and keeping odd hours just in the past week. I can only think that when I first got home from the hospital, my body was still so physically exhausted every night, that no dream, no matter how strange was going to interrupt my sleep. However, now I am stronger and probably sleeping more like you or any other healthy person would... except for the fact that I'm not sleeping.

My "nightmares" aren't nearly as terrible as what I experienced in real life over the past year. To me, the surgery and the physical recovery has been a necessary means to the end of a year long, real life nightmare. If you were there or in contact with me on the day of my surgery, you know that I was cool, calm, and happy. There was no stress or worry running through my body anymore. The true test of strength and the time I found out who was really there for me in my life had already come and past. The trial was the long battle of staying afloat during while the rejection took over. And the surgery was not a celebration in my mind, but rather the closing of a chapter; a collective sigh of relief for those close to me and for myself. Some people stepped up to the plate, reached out, and pleasantly surprised me by really being there during a year that I can only describe as purgatory, at times hell, on Earth. Others bowed out or never even showed up. But that is neither here nor there.

The nightmares is experience on nights like tonight take me back to those days when I was still struggling to fit in to the world of a healthy person and hide my illness from everyone around me. Despite the fact that my parents still pay for my cost of living, I do think of myself as somewhat independent. I live(d) alone in a condo that I fixed up with my mom to have reflect my life, passions, and personal style (think Texas Hill Country meets New England). It doesn't take long to realize that cooking, concerts, toile, ticking, and my friends are all things I love. In college it's common to have 3, 4, even 6 roommates. But this 655 sq. ft. space was all my responsibility and I cherish my tiny apartment so much. I give every inch of it as much TLC as I can. Before I got so tremendously sick, I also had Abel up with me in Austin and I took care of him on my own. Despite a few mishaps like him chewing up a retainer and his own doggie bed, he is a successfully potty trained dog who doesn't bark or beg for food. I'd like to think that my time with him alone during his formative months has something to do with that.

I am always punctual, to a point where it stresses me out. Being late to even a lunch date with a friend embarrasses me. Being late for a class? Even worse! I learned how to creatively cook for one and I even preferred going out shopping solo. So, despite the tiny little fact that all my money was flowing from Jodey Burkholder, I felt very proud to be my own functioning little entity thriving up in Austin.

These dreams I have at night take me back to when I lost all of that. I'll be facing a steep (we're talking San Francisco steep) hill or I'll be told by a friend that it's a two mile walk to our car and I'll crouch on the ground and just be overwhelmed with the fact that I CANNOT get to where I need to go. I am literally stuck. Like I said, these dreams are not as bad as some of the realities (and hallucinations) I faced in ICU and telemetry over the past few months. They are stressful enough however to wake me up and keep me from that carefree rest that I thought I would experience so easily after transplant.

The physical part of me is healed, but my mind is taking time to catch up. I am SO BLESSED to have patient, attentive, and understanding parents who are doing everything they can to help me get back to that place where I am healthy in mind, body, and spirit. For a while now, I have had the goal to attend the first Longhorn football game of the season. It will be hot. It will be crowded. But it's something that means the world to me. Less than a month out of one of the most major surgeries a person can have, my parents could have easily told me the game wasn't an option. Instead they are driving up, attending the game themselves and staying in a hotel. If the temperature outside, exhaustion, or simply the anxiety of sleeping alone for the first time in 3 months gets to me, they will only be moments away. I feel my parents need to be lauded for how far above and beyond they have gone in this experience. There was no manual on how to handle our situation, but they have done so in such an impressive way. If you ever get a chance, please praise them for being so exceptional because the two of them have been completely self-sufficient in keeping a positive family environment throughout a time that could have been very tumultuous. Along with a few other people who I can count on one hand, they have kept me smiling down here in San Antonio and lessened the sting of not being in Austin, working toward my degree. And I owe those people to the ends of the Earth.

So yes, this weekend I will be at the Texas season opener against Rice, three weeks after a bi-lateral lung transplant. And I'm so grateful for the opportunity to even be breathing the outside air at DKR Memorial Stadium with my fellow Longhorns. I've been planning snacks to make for a friend's family tailgate for the past week and I can't wait to sit and catch up with everyone and bask in the Texas heat, while staying plenty hydrated. Though I am an adult, and in most cases, I feel that things like the decision whether or not to drink are personal and shouldn't be scrutinized, I've felt a conviction to make my personal stance on alcohol public since so many people have been concerned for my health and want to see me succeed in the future.

Anyone who has seen my Facebook page or knows me fairly well knows that I have done my fair share of partying, like most college students. And the idea of sitting outside watching football at a tailgate with a cold Shiner Blonde in my hand sounds like a perfect day which I'm sure one day I will do further down the road. However, I am very aware that a lot of people watched waste away and come close to death. As much trauma as I have internally experienced, I know my disease has put an enormous amount of stress and heartache on the people who love me as well. Out of respect for all of those who prayed for my health to be restored, I do not want to it to even APPEAR for one moment that I am not taking this new, unimpaird body of mine for granted. This extends past alcohol, of course. I want to reach a healthy weight, a healthy body imagine despite being cut up like a ragdoll, and I am striving to mentally reach a place where I am at peace with all that has happened to me in the past year. This recovery period is not just for my body, but for the whole person. I want to emerge in the coming months strong, driven, and tougher than I ever have been before despite having experienced things I wish I could forget. God has given me all the tools to move on in a positive fashion. It is up to me to use the time I have responsibly and to glorify Him in every way possible and find the small flickers of light in what was a year of darkness.

Another Step to Normalcy

Today is only my 9th day home from the hospital! I woke up this morning in a super amount of pain. In the morning, I seem to always need painkillers. But other than that, I'm pretty much pain free! Less than 3 weeks out of my transplant, I corrected one of the problems that has plagued me since my blood clot in October. Because of medications, stress, and illness, my hair has been falling out and causing me grief for such a long time. Today, I got extensions put in to help fill in all the hair I lost. I'm so happy with the results! Looking healthy is one of the keys to feeling healthy and I'm glad to say I'm looking (and feeling) better with every passing day! It's such a great thing to finally feel like a normal person again so quickly after surgery! The necklace is courtesy of my niece, Bella, by the way. :)

Transplant Update

Gratuitous Eyelash Update

To those who were curious how my Latisse experimentwent, I'm obsessed. Here is my before and afterwith only really about 5 weeks of treatment. (I stopped for about 3 weeks in the hospital. My lashes are without a doubt darker, so all you light lashed gals, this is great for you. They are so thick, I feel like they need to be brushed out before applying mascara. The picture doesn't show off the length as much as I'd like, maybe cause of my lashes curling up at a certain point. But in the "after" photo, you can see shadows on my face that my lashes cast. Seeing them in person, with no mascara (which is pretty much always, these days), is the best testimonial I could give. But to those of you on the fence, try it!

I've had zero negative side effects. My eyes/eyelids never itch. My eyes didn't turn brown, and I've been paid so many compliments. I even got a $40 rebate on my first month's prescription so at least try it for a month! Worse case scenario? You wasted about $50. I know that's a lot of money, but sometimes we need to treat ourselves, right ladies? Best case scenario? Longer, fuller, darker lashes which maybe your boy toy will never notice, but other women will envy. Talk about a mini self-confidence booster... for less than most salons charge for highlights and a trim!

Stir Crazy

Independent George is dead. To those who do not get that joke, no worries.

My life is house arrest. Thank my Lord that I am no longer in the hospital, but I am here at home, waiting still for that phone call. Life has been reduced to as far as supplemental oxygen can take me.

I feel as if I took for granted what little lung capacity I had prior to June 6 and could kick myself for not being more grateful. But then again, who isn't guilty of forgetting to count all their blessings? Right now, I am alive. And every day, I am one day closer to a transplant, whenever that day may come.

I get a guitar lesson tomorrow from my brother Kyle, which is exciting since I'm too inept to even master the D chord at this point. The kitchen has and will continue to be an escape for me, however, I still am asking for prayer. Prayer for strength to return to my body, mind, and spirit. I need prayer to get stronger, gain weight, heal the infection in my lungs, and possibly get off this trach. I'm not sure how many people actually read this, but if you do, and if you pray, please take a second to do so. I will be indebted more than I can say. I need support more than anything until that phone call arrives.

for 23 years, God has taken care of me, and I don't think He has abandoned me now. However, I want to remain a good example of a servant of His, rather than becoming reliant on myself. I know alone, I will succumb to depression and hopelessness. But with your prayers, I know I can stay upbeat and the time will quickly pass to the day I receive my transplant. Love you all.

“All human wisdom is summed up in two words - wait and hope”

Best Hospital in San Antonio

When you're stuck in the hospital, it helps to know you're in one of the best in the USA

http://www.universityhealthsystem.com/our-news/press-releases/1105-university-health-system-is-top-50-hospital-in-two-specialties-and-overall-best-hospital-in-san-antonio-metro-area

RT Wisdom

"Faith is the ability not to panic." - Respiratory Tech in ICU, with perfect timing

living in slow motion

I've been living life at the top of the transplant list for a week now. As glamorous as being #1 might sound, it's been quite the opposite. I have not yet been granted that perfect pair of lungs. I haven't received a late night phone call ordering me to rush to the hospital. None of that. I have been, instead, glued to my phone like a schoolgirl waiting to get asked to a dance, except I'm about 100 times more desperate (I guess it really depends on the schoolgirl). Anywho, I've gotten my fair share of teases. All hospital phone numbers start with "358" so whenever I saw those pop up, I'd get butterflies in my stomach. But for some reason, the transplant clinic which is lucky to answer the phone at all deciding to call me several times to give me a friendly reminder that I had an appointment on Tuesday. I was also told I was thisclose to getting a transplant a week ago but the lungs were just a little too big. It was SUCH A TEASE. A reminder from the clinic and the lab?! A call from the transplant team that they were having size issues? Excuse me for dating myself with this reference but am I on "Punk'd" or something?! When does Ashton come out with a Yeti cooler full cadaver lungs? Never? Okay. Calm down, Mary. It's only been a week. It's ONLY been a week and I'm already losing it.

I am already making plans for after the big operation. I know I will NEED my eyebrows waxed so that's first on the list. I've already totally let myself go for the time being. I see a nail polish I want and think "isn't that nice. Maybe in a few weeks". You see, I have a device in known as a tracheostomy tube. Any attempts to look either classy or fabulous are thrown off by the gaping hole in my throat. It's necessary though. I need the 100% oxygen like I need water, Mister Abel, and Jesus himself. It's been God's little way of making me throw vanity out the window. I can promise you I'll be freshly showered with a smile on my face. But those 3 layers of mascara that I used to don may be absent as long as the trach is present. Cause let's face it, I'm not meeting my soul mate in the next few weeks with this thing in. I'm okay with that.

Even if Mr. Sexy Man did ask me out, he'd immediately be turned off by my new hobby: coughing up weird stuff. I've become that kid, you know the one; The kid who looks at what's inside their Kleenex just a little too longer than is considered normal. I'm really fascinated by what can come out of a dead/dying left lung. Mainly it's what looks like the top of a gnarly scab, accompanied by some blood. Sometimes, it's your run of the mill bright green infection mucus with streaks of black running through it. To those who just vomited, I'm really sorry. I have a fascination with the human body, including it's ability to get rid of what doesn't belong inside of it. Reason number 537 that I think I'd make an alright nurse. I probably couldn't look a patient's mucus that long though before thoroughly freaking them out. Oh great, we have Mary again today. She's the one who looks at my mucus.

the mucus queen is yours

As for the time, it drags. And it's maybe because I haven't found a good hobby yet. My mother is a very "mommy" mom and she's good at everything I want to be good at. Her suggestions to bide my time waiting made me laugh though. "Well, you could sew, knit, or crochet!", none of which sounded very exciting to do. Instead of chosen to TRY learning the guitar. My brother Jacob was kind enough to let me borrow his and I'm hoping that I can teach myself just enough Taylor Swift that I can pull off some country-pop teenage angst by the time that phone rings. So far though, the highlights of being home have been a visit from 8 dear friends of mine for a cookout along with some competitive cranium, a scrapbook made for me by the lovely Jen Mejias, and a narrative by Javi and Rebecca, which I'm not sure anyone else will ever be allowed to read. I guess you could say in my down time at home, I've felt a lot of boredom, but I've also felt a lot of love, which isn't something to take for granted. Walking around the rehab facility I was at, I saw so many rooms that, besides the patient, were empty. That was never the case with me. Whether I get that phone call in 3 minutes or 3 months, I will have an army of family, friends, and sorority sisters supporting me in my recovery.

I can't wait to get better and be on everyone else's level once again. And of course I hope it's sooner rather than later. But more than anything, I hope these lungs are a good match for my body and I don't have to think of myself as "disabled" again for a long, long time. Instead, I'd like the tables to turn and have the opportunity to make someone else's day better. One excellent nurse at University Hospital named Monica really inspired me. She was honest about what meds she thought would be helpful to me, she'd come in just to chat when she had the chance, she even took the time to give me a much needed shower, and did I mention she was a UT grad? The love she bestowed upon me was more than any other nurse I dealt with during my month stay. I even cried on my last day in ICU when her shift was over. And I've found myself thinking "I don't want to be Kate Middleton, I don't want to be Lady Gaga *cringes*, I don't want to be Taylor Swift. I want to be a nurse like Monica to where I can make a patient really feel better. That's the impact I want to make. Now if I could only get that phone call, and GET ON with my life!

Silence

As you might have read from my sister, I've had my issues over the past month (pneumonia and MRSA). It could be any day now that I get my new set of lungs. For about a month, I was unable to talk. I'm sure you could imagine how frustrating that is, especially when you're trying to discuss problems with doctors and nurses. I finally got my voice back, with the use of a trachea with speaking valve. I was able to get a hidden camera prefer how I lost my voice in the first place. It sort of went down like this:

Thanks to modern medicine, I finally have my voice back! My phone is always with me, in case I get "THE CALL" that I have lungs ready for me! Pray, pray, pray that it happens soon, soon, soon!

Hello all.

This is Amy, Mary’s sister. Mary is continuing to make incredible progress just as we all expected. In the past four days, she has passed multiple trials on the ventilator and is gradually requiring less and less assistance from it. The goal would be for her to be completely off of it sometime soon. She is being discharged from the hospital today and moving to Life Care Rehab Facility to continue her recovery process. There she will build up her strength and endurance before eventually going home.

Mary’s pulmonary team has presented her with the opportunity for another lung transplant. This is something that we have known was possibly coming at some point in this journey. She has done remarkably well with the lungs she has had and beaten all of the odds up until this point. But, here we are now and she is ready to take on the next challenge. She has been placed on the top of the transplant list for matching lungs. What does this mean? It means that her new lungs and the opportunity to get back to enjoying life and doing all of the things she loves again are right around the corner. We have been advised that being on the top of the list generally requires approximately a 3 month wait; however, we are prepared for whatever timing God has in mind, as only He really knows.
Retransplantation is an option offered to people like Mary who have taken exceptional care of themselves and proven to be strong and otherwise healthy candidates. Here are a few facts about lung transplantation:

Recovery After Lung Transplantation
Immediately after surgery, lung transplant patients recover for two to four days in the Cardiothoracic Intensive Care Unit. During this time patients are likely to:
• require the assistance of a ventilator for a day
• receive pain medications, immunosuppressant medications, antibiotics, and other medications per the Lung Transplant Program's protocol

Patients are transferred to the transplant unit when they are ready, where daily physical and pulmonary therapy will begin. Recent advancements in anesthesia, surgical techniques, and post-operative care have dramatically shortened the time patients spend in the hospital to approximately 14 days.

After Leaving the Hospital
Once they return home, patients are encouraged to return to normal activities to the extent that their energy levels permit and resume outpatient pulmonary rehabilitation as soon as possible. They return to the Center weekly for diagnostic testing and medical care, and will need to adjust to the lifestyle changes associated with organ transplantation. After three months, checkups at the Center will be scheduled monthly as long as the patient's condition allows less frequent visits.

Organ transplant recipients must take immunosuppressant and antimicrobial medications for the rest of their lives. The side effects associated with these medications can be wide ranging, but they can be managed.

As you know, most of this is not new to Mary, but I figured it was good information. Thank you for your continued prayers and support during this journey. We will continue to keep you posted. As a matter of fact, I look forward to her next post because she has a lot more interesting and humorous things to say than I do. :)

the expected, unexpectedly

There's a Reckless Kelly in town, so you know I'm going to be there, even if it means moving a week of treatments around. Secondly it was a date! I love Tacos and Tequila that place popped up first (I got to pick :)). This dream date was supposed to culminate at Abel's, laughing at all those sad folks in Nowitzki garb.

However, as I entered Lucy's Retired Surfer's Bar, which was crowded but not overflowing,I began feeling suffocated to the point where I LEFT A RECKLESS KELLY show. I was into something way more serious that I could have imagined. Eric, my saviour for the night, getting me into a room at the ER. While I waited for my parents to arrive, he calmed me down and even made me laugh. So props to Eric for being more than just a great date but also a life saver. If you never call again cause of my drama, i'll understand why haha.

Pneumonia knocked me down HARD once again my friends. This is my 21st day in the hospital with no food, drink, or speech. Boy did I not expect this. I've made it though nightmares, hallucinations, and missing my dog so dearly over these past days. The more I've been here, the less emotional I've been about missing the life I was living. God has taken away my pride and now I simply have tunnel vision to get better. If this is how it's gonna go, if this is what I'm meant to fight, let me fight it 100%. I see no reason why in 6 months, I can't have a whole new life.

It was kind of an eerie, freeing, feeling. We all knew the day would probably come when I couldn't survive on these lungs. The day is coming and none of us are terrified. I feel confident in my dreams to have good health again. I want a simple life, full of all of you and full of moments not spent thinking about my lungs.

Quote of the Day

Birds sing after a storm; Why shouldn't people feel as free to delight in whatever remains to them? - Rose Kennedy

Thank You!

It feels like awhile since I wrote something on here, and I think it's about time I told you all the good news that is filling up my heart these days.

This week is my first in four weeks that I have not had treatment. Boy, am I happy to be sitting here in my apartment (watching the Dallas Mavericks lose!) and not needing to be nursing a gatorade and popping pain pills. Last week, I felt so weak and spaced out that I was scared to be away from my mom on Tuesday, which is sort of embarrassing to admit when you're 23 years old. For those of you who have ever had a few too many drinks, you could relate to how I felt last week. My eyes couldn't focus, I couldn't hold my head up, I was feeling flushed and having trouble expressing myself.

After my pulmonary embolism and being in the hospital for over two weeks, I remember the feeling of being scared to fall asleep. It may sound dramatic, but when you've been very sick, it's hard to sleep soundly, at least for me it is. This was the first time in months that I experienced that same fear. It was panic-inducing and I knew something was wrong in my body.

Finally, I took myself to the hospital on Thursday and it's a good thing I did. I have a stubborn bacterial infection in my stomach that is almost always acquired in hospitals. As someone who has felt every sort of pain, I still think nausea may be the worst. Luckily(?) for me, I never actually felt sick. I just felt a stabbing pain my stomach and spent most of the day doubled over moaning about it.

I'm on a strong antibiotic now, which I will have to take for 2 weeks, every 6 hours, including in the middle of the night. It's inconvenient, but I am so thankful to the transplant clinic at University Hospital in San Antonio for seeing me immediately, ordering the correct tests, and prescribing the correct medication in a matter of hours. The staff was nothing short of impressive and even drew all the blood from my port with very minimal discomfort to me.

In even better news, the Jerk Store Jerky campaign for AOTA has taken flight more than I could have ever imagined. I always knew I had amazing people surrounding me, but this is just mind blowing. I have never felt so lifted up.

As of today, I have collected $754. This is in 10 days, with not a cent from my parents. It's family friends, cousins, sorority sisters, and even complete strangers who are being beyond generous. Your hearts are so big and I cannot wait to send this money to The American Organ Transplant Association in a few weeks. You are helping people who are experiencing such an overwhelming time in their lives and making things a little easier for them. Also, you're inspiring me, bringing me to tears, and helping me realize that I still have a purpose in this world even though I am not able bodied enough to be in school or working.

6 months ago, I was a very depressed person because I was unable to live a "normal" life. I hated my life and had an immense amount of anger towards God. Since then, I have come to a simple realization: I need to be okay with the fact that I'm not okay. I have recognized that my scenario is in no way fair, however, I can't change it. I've accepted that my life is painful and that I don't deserve what is happening to me. But this is where the two roads diverge. You can take the first road and be miserable, and die mentally and emotionally, even before your physical body wears out. Or, you can take another and you can choose to make a difference in the time you have. If you think that you may have less time on this earth, that's all the more reason to make your mark now. And you are all helping me feel effective in this world again. I am so grateful for that.

I started down that first road for a few painstaking months. And if this disease had taken me then, my tombstone would of had to say 1988-2010, because I was dead on the inside even into 2011. Now I feel more alive than any other time I can remember, and so much of that has to do with all of you believing in me and praying for me. Emotional health is so important to physical health. When it comes down to it, you are all helping to heal my spirit, my mind, and in doing so, you are healing my body. So thank you. Thank you, thank you, thank you.

The Cost of Survival

Jerry Seinfeld once said, if your body was a car, you would never buy it because of the upkeep. I think he was specifically talking about transplant patients.

If you read my previous blog post, you know that I am currently trying to raise money for the American Organ Transplant Association. This charity helps pay for the cost of travel, testing, surgery, and aftercare of transplant patients. To give you an example of how expensive it can be to live as an organ transplant recipient, I thought I would go through my past as a patient.

1. When I was 11, my pediatric pulmonologist sent me to Texas Children's Hospital in Houston for a lung Biopsy. I spent 10 days in the hospital and my family had to travel.

2. Next, my parents and I had to move to St. Louis. in 2000, St. Louis Childrens Hospital/ Barnes-Jewish Hospital was the best place in the country to have a lung transplant. Our things had to be stored and we lived in a house with my older brother and his wonderful wife who so graciously took us in.

3. In October 2000, I had a living donor lung transplant. This included an operation on myself, my dad, and on my brother. 3 surgeries, 3 surgeons, triple the cost. Average cost is $550,000. I was in the hospital for 20 days.

4. The hospital required us to stay in St. Louis an additional 3 months after for follow up care which included weekly clinic visits, physical therapy, and testing. Afterwards, we had to fly up for follow up appointments every 3 months, then every 6 months, then yearly until I was an adult. Think of all the travel cost over the years from 12 to 18.

5. Transplant patients take 2 types of anti-rejection medication. First either cyclosporine, prograf, or rapamune (I take prograf) and secondly either cellcept or myfortic (I take myfortic). Without insurance, a 90 day supply of only one of these anti-rejection medications is over $2,000. I've been on them for over 10 years. That's $120,000 for one medication. I take 11 different medications daily. I cant imagine how I could ever have survived without great health insurance, which so many people don't have.

6. I am immunosuppressed. I have been hospitalized for CMV, pneumonia, broken limbs, low potassium, dehydration, cryptosporidium, shingles, bronchitis, pulmonary emboli, migraines, and renal failure just to name a few.

7. I went into end stage renal failure twice. The second time, it did not reverse. I had a kidney transplant in September of 2009. Kidney transplants are thought to cost between $150,000 and $300,000. I spent a week in the hospital.

8. I had to get a port placed for phoropheresis. Every hospital in Texas refused to place a vortex port because such port wasn't being used here for transplant rejection. Therefore, my dad and I had to travel to Kansas for the surgery.

9. Photopheresis is a procedure where your blood is treated with photoactivable drugs and then exposed to UV light. Without insurance, it costs at least $80,000 and most insurance companies don't cover it for the treatment of rejection. I am blessed enough to have an insurance company that did cover it.

This has only been in the past 11 years. You can easily see that I've racked up millions of dollars in hospital cost over this time. I've been so blessed to have started out with good health insurance through my father's employment and now I simply have to be vigilant that I'm always covered. Also, I am so lucky to have been born to parents who have a plethora of financial wisdom. My dad has always stayed out of debt and saved his money. Now that I have been sick, he has the funds saved up to pay for things out of pocket when needed. It doesn't take very long to find people in this world who aren't in the same place of financial stability that my family is. So many people these days live on credit, pay minimum balances, and owe money on homes, cars, school loans, etc. No one expects to get sick, need an expensive transplant, and a lifetime of aftercare. That's why this fundraiser is so important to me. I am in a place of privilege by no doing of my own. I feel that I need to give back to people who haven't been as blessed as I have been, financially, but are still facing the same struggles I am, physically.

If I can make the battle easier for someone who is fighting on two fronts, that's the least I can do. So please, if you can donate, even a dollar, please do! The life of a transplant patient is exhausting enough without medical debt piling up around you!