Sunday, March 25, 2012

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.

Monday, November 14, 2011

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!

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

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!

Tuesday, November 1, 2011

A Filling Autumn Meal is Already in Your Pantry!


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!)

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!

Tuesday, September 13, 2011

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.

Sunday, September 11, 2011

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.

Friday, September 9, 2011

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

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!

Thursday, September 1, 2011

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.