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!

Jerky to Save Lives!

An excerpt from my Facebook, which also applies to all my blog followers!

So here's the deal, for those of you who don't know, I had a bi-lateral lung transplant in October of 2000. I've been suffering from chronic lung rejection since July of 2010. Since that time, I've been medically withdrawn from school and am currently undergoing photopheresis treatments to stop (and possibly somewhat reverse) the lung rejection.

I have been blessed to be able to travel across the country and get the most advanced treatments and expert advice throughout my life. However, there are many people who are not as fortunate as I have been.

The American Organ Transplant Association is a wonderful charity out of Houston, TX that helps arrange free transportation for patients to get to the best hospitals for transplant evaluations, surgery, and aftercare. They also help patients save money on prescription medications which can be thousands of dollars a month without insurance, along with promoting organ, marrow, and tissue donation to the public.

To help raise money during this time when I am unable to be in school, I am making homemade beef jerky to sell to you all! 100% of any profits or donations will be given to AOTA. For $5, you can order a bag of beef jerky for your summer road trip, fishing excursion, or late night snack craving! Orders can be shipped for an extra $2!

You can pay me via cash, check, or even via text through Venmo (it's super easy)!
Contact me through phone, facebook, or just stop by if you're hungry for jerky or wanting to make a donation! I'm back and forth between San Antonio and Austin and want everyone who's interested in helping to be able to!

Everyone in my family can attest that this jerky is amazing (it's a secret family recipe!) and I can promise you'll be making the lives of transplant patients better! Thanks for reading all this!

Remember: BEFF JERKY:$5. Satisfy your taste-buds and help save a life!!!
Check out AOTA online for more information on them! http://aotaonline.org/default.aspx

Mary Katherine Burkholder
210 383 5546

910 W. 25th St. Apt. #310
Austin, TX 78705

Continuing Education

I love sharing good news with you all, and here is my good news for today: I will be back in school this fall. I have sent in my application for re-admission (I am currently medically withdrawn) to the University of Texas at Austin.

For those of you who don't know, I am less than 2 full semesters shy of a bachelor's degree in Health Promotion and Fitness with a minor in Theatre and Dance (I used to be really into theatre and even started out majoring in it. I figured out that it WAS NOT for me after a semester so I used it as my minor).

My long term goal is to go to nursing school. I believe that my purpose in life is to work as an advocate for other people who are chronically ill and help make their journey easier. I can't wait to continue on this path of healing and make a bigger impact in the weeks, months, and years to come!

Treatments and Living Life

I'm into week 3 of my photopheresis treatments. I'm finally settling into the routine and what to expect. Every Monday and Tuesday, I arrive at Main Methodist Hospital in San Antonio and head to the 10th floor Apheresis room.

My blanket, my laptop, and my amazing mother are always with me. It's quite the prep-work to get me ready to start the treatment. I put on a cream form of Lidocaine (a skin numbing medication) an hour before treatments, which does little. It does however, numb the most superficial part of the skin, so I figure it's worth the effort. The nurses have to create a sterile field, which is an area that is free of contamination from microorganisms. Nurses must wear sterile gloves, and it's a two person

job. They must clean the port site, allow it air dry, and then prepare to insert the needle. The needle is not inserted in the same place twice for as long as possible, so the nurses stick in a different place, moving in a clockwise motion every day.

The needle insertion is very painful, but I think I'm getting used to it. The most difficult problem that we have had is securing the needle. It is large, between one and two inches long, and has no sort of apparatus to hold it in place. Because of this, I'm always covered in tape and gauze. Still, today, the needle popped out, and had to be pushed back in which was not pleasant and got my clothes sprayed in blood. I have to say though, I felt pretty cool and tough walking out of the hospital bloodied.

The actual photopheresis treatment is a 5 step process in which all your blood is filtered out and subjected to the UV radiation. I can only guess that it's because the human body holds about 5 liters of blood and doctors don't want you losing too much of it at one time. The final process of putting the blood back in your body can take anywhere from 15 to 90 minutes, just depending on the day. The entire process takes between 3 and 5 hours and is exhausting. I have watched them start cleaning the machine after my treatments and I noticed that not all my blood is put back in my body. A guess would be that I lose between 1/2 and 1 cup in every treatment, just from all the leftover blood I see. Because of this, I can feel weak, even faint after.

My entire body hurts after the treatments. It's difficult to explain other than saying I feel uncomfortable all over. My body can be sore and achy to the point where I need pain medication. This lasts through Wednesday, and I am pleased to say that by Thursday, I do not need any narcotics and am basically pain and exhaustion free.

Being the first person in Texas to use a Vortex port for photopheresis, I am a literal pin cushion for nurses to learn about this new technology. It's both a blessing and a curse. Sometimes, the nurses screw up and have to insert the needle 2 or 3 times before they are able to access the port successfully. This causes a lot of pain and anxiety, but there is a huge upside to what I am doing. I see other patients who have the traditional type that sticks out of one's neck. I can't imagine having two lines protruding out of me all the time. This Vortex port is so low maintenance and much more ascetically pleasing, especially for a young woman. In fact, I even got to lay out at Barton Springs on Saturday with one of the sorority sisters and I didn't feel self conscious at all!

On an even bigger note, by demanding this more subtle looking port, I can only pray that I am teaching an entire hospital system how to use a more modern medical device. I hope that because of the results with my Vortex port, patients in the future will have the option to come into the Methodist system with nurses already familiar and willing to use this tiny access port as opposed to the traditional line. If there's another Mary Burkholder type girl out there, who one day may need photopheresis in San Antonio, I hope she too will be able to wear a bikini in the summer and still feel pretty.

The past few weeks, I have felt almost high, despite the fact that my health hasn't improved one iota. I have been filled with so much joy. I love life again and no longer feel cursed by illness. Every time that I start to feel down about life, the fact that I'm not graduating with my friends, and not working, I remember that God has a different, still wonderful plan for me. He is telling me that school will be later. I'm applying to restart in the Fall, by the way! For now though, I need to do something else. Recently, I've made food for my friends that were taking finals. But now, I want to do something bigger. I have a general idea of what I want to do and how I want to doit, and I'm so excited to test this idea out. If my trial run this week is promising, you will all be hearing about it soon! Thank you for your continued prayers and support! They are lifting me up more than I could have ever dreamed of!

Keeping Up Appearances

A person might see me driving around town some time, pull up in a handicap spot (yes, I have a permit), and roll their eyes over witnessing a privileged little princess getting the primo parking spot. They may scoff, "There's nothing wrong with her! Save that for a real handicap person!"

Little do they know, had I not been able to park so close to my destination, I would be struggling to breathe.

To an outsider, I look like a slim, well groomed young woman. I'm well dressed. I wear enough make up to look healthy. I try my hardest not to look sickly. After all, the Gospel of Matthew says, "And when you fast, do not look dismal, like the hypocrites, for they disfigure their faces that their fasting may be seen by men. Truly, I say to you, they have received their reward. But when you fast, anoint your head and wash your face, that your fasting may not be seen by men but by your Father who is in secret; and your Father who sees in secret will reward you"

OK, let's get real here, I really do hate when people play up their illnesses to their advantage, or act more dramatic than is necessary. Like REALLY hate it. But also, I'm a young woman in my early 20s! I want to look healthy! I want to fool the world and everyone who doesn't need to know that I am the healthiest thing they've ever seen! But I have secret: my hair is falling out and has been for months. There's several reasons that this is happening:

1. I'm on blood-thinners which cause hair loss. I'm stopping those tomorrow though. It's been over 6 months and after a scan next week, I won't have to think about blood clots anymore.

2. I'm sick, duh. My body is poorly oxygenated at times.

3. I've been stressed in the past. I can openly admit that I let the stress of a serious illness, among other things, get to me. I can honestly say that now I have such a better grip on things though. So hopefully that factor goes away.

4. I've lost a lot of weight. I went from being 114-115 at my heaviest to 81 at my lowest. Definitely not healthy. I'm steady now in the low 90's and trying to eat right to keep it that way.

I'm sure everyone around me has noticed my extensions that I clip in to try to achieve the "Texas" hair that I so desire. I also need to add that Heather at Topaz Salon in Austin did a great job of that for my formal last week, if anyone in Austin is looking for a hairdresser! This past week, I finally broke down and saw a dermatologist about my hair loss. Unfortunately, for the reasons I named above, there was not much help she could offer me other than trying to stay healthy, relaxed, and patient about the process. With that being said, please offer any personal tips and tricks your may have to help hair grow quickly, and thickly! I'm desperate!

On a completely gratuitous note, I also just started on Latisse yesterday as well. The product promises to help you grow more of your own lashes, which are also longer and darker. If I can't have hair on my head, maybe having some on eyes will be an adequate substitute. Here's my before picture at Week 0. I'll post another at Week 4 and Week 8 and so on! But seriously, hair tips! I want to keep looking like I don't deserve that handicap spot! Love, Love, Love!

We Got Him

This is about a week late, but it's given me some time to mull over the death of Osama Bin Laden. I always think it's better to wait when you have strong feelings on something and sleep on it, think it over, before you put your opinion out there. I felt such strong emotions. And after a week, I'm ready put out my thoughts (for what they're worth) on the situation, from a Christian prospective. Beginning with some of the statistics from September 11, 2001, via New York Magazine:

Total number killed in attacks (official figure as of 9/5/02): 2,819

Number of firefighters and paramedics killed: 343

Number of NYPD officers: 23

Number of Port Authority police officers: 37

Number of WTC companies that lost people: 60

Number of employees who died in Tower One: 1,402

Number of employees who died in Tower Two: 614

Number of employees lost at Cantor Fitzgerald: 658

Number of U.S. troops killed in Operation Enduring Freedom: 22

Number of nations whose citizens were killed in attacks: 115




Ratio of men to women who died: 3:1

Age of the greatest number who died: between 35 and 39

Bodies found "intact": 289

Body parts found: 19,858

Number of families who got no remains: 1,717

To those of you who remember that day, I'm sure you can't erase the images of people jumping from the 90th floor of the World Trade Center rather than be incinerated by the flames engulfing the towers. You probably remember the phone calls played from passengers on United flight 93 to loved ones. It was a day that was truly scarring for every American who was glued to the TV, watching these events unfold. The "mastermind" behind these attacks was a name few of us were very familiar with: Osama Bin Laden, who had previously been quoted as saying: Allah has ordered us to glorify the truth and to defend Muslim land, especially the Arab peninsula ... against the unbelievers. After World War II, the Americans grew more unfair and more oppressive towards people in general and Muslims in particular. ... The Americans started it and retaliation and punishment should be carried out following the principle of reciprocity, especially when women and children are involved.

Men, think of your wife. Mothers, think of your children. Osama Bin Laden would have killed them if he had the opportunity. I've seen so many Christians posting things on Facebook, Twitter, and speaking through radio about how they find it hard or nearly impossible to rejoice in another life lost. Many note the words of Christ saying "turn the other cheek", which is understandable when it comes to a lie or sour feelings between an acquaintance or even a family member and yourself. But to do the same with the mass murderer, life ruiner, a

person who has maimed tens of thousands of lives, is wrong and only inviting more death.

I take you back to the book of Exodus, when Moses parted and crossed the Red Sea. After all the Hebrew people had safely passed, he once again raised his staff, and the water came and engulfed the Egyptians. After this, Moses composed a song of thanksgiving to the Lord, which can be fully found at Exodus 15:1-18. Here is an excerpt:

² “The LORD is my strength and my defense;
he has become my salvation.
He is my God, and I will praise him,
my father’s God, and I will exalt him.
³ The LORD is a warrior;
the LORD is his name.
⁴ Pharaoh’s chariots and his army
he has hurled into the sea.
The best of Pharaoh’s officers
are drowned in the Red Sea.
⁵ The deep waters have covered them;
they sank to the depths like a stone.
⁶ Your right hand, LORD,
was majestic in power.
Your right hand, LORD,
shattered the enemy."

I have seen quotes from inspiring figures in the past, such as Dr. Martin Luther King Jr condemning taking human life, but I felt it was important to go to the Word. Though it is true that God does not "delight in the death of the wicked", one can only wonder if his disappointment lies more in the actual killing or in the fact that one of His creations turned away from Him and had to lose his life for because of that.

To those of you who are against capital punishment under any circumstances, obviously there is no convincing you that the killing of Bin Laden was just. To those of you who are against capital punishment, but relieved in the death of Osama Bin Laden, I ask you how you can condemn the death of a man who has killed one and savor the death of a man who killed thousands? Either way, a life was taken and a group of family and friends was emotionally destroyed by the actions of that man.

Usually, I'm very apathetic on matters like this, but for some reason, the reactions I saw of solemnity were very upsetting, especially when God was used to justify those feelings. Twisting the Word of the Bible to fit one's personal views is exactly what the Islamic extremists have done with the Qu'ran. I will be the first to admit that I do not understand the mind of God. I look to the Bible, and try to figure out what one should think about this situation. But when something is so upsetting, so mind boggling as what happened on September 11, 2011, it is hard to find a concrete answer of how one is supposed to feel about the death of Osama Bin Laden. I just wanted to share my voice along with some Biblical truth for everyone to digest. And in the words of Forrest Gump, "That's all I have to say about that".

When the righteous prosper, the city rejoices; when the wicked perish, there are shouts of joy. - Proverbs 11:10

Never Take Yourself too Seriously

“Laugh at yourself and at life. Not in the spirit of derision or whining self-pity, but as a remedy, a miracle drug, that will ease your pain, cure your depression, and help you to put in perspective that seemingly terrible defeat and worry with laughter at your predicaments, thus freeing your mind to think clearly toward the solution that is certain to come. Never take yourself too seriously" - OG Mandino

A Shot to the Heart

I had my first photopheresis treatment today. The flying to Kansas City, the port placement, and the recovery seemed to be the worst of it. Then there was the waiting. A group aphaeresis experts had to coordinate their schedules and come in from Chicago, Phoenix, and Round Rock to oversee my first treatment. I showed you in an earlier post what the port looks like. Well here's what the port looks like in me. I circled it, because the port is actually pretty easy to miss. It's been a blessing how inconspicuous my little Toto (thanks Kyle!) looks, and cosmetically, I couldn't be happier with the results. But now it was time to put Toto to work.

The needle used to access a vortex port is large. And it thick. And it's scary. I'm a little girl with little veins who is used to being poked by butterfly needles. So this big thing coming at me caused a lot of anxiety. The nurse tells me to take a deep breath in, so I do, and POW (see video below) right into to chest. My reaction was far less dramatic, however, that's how I felt on the inside. The amount of instant pain took my breath away. I couldn't speak, cry, inhale, or exhale. And the worst part about it was that they missed! The entire needle stab had to be done once again. After that trauma and some ativan, was able to relax. The procedure was long but went smoothly from there. I'm tired but not as exhausted as I thought I would be. I feel blessed to have made it through this first day successful.

Toto has done it's job for today. And he will have to come through tomorrow. I was given lidocaine to put on the port tomorrow so I will be numb and not have to experience the unreal pain I felt this morning. But in the end, if pain, sticks, and stabs are what it takes to get me well, bring them on all over my body. I'm 100% committed to this treatment. I have confidence in my doctor and the sweet, gifted nurses in aphaeresis, I feel comfortable asking questions, and I am at peace with my decision. This small step forward has helped me see more of the future I imagine which includes graduating, nursing school, a husband, a family, and helping other like me for as long as I'm blessed to be on this earth.