One More Night to Run

Can you sum up what's going on in your life in less than 5 minutes? Well, with the genius of Hayes Carll, I tried. I hope that instead of sympathy, it brings more understanding. Love you all for taking the time out for listening to me. - Mary

All You NEVER Wanted to Know About Photopheresis

This past Monday, after a month of waiting for an appointment, I met my oncologist, Dr. Shawnessy to discuss the treatment of photopheresis for my chronic lung rejection. The anticipation had been building for weeks. I had lines of questions and was so anxious for some answers, finally. I took Xanax and blood pressure medication to control my anxiety. Finally, I reached oncology and checked in. Everyone around me was sick. It was such a strange feeling, but a good one. I realized I wasn't alone. So many people are sick, some much worse than me. It gave me a less selfish view of my illness. It really could be worse.

A friendly nurse took me back and weighed me (87 pounds *sigh*) took my blood pressure which was luckily normal and took me through a revealing question and answer session.

Have you ever been diagnosed with any type of hepatitis? No

Is there any chance that you have HIV or AIDS? No

Have you ever had sex in exchange for money? NO

It was 3 pages of questions that any normal person would answer no to. I finally stopped and told her, "these are probably all no. Sorry, I'm really boring." But obviously we still had to continue. After this verbal probing, I went back to the waiting room for another half hour before the good nurse came in with some bad news: the doctor had been called for an emergency and would be back in an hour and a half.

All the weight on my shoulders, the anxiety of the unknown; I felt like I had been waiting on this 10:30 appointment forever. At this point, I was on such a high that waiting until 12:30 felt like waiting another week. I went to the lobby, curled up under my jacket, and tried to relax. Despite the unexpected delay, I wanted to be on target and ready to ask all my questions when the time came.

When I finally met the doctor, he was friendly, made eye contact, and did more listening than most doctors. It was so refreshing and comforting. We began the discussion on photopheresis. My first question, as girl who cares about her body image, was if I would need a central line. The answer, which I sort of already knew, was confirmed. Yes. I will need a central line. My biggest concern was that on April 16, two of my dearest friends are getting married. I have been given the privilege to be Rebecca's Maid of Honor. Any sort of line would not only distract people from her, but embarrass me. After discussing this with him, Dr. Shawnessy said there would be no long term danger to waiting until after the wedding to put in the line and start the treatment. A feeling of relief came over me for the first time that day.

For twice a week, I will be hooked up to a machine which will remove my white blood cells from my body, filter them into a machine, and radiate them with a UV light. The light will somewhat confuse my t-cells before they are put back into my body. These t-cells, which are now abnormal will stop recognizing my lungs as foreign tissue and stop trying to kill them off. Over time, some people will see their lung problems level off, a small percentage will see an improvement, and some people will continue to decline. We will begin doing treatments twice a week for a month and then begin to taper depending on how my pulmonary function tests come back over time.

It doesn't sound like the most promising of treatments, but it is much less harmful to one's body than high dose steroids. It would have no affect on my kidney. And side effects are minimal which include infection, feeling tired, or feeling faint.

I hate the idea of having a central line in swimsuit season. I hate being in hospitals and the fact that soon I will be a slave to them once again. But I love my family, my friends, and my sweet little dog. For them, I will fight as hard as I can till there is no fight left in me. My goal is not to think about these treatments for now. My goal is to be kind, to be generous, and be someone for people to look up to, not to feel sorry for. To not stress about what I cannot change and to just work hard to be the daughter, sister, friend, and student and I want to be, as long as I can.

My new favorite quote:

You can't wring your hands and roll up your sleeves at the same time. - Pat Schroeder

The Weight Needs to be Over

The first picture you see on your right hand side is

me at Alpha Phi Formal in May 2010. I was around

108-110 lbs that night and had a fabulous evening.

The second picture is from New Years Eve this 2010. Still a happy face, but much a thinner one.

This has been the story of my life for as long as I can remember. A little too big then a little too small (even a lot too small). Never perfect. Never satisfied.

Looking back, I think ever since entering the most wonderful University of Texas, I have struggled with my weight. It started by drinking too much, eating queso and wings late at night after fraternity mixers, and all the sudden, I was the heaviest I had ever been.

After months of kidney failure, I began to LOSE weight. Sounds great right? I can eat burgers, cheesecake, pasta, CHEESE ENCHILADAS. Except when you are ill, none of those things sound good. I would go through the Luby's line and have a cup of strawberries and some orange jello as my meal. My body was telling my brain to avoid protein rich food to keep my kidneys healthy as long as I could.

After my transplants, some of those habits stuck with me. I still rarely eat meat, unless its a hamburger. I pick seafood over meat every day. I love most all fruits and will eat any vegetable (even brussel sprouts, which are amazing roasted in the oven). But it's a tough transition. It used to be that any I had a craving, I was instantly granted what I wanted because I desperately needed the calories. Running out for a burger at 10:30 had gone from a way to avoid a feeding tube to a way to make my jeans not zip over a 5 month period.

Now I'm on that same yo-yo deal again. I felt I had gained too much weight after my kidney transplant so I cut back on what I ate, joined a gym and went 5 days a week. Though my weight was slow to come off, my body looked better. My clothes fit different. I felt better, not great, but encouraged. Until July, that is.

Once the rejection set in, followed the CMV, pneumonia, and pulmonary emboli, my weight loss became rapid. In the late summer I was around 110-113 lbs on a given day. Today I range in the high 80's. Nothing fits. Skirts just fall off. Shirts that once fit like a glove look borrowed from another, bigger, girl. All my dresses have to be taken in.

I used to always think my arms were chubby, bat wing arms. Now they disgust me in pictures. I feel like the same girl in a foreign body with no derriere to speak of. No hips or thighs to distinguish me from that of an eleven-year-old boy. And as for breasts, well, I've got a couple ant-bites where those should be. But it's always been that way so I can't blame that on illness.

I wonder if this discomfort in our skin is something we all feel as young women, wanting to be perfect. Or maybe, because my years that were so important to the development of a young woman have been so unstable, I have never been able to acquire the positive body image that other girls have by now. I'm skinny today but will I wake up in 6 months and be chubby again? And then what will I wear? How will I look? Will anyone find me pretty?

These are important questions when you think of dating, marriage, career, public portrayal, self care, etc.

However, I need to remember as I obsess over my weight that what comes first is my health. And IF I could just be healthy forever, I would have the biggest, most gracious smile on my face all of the time. And what could be more pretty than that?

Mental Health

Throughout a lung transplant and then a kidney transplant (not to mention other conditions that have popped up through the years), I have always made it through with a positive attitude and smile. This last bombshell, that my lungs were failing, seemed to send me over the brink. All of the sudden, after the murder of my dogs followed a month later my CMV, pneumonia, and a pulmonary embolism, I realized I needed help. No matter where I went or whom I was with, I was not able to be happy. I couldn't laugh. I couldn't eat and have subsequently lost twenty pounds. My hair has been falling out due to lack of nutrition. My skin isn't the same. I felt achy and tired all the time. There were days I would barely move. I felt as if I had sunk into the deepest of depressions. Was it possible I just couldn't take so many crippling blows in my short life? That eventually one was going to knock me out and make take away my will to even keep fighting?

I was suffering, people around me were suffering. And that's why I made the difficult decision after 11 years of being chronically ill to finally seek some help for my mind and my soul. I had to go through several doctors and several unsuccessful medications before I met someone who actually listened. I was prescribed something for my trouble sleeping and for major depressive disorder. After almost two weeks, I am sleeping almost a full night and I can feel the joy returning to me, even in simple ways, like the tone of voice I use on the phone. I still have a long way in the treatment process, but I feel like what improvement I have experienced thus far is somewhat of a miracle. I am slowly emerging from that dark hole I had isolated myself in. As a usually private person, I am only posting this because I feel a lot of people, especially young adults, have trouble for asking for help. No one wants to be labeled as crazy or feeling they need pills to function. But if you or someone you know has lost that spark to live, please encourage them to look into treatment. Do not see it as a long-term reliance on a drug but rather a stepping stone to get back to a happier place in your life. I am a perfect example of this. Nothing has changed in my physical health. I'm still very sick and may or may not get better. But I smile more, I laugh, I try new things. It wasn't always my lungs holding me back from living my life. It was also my mind. Now I am beginning a sense of freedom that I haven't experienced in months.

Please send this on if you know someone who you think they may be depressed. It can be SO MUCH BETTER! Otherwise, God bless and thank you for reading my rambling thoughts.

A Little Daily Thought.

Some people feel guilty about their anxieties and regard them as a defect of faith but they are afflictions, not sins. Like all afflictions, they are, if we can so take them, our share in the passion of Christ. - CS Lewis

Welcoming Peace

The past week has given me such respect for The University of Texas. They have made my medical withdrawal process more quick and painless than I could have ever imagined. People in my department whom I have never met have sent me their thoughts and prayers. It has been one less stressor in my life that I am waving good riddance to. When I was in school, I didn't mind the class attendance (unless of course, the weather was less than perfect). I didn't like studying. I did it though. I got good grades. And I miss getting closer to accomplishing something as amazing as a degree from this great university. But for now, I need to focus on my health. Anything else just feels like clutter.

My physical and mental health has become my top priority. I'm reading a book to help me manage being constantly short of breath. Also, I just got another in the mail about learning to be at peace with chronic disease. I have always prescribed to Dennis Prager's theory on happiness which is basically: Act happy if you don't feel it. However, that is much easier to do when you're having a bad day. Having a tragic six months and facing the idea of major surgery and possibly death is very different. It is hard to understand God, the universe, and the people around you when something so unfair is happening and you are suffering so slowly. What I am trying to do is be content in my good days and grateful for the amazing people in my life who are going through this right along with me.

Another is to use some very liberal scissors and cut out everything in my life that is causing more grief and anxiety. Obviously, the first thing was school, tests, and papers. Focusing on any type of timeline when you're unsure of your own is simply impossible. Secondly, I hate to say it, I have had to cut out people. There's people who are there for you, even when you wanna be alone. They're the ones who push you to go out and live your life even when chow mein and Sex and City reruns seem like the only appealing thing on Earth. And then there are people which are the opposite. There's people who will let you fall down into that depression you're constantly fighting. Toxic people need to go. Even if it's only for a few days, or weeks, it has to be done to keep your own sanity in tact. Being ill, you already feel like time is against you. The last thing you wanna feel is that people are also against you.

By cutting out the pain, stress, and worry in some parts of my life, I think it's only natural that I'll feel physically better. Obviously I won't be healed, but I will be more healthy to pursue this path ahead of me with less anxiety. It's exciting to think I could get some pieces of me back while in this limbo stage before treatment and transplant evaluation begins. It's like I'm reading ahead on how to get better. And I really can't wait to see what I learn.

This week, for now.

I've had a lot of things come up in the past week that made some major changes to my plan for the semester. My next attempt at going to class was another miserable experience. I laid on my bedroom floor, feeling that I couldn't move. My breathing became so labored that it reminded me of the weeks following my blood clots. My stomach was churning. I felt it was physically impossible for me to even move. All I could think about was not throwing up. It became clear to me this was a problem that was not going away. It took hours for the feeling to subside. The panic attacks come on so strong and the onset is so unpredictable that it's become a worry that the next attack is around the corner, in a crowd, or around people who simply won't understand and will think I am insane. If I was a celebrity, this whole panic attack thing would be considered chic. Doesn't it just sound better? Oh, She's in her trailer having a panic attack. She will be out in a bit. See? Reason #938592085 that I need a reality show.

Tuesday was my all day appointment at University Hospital Transplant Center. First begins with check-in at admissions, and then labs. Labs used to be simple until they poked, prodded, and ruined all my veins. Now I take a trip to the Oncology wing of the hospital. A PIC specialist takes an ultrasound machine and along my arms. Once he finds a vein, we use a large needle to get deep into the vein. We got all of the important labs before the vein blew out.

The next trip is to the Pulmonary Function Lab for PFT testing. This basically consists of normally breathing into a machine for several seconds, then taking as deep a breath as you can and pushing it out of your airway for as long as you can. They are painless, but my whole appointment rides on these things so it's easy to get anxiety about them. The results were better than 2 weeks ago (though only slightly) which made me smile and not so hesitant to go to Radiology.

Radiology at this hospital is like a black hole. Some of these people have probably been in the waiting room for days, watching soaps, not even realizing that it's a different day of the week and it's snowing outside. I am always getting normal chest x-rays so I get called pretty quickly. I always have the discussion about putting the gown on or not. I wear a tee shirt and a tee shirt bra for a reason. I'll slip the bra off for the x-ray if you want to be really careful, but don't make me totally undress into a gown that is meant for someone 600 lbs (aka your normal sized patient). Once that battle is solved, the real war begins begins. THE PREGNANT/ NOT PREGNANT discussion.

You tell them that you are not pregnant and their first reaction is to say "you know, you can tell us, we won't tell anyone" . So you say it again "I'm not pregnant" and you have to write the date of your last period and sign that you aren't lying. I imagine most girls are like me and just make up a day. Like, I don't know. It's one of the few things NOT stored in my iPhone. Not to mention, the way I look and dress for these early morning hospital visits, I don't see why the technicians are thinking I'm getting impregnated every time I turn the corner. WOOF!

So I finally get into seeing the doctor. The famously helpful, Dr. Luis Angel. It's pronounced Ang-el (like "the" in Spanish) if you're wondering. I expressed to him all my problems and I am happy to say that he sat and listened, really listened to all my pains and complaints, both mental and physical. At the end of our conversation, we had the beginnings of a game plan. It was stressful to think of the new treatment I will be starting and having to put school on hold (AGAIN), but also so comforting to know I am in the hands of a doctor who truly believes that I am determined to get better, motivated to have a life after this illness, and smart enough to make a difference in this world, given a chance to get back into the game of life. If a man who has seen hundreds of sad and hopeless cases to says that I am not one of them, who am I to second guess him?

I'll post more as I know more. Hope you are all staying warm as Abel and I am!