The heart is the substance.

Tuesday, June 23, 2009

movement

The surgery feels so close today. I've got my plans pretty much in order for the next three weeks and then it will be here. I sent off my insurance check today, which makes me feel better about the whole thing. I just can't believe this is really going to happen. I suppose once you undergo major surgery, it won't seem as scary the next time.

I've been wondering what to pray for today. I am not sure. Sometimes when I don't know what to say, I just repeat Jesus over and over again. Maybe that is what I will do.

...

Lyric of the day,
"I want so badly to believe that 'there is truth, that love is real'
And I want life in every word to the extent that it's absurd."
-The Postal Service

Monday, June 22, 2009

pilgrimage

When I decided to take time off before the surgery and just hang out this summer, I began to wonder how I would fill it up. I'm not very good at waiting. Some days feel like they will never end, but I appreciate the freedom to sleep in and read a book, to walk in the morning, to go to the river, and to think.

This week I've decided to take a little pilgrimage to Lake Junaluska. Lake Junaluska is a Methodist retreat center and retirement community in the North Carolina mountains, outside of Asheville. It was at this place that I fell in love with North Carolina. I went to two "Youth in Missions" week-long camps there. I remember having intense spiritual experiences in this place. The first time we went, we were sent on a faith/trust walk... you know the kind. You are blindfolded and led in a line. You must trust the person leading you as they guide you on steps, over rocks, or whatever other obstacles are in the way. At this particular walk, we were walking for a long time... we were led from one side of the lake about a quarter the way around to the lighted cross above the lake. The cross is not particularly beautiful. It is literally round light bulbs attached to a large cross. I don't remember what they said to us that night or what was preached. I imagine we sang songs like Lord I lift your name on High and Shine Jesus Shine. I remember tears streaming down my face as I embraced others in my youth group. I remember being on my knees and praying. I don't know what I said to God that day, but it was real and fervent. The kind of prayers you pray when you have no doubt God is holding you. The kind of prayer you pray when you are in your early teens and your passion for the Lord overwhelms you.

It isn't that I think that passion goes away, but there is a growing up that happens and a loss of innocence that changes us. Once you have seen certain things in the world, it seems virtually impossible to return to that place where your heart burst for Jesus. So, I'm going back. I'm going back to see it, to feel it, to remember. I know it will not be the same, nothing ever is, but I am looking forward to climbing that hill and walking around the lake.

I know that it will remind me of being in youth group. It's funny to think back on youth trips- the wildness of couples kissing in the church van and the powerful songs that became themes of the summer. The way you saw people's true colors, for better or worse. I'd be curious to see what people thought of me when I was a youth. Did I smile a lot? Was I shy? How did I talk about God? Did I include my neighbor? Did I seem to know what love meant?

I get pretty nostalgic when I think back to that time in life. It was before divorce, before marriage, before sickness, before heart surgeries were on the table. It was before I knew what a child with cancer went through and before I saw a dead body. It was before all of the things that made me wonder how the world could really be good.

I think this is why we pray for new birth and new life each day. We have a desire and a hope to see the world anew and to believe in re-birth in all things. Revelation 21 has been one of my favorites for a long time. "Behold, I make all things new." I pray that God will continue to give me new eyes and restore my soul that I might return to a place where hope is my breath. Can we be innocent again? Can we see others how God sees them? Can we remember that each of us was once a helpless baby and only grew because someone fed us and took care of us?

God, take care of me. I am still a baby, an infant. I cannot live without you. I hope each day that you will pick me up, feed me, change me.... teach me about the world.

"New every morning is your love Lord, and all day long you are working for good in the world."

Friday, June 19, 2009

small window into my head (and i guess you can include my heart)

I have come to the conclusion that I am much better at blogging when I don't know that people are reading it. That is a little ridiculous considering the point is for people to read it.

Here's the latest...
I'm a little concerned about surgery right now. I will get okay for a couple of days and act like it is no big deal and if people look shocked when I tell them I brush it off and appear strong and like it's going to be and nothing bad will happen. There are also times when I think... If I have to have my chest opened up and have a huge scar down my middle I am not going to be a happy camper. I imagine waking up from surgery to find out that they couldn't repair the valve and that they had to put a new one in. Not only would that mean a huge ugly scar, but also mean that another surgery was undoubtedly in my future.

Don't get me wrong, over the last few weeks I have actually been a pretty positive person. I have been very confident that all of this was going to be fine. My housing situation worked out so I didn't have to move, I got a job, and I get to have one of the best surgeons in the world work on me. Things really fell into place and I know it was God's work. I have no doubt that God is going to sustain me.

So, I go between fearlessness and anxiety. Many of you know that I have a bit of an obsession with courage, and I hope I am learning it. There is a temptation to be wreckless- to go sky-diving, eat poorly, not care, be selfish, etc... because well... if I die, I'd like to have a few last hoorah's. There is a temptation to be timid- to lay in bed, to wallow in sorrow, to feel sorry for myself, to be jealous, to be stuck, to hate life... because well... what does it matter anyway, life is fleeting and pointless. So, courage is that place in the middle that I am trying to live. To be courageous enough to live and yet vulnerable enough to admit my fears.

...

My mother sent me a bracelet for my birthday with a Ralph Waldo Emerson quote on it, "What lies behind us and what lies before us are tiny matters compared to what lies within us." I thought that was really cool, and although I won't be able to wear it to surgery, I feel like it might be a good theme for me to hold onto right now. It's easier to be grateful for the present right now.

Transcendentalism has also always interested me. I was actually reading a short story by Louisa May Alcott this week that speaks to an attempt to create a Utopian community resting upon transcendentalist ideals... and it didn't work.

I like when things in life overlap or one idea is referenced in another area of life where you least expect it. (i.e. picking up a book and reading a short story about transcendentalism AND getting a bracelet in the mail from my mother with a quote from a transcendentalist). I particularly appreciate this phenomenon when it is written- almost like you stumbled upon something you were seemingly meant to read. It had been in that book the whole time on your shelf, but at that moment, you read it and it had meaning to you when it might not have had meaning if you read it another time. Timing is everything.

...

I saw the movie Elizabethtown last night. I thought I was going to be watching a romantic comedy. I was wrong. It is a story of grief. It was one of those movies that I would surely have liked at any other moment, but since the death of my grandmother, the death stuff is a little close right now. It is a rich movie though, if you can stand it.

...

My friend is reading a book about death called Stiff. It is very clever and funny, for those of you who think death is interested (I'm speaking to all you chaplains out there). It is irreverant at moments, but I'm okay with laughing about death. I hope to read the whole thing at some point. It also contains lots of interesting historical facts.

...

So God, are you preparing me for something or is all of it just coincidental??

Wednesday, June 17, 2009

Birth- day

Yesterday was my birthday (26th to be precise). I spent most of the day at the Virginia Annual Conference, meeting the new pastors I will be working with and making a few contacts up in VA. I got to attend the Duke luncheon with my District Superintendent and his wife (also a pastor). They are awesome and my surrogate parents in Virginia. I drove up through Williamsburg to check out a little cottage, but I didn't get to see inside it. I did get to drive by Colonial Williamsburg! I was so excited and I can't wait to go take the whole tour (I'm such a nerd).



I drove to Richmond to visit my friend K. We went to dinner at the cheesecake factory and K got the waiter to construct a quartet to sing happy birthday. They also spelled happy birthday out on the plate. AND we ate outside (my favorite).

I am thankful for all of the friends who called and messaged to wish me a happy birthday.


....

I have been having very vivid and strange dreams lately. Many of them include various folks from my past. It is always strange when someone shows up in a dream that you haven't thought about or seen in a long time. It seems sudden, but it does not always seem random. I always wonder about how that person is doing, what they are doing. I had a dream that a friend from college was an artist and made these grand metal sculptures.... random.

In case you were wondering, I do not like dreaming... it disturbs me. And while they say that dreaming is a sign of good sleep, I always feel like I don't sleep as well when I dream.

What do dreams have to do with hearts, you may ask...??? I am now taking a beta-blocker for my heart and one of the side effects is dreaming. Annoying and true. In general, I would say I am a person who rarely dreams, but since I have been on the medication, I am not able to sleep without dreaming. I'm guessing I will get used to it.


Sunday, June 14, 2009

One month countdown

It is officially one month until the surgery. As I promised, what follows is the story of how I came to need a heart valve repair.

Finding out about the "heart murmur."
As a sophomore in college, I began experiencing numbness in my arms and face, dizziness, and even fainting in a choir concert (it was during the spiritual 'Ain't got time to die,' no, I'm not kidding). I was also experiencing migraines, which was only mildly impeding my schoolwork. So, I went to the doctor. As he listened to my heart, he said, "did you know you had a heart murmur?" (a question I would hear from every doctor for the next 5 years). I was sent to get an echocardiogram, to see what type of murmur and the status of my heart. I was diagnosed with mitral valve prolapse (meaning the mitral valve does not close at the way). I also had mild regurgitation or insufficiency (meaning that the blood ran backwards into the left atrium). At this point, I was told to take antibiotics when I went to the dentist and watch for signs like shortness of breath and swollen ankles. So, I did. I took some antibiotics before each dental visit.

Endocarditis:
In May 2008, I moved to Durham, NC to begin a chaplaincy residency at Duke University Medical Center. In late May, early June, I began to feel a little strange. I would go up to the floors and feel dizzy if I stood on my feet too long. I would go home at the end of the day fall asleep, completely exhausted from the day. I felt somewhat sick on certain days, but it was hard to pin down what was really wrong. I began to have a very slight fever. My insurance kicked in on July 1st, and on that day, I went to "urgent care." I was put on antibiotics to treat "tick fever," which is very common in the summer months in this area. A week later, I had a fainting spell at work, which sent me to the ED. After the appropriate amount of blood removed and they felt they had asked if I was pregnant enough times, the doctor came by. She said that I had an elevated number of band cells (immature white blood cells). She said this could mean three things: I had an abnormal amount of these just by chance, I had an infection, or I had cancer. Needless to say, the next days of anticipation for more tests to come back were a little tense. She called me at the end of the week and told me that I did not have cancer, but requested that I set up an appointment with a primary physician as soon as possible. I saw a primary doc the next Monday. She did the swab test for strep, which came back negative. The other blood work showed that I had an infection and because of my heart murmur, I would need to go to the hospital and get some IV antibiotics. She stated that I would simply go for a little while each day. I headed over to the ED again, where my doc had called ahead to fast track me. Pretty soon after the doctor looked at my blood samples, he informed me that I would not be going home. I would be staying in the hospital to be treated for endocarditis (an infection in the lining of the heart). By this time, my finger was throbbing. I thought I had burnt it, but learned later that this is a sign of endocarditis. I also had marks under my fingernails where pieces of the infection broke off and traveled to the extremities. Five days later, I was sent home with a PICC line in my arm, where I would administer antibiotics to myself each day for the next 3.5 weeks. Sparing you the details of this process, I would flush my line each morning and do antibiotics at night, so as not to interfere with work. I wore a fashionable sock over my arm, which a friend actually commented "looked cool." (That's me, the image of cool.) The whole experience was somewhat surreal. They actually let normal people inject meds into their arms??? Weird. I even travelled with my line and antibiotics to a friend's wedding. I was thankful to go, even if I had a tube in my flesh and a sock over my arm...

I recovered well, and felt as good as new in a couple of months. My cardiologist and infectious disease docs felt like I was doing well and placed no restrictions on my care. My responsibilities were to go to the cardiologist once a year and get an echocardiogram and to take my antiobiotics before any procedure that could allow bacteria to get in my bloodstream.

May 2009
I went for my year check up. They actually squeezed me in a week late, because I was home for my grandmother's funeral on my original appointment date. I did my echo first, then saw the doctor. Dr. Bashore came in, listened to my heart (he's a cardiologist after all), and then said, "let's sit over here and look at your echo." He explained extensively the workins of the heart and that it appeared my heart was having to expand more than before to pump the blood through my body. He acknowledged that the numbers were on the edge and that it was getting time to start thinking about having my valve repaire, probably in the next year. I laughed to keep from crying, then I teared up and I think he knew that the news was not expected nor desired. He wasn't completely convinced that the echo was accurate, so he sent me for an MRI that afternoon. I trucked myself back to Duke (I was on-call... ha.) H came and sat with me as I waited to have my first MRI. The nurse did a good job placing my IV and asked me what type of music I wanted in the headphones, since they had satellite radio. I requested folk, to which he replied, "we don't get that request very often." It was a pretty sad folk station actually, but that's beside the point. Throughout the MRI, I had to hold my breath in intervals of about 10 seconds so they could get pictures of my heart. They also did some pictures with contrast dye. Later that night, I called the doctor to confirm the findings which said I would need the valve repaired.

I sprung into research mode, attempting to find out as much as I could. Unfortunately, I breathed "heart valve surgery" as my google search topic, which I believe was less than healthy. It was all I could think about. The grief process started pretty early, denial, anger, etc. (If you don't know anything about the grief process, I vote you check out this video: http://www.youtube.com/watch?v=XCoaBN6iOu0 )

I'll spare you the details the intensity of that week.

I got to talk to the nurse practitioner the next week, who answered my questions and set me up an appointment with Dr. Glower, my surgeon. We all agreed that it would be best to get he surgery done while I was in transition, before I started a new job and while I could utilize the Duke health system.

The meeting with the surgeon went well (even though I was at Duke for about 4 hours). I really liked Dr. Glower. He said he would do everything in his power to repair the valve and not to have to replace it. We decided that if he gets in there and needs to replace the valve, we would go with a biological valve (cow or pig), to eliminate the need for blood thinners and keep the option of bearing children. There are some things he just won't know until they see it up close. I will undergo what is known as a "minimally invasive surgery." They insert a camera into your side through the ribs and use the other usual veins to insert the tools to fix the valve. This surgery has been performed for about 20 years and only certain medical centers do this type of surgery. Dr. Glower is one of the people who does these every day. They will remove the vegetation (scar) that formed when I had endocarditis. They will also insert a ring around the valve to help it close properly.

I am sure I have not included every detail or answered the questions you might have. Feel free to post your questions here.

Sunday, June 7, 2009

2:34am

It's the second night in a row I have been up at the wee hours of the morn thinking about surgery, life, endings, next steps, etc. I also tend to sing songs, which does not help with getting back to sleep. Tonight it's a combo of Galileo (Inidgo Girls) and Long Ride Home (Patty Griffin).

Let's just be clear, worry keeps me up at night.... literally. My pastor graciously told me the other day that he thinks it is nearly impossible not to worry. Worry is part of the human condition. We are bound to our thoughts more than we would like to realize. When I do realize how much my thoughts keep me still and often afraid, I am curious to see if I can change them. But I tell you, some of those thoughts are so hard to shift. As you may know, various types of cognitive therapies have been developed to help you change your thinking so you can in turn change your behavior. Hmm.

For those of you who do not know, I am in the garden state right now. The windows are open (not everyone has central air here) and it is very quiet, despite being so close to NYC. Tomorrow I will take a day trip to New York to see a friend. I am looking forward to riding a train for the first time in maybe 15 years and catching up with my friend.

On another random note... I still don't like the blog layout, which is why I have hesitated to advertise. Web design is not my forte, but my other efforts have turned out better than this... so I am hopeful.

I am reading Housekeeping by Marilyn Robinson. I am hoping to get to Gilead over the summer too. These are books that have been very popular around the Duke seminary culture and I am curious to see what it is all about (probably not the hokey pokey). The book is slow, but someone told me that is sort of the point- it makes you slow down and check out the details.

For the summer, I am checking out the details of life. I have stopped to smell the roses, although last week it felt like I was hit by a train. I am soaking up the feeling of laying in the grass and of sitting silently as the world moves. I am walking: up hills and on trails. And I am thinking alot, about life and how we never really know what is next.

Monday, June 1, 2009

Endings are Beginnings

I decided to begin a blog about my upcoming heart valve repair surgery. I hope to include both feelings and thoughts about the process as well as helpful information for any young person beginning this journey. I have found very few resources for the 20's crowd undergoing heart surgery. So... I am going to start the movement.

I plan to post "my story," to catch everyone up on how I came to be in need of a heart valve repair.

Today, I really wanted to say that a lot has ended in my life over the past few weeks. My grandmother passed away, I graduated from graduate school, I said goodbye to a lot of friends that I may never see again, and I ended my CPE residency. Finding out about having a heart surgery was not the way I intended to begin my real adult life. I hoped to have a job, be supporting myself, and be in a position to be completely independent. I did not intend to have my mother stay with me so she could drive for me and help me out of bed. I did not intend to stop dead in my tracks to complete this task, while the rest of the world moves on with plans, jobs, and exciting trips. In all of these endings, I know there is a new beginning. I hope that the renewal of my heart will be the beginning of at least a few years of peace in my heart.

June 1st. A new beginning. I'm almost 26, you know. Another new beginning.

Something to ponder:
How have you experienced beginnings in your life?
Consider endings that have paved the way for new beginnings.