Monday, August 11, 2008

A little . . . okay, a LOT . . . of my tale

I've been feeling compelled to write out my story lately . . . not because I think anyone wants to read it, but more because I will benefit from remembering and writing it. This will be a 2-part story describing two distinct ways the Lord has been working in my heart this year. I'm having trouble deciding whether to tell the "contentment no matter where He takes me" tale or the "thankful He saved my life" tale first. Hmm . . . I guess being alive is always a good place to start. (By the way, this is a loooooong story, so if you already know my medical saga, skip the first 13 or 14 paragraphs (yes, it's THAT long).)

For those who may not know my story, I have had a chronic kidney condition all my life. It's most likely benign, but I have seen a nephrologist for the past 15 years to monitor it, and in the interest of being on the safe side, my first nephrologist 15 years ago decided it would be prudent to biopsy one of my kidneys. This took place in 1994 when I was 19 years old. Unfortunately the biopsy was inconclusive - it revealed abnormalities but was not conclusive as to what the underlying defect was.

So, fast-forward about 10 years. I was 29 and barely pregnant with our third child (so barely that I wasn't even aware of her yet) when I developed high blood pressure for the first time. The drs pretty much treated it as pregnancy-induced hypertension even though they thought it highly unlikely that it would have developed so early in the pregnancy if that's really what it was. I began taking medicine to control my bp, and in the end Lauren was induced 3 weeks early because the medication was beginning to lose its efficacy.

Now comes the first time in this tale when I began to truly fear for my life. When Lauren was 3 days old, I developed the worst headache known to mankind. I had never experienced anything like it. It began on a Monday afternoon, and by the next morning I was in tears. We had to take Lauren to the pediatrician to get her billiruben checked that morning (yes, ALL of my kids decided to be jaundiced), and several nurses asked if I was okay. I struggled through that visit, which ended around 9:30 am. I had made an appt to see my midwife at noon but dropped the kids off at my mom's and headed on over there hoping she could see me sooner. I waited for about an hour in tears when finally I went to ask the nurse how much longer it would be. Taking one look at my face, she said, "Just one more minute." Within a minute I was having my bp taken, and at this point it had risen only to about 170/90. (It would continue to rise until it finally peaked at 210/115.) At that point, my midwife and the consulting OB sent me straight to the hospital with my "Do not pass go. Do not collect $200" card. I spent 4 days in the hospital with post-partum pre-eclampsia (which I did not know could occur), 2 of those days in critical care as they worked to get my bp under control. I finally got relief from the headache on about the middle of the second day.

I was sent home on day 4 (finally being able to see my 9 day old baby I hadn't seen since she was 5 days old) but my bp continued to be a roller coaster. Finally after a few weeks, the OB said this was clearly not pregnancy-related anymore and I needed to see my pcp because he would know of a wider range of bp medications to try. Of course, about this time our insurance changed, and our pcp was no longer covered, so I had to go see a new dr. He was listening to my heart and said, "Do you know you have a heart murmur?" Um, no. He said, "It's actually quite loud. Are you sure no one's ever mentioned it." Of course, I'm very sure, so he does a chest x-ray. Here comes my next "Do not pass go" card. My heart was enlarged, so he sent me straight to the cardiologist at 5:30 that afternoon.

The cardiologist was concerned that I may have had cardiomyopathy; I did not. He said that my heart was definitely enlarged and a couple of my valves (mitral and aortic) didn't close all the way, but it was probably the result of how high my bp had gotten during my pre-eclampsia episode. He wanted to keep an eye on things and thought it would probably resolve itself in time. It did not.

All this time, I'd been seeing my nephrologist to keep an eye on my kidneys. Sometime in mid-2006 he decided to do a kidney ultrasound since I had not had one in many years. That ultrasound revealed some enlarged blood vessels in my left kidney. He thought it was probably just some scarring from the biopsy I had had years before, but he ordered an MRI to get a closer look. So, I had an MRI in the fall of 2006, which confirmed enlarged blood vessels in that kidney. My dr decided not to do anything at that point (a decision he would later question) but to keep an eye on things. So, in December of 2007 he ordered another MRI. (Meanwhile, my bp had continued to require more and more medication in order to keep it down.) This time the MRI report was that the vessels of my left kidney were even larger than they had been the year before. This concerned him, but he still said it could be anything from a minor aneurysm to scar tissue to . . .

So, in Jan. 2008 I had an arteriogram of my kidney. (That's not a fun procedure, but it is pretty cool. The radiologist pretty much steers a catheter through your arteries much like a kid playing a video game, with the controls entirely on the outside of your body as he watches the inside on a monitor. I'm amazed at how they can make it twist and turn through exactly the vessels they want to get it to your heart, brain, kidney, etc.) As soon as the radiologist injected the dye, he said, "Oh wow, you have a massive AVM." (a term I would later learn means arterior-venous malformation) He had told me prior to the procedure that he would inform me right away of what he saw but that he would NOT make any guesses about what my dr may want to do about it. He stressed this point quite emphatically before he began the procedure, so I was a bit taken aback when his next words (after, "Call and see if Dr. W is in the hospital at the moment - he's going to want to see this right away.") were, "You're definitely going to need surgery to fix this. Yeah, they're gonna have to fix this." So much for not taking any guesses!

So, at this point (while I'm lying flat and still in the hospital bed for four hours, as is required after an artiogram), the radiologist told me to call my nephrologist and ask if he really wants to see me or if I should just go ahead and let them make an appt with the cardio-vascular surgeon. I didn't have to call. The next morning my phone rang, and it was Dr. W's office saying, "We're making an appt with the cardio-vascular surgeon." Still, I didn't have any idea what to expect. As anyone on the planet would do, I began to research AVM's on the internet. It seemed that the most common treatment was an arteriographic procedure where they insert some type of stent through your leg to repair the problem. Of course, I also read that sometimes they have to take out your kidney, but I had absolutely no idea which of the things I was reading applied to me. So, I did what any normal person would do . . . didn't worry about it and went on our church's women's retreat.

We were gone from Fri evening until Sunday around noon. It was a great retreat and a time of sharing and connecting with friends that I will treasure forever. I pulled into my parents' driveway around 1:00 Sunday afternoon (David had, of course, gone to my parents' house with the kids) and found David standing in the driveway waiting for me with a piece of paper in his hand. He barely said hello before saying that Dr. W had called and left his home number for me to call him when I got back to town. Ding-ding-ding!! Alarm bells going off in my head . . . he called on a Sunday??? And he left his home number??? Those are never good signs.

So, I called him right away, and he said that he had been in his office looking over my pictures (from the arteriogram) and realized that a whole lot of doctors were talking about Rebecca R, but he wasn't sure if anyone had actually talked to Rebecca R. Umm, no, actually. He said he just wanted to prepare me for the fact that I as going to be having a "huge operation" and that there was a very good chance I would lose my left kidney. Huh?? At this point, I still wasn't even 100% sure what an AVM was, much less how it was threatening my life. He said that he had moved my appt with Dr. B (the surgeon) up to the next afternoon and wanted this taken care of asap.

So, the next afternoon I went to Dr. B's (aka, my life-saver and miracle-performer) office and finally began to understand exactly what was going on with me. I finally saw the previous two years of my life beginning to make sense. Have you ever watched one of those artists on tv who starts a painting with seemingly random strokes on a huge canvass? I saw one once where the artist spun this huge square canvass around as he made stroke after seemeingly meaningless stroke, until all at once - as it was practically finished - I saw the face of Albert Einstein. It wasn't until almost the final stroke of the brush and spin of the canvass that I saw any face at all, and once I did, it was unmistakeable, and I didn't know how it had taken me so long to see it. That's what it was like when Dr. B explained my AVM. So, here it is:

When I had that kidney biopsy back in '94, the biopsy needle had nicked a hole in an artery and a vein. Blood had begun to leak, so instead of going from the artery to the vein via a capillary bed as it's supposed to, the blood was shunting straight from the artery into the vein. Well, as you proably know, the blood in an artery is high pressure, in a vein low pressure. So, over time, as this blood was forced into the vein at high pressure, it began to pool there and create what's called a fistula - a bulging area of blood vessel where blood accumulates. Well, after almost 14 years, that fistula had grown so much that there was more than twice as much blood in it as there was in the entire rest of my body. The result: my heart was having to work waaaaay overtime to supply enough blood to my body, resulting in an enlarged heart, high blood pressure, and chronic exhaustion (which I had chalked up to having 3 kids aged 3 and under!).

So, Dr. B's plan of action, he said, was to go in through my abdomen (because the kidney's vascular system lies in the front), find the exact spot of the leak, and fix it. Sounds pretty simple, right? Well, he said that the fistula contained so much blood that when reading the arteriogram pictures, it was impossible to tell exactly where the hole was. It would fill with blood with every beat of my heart, and by the time in emptied during the off-beat, it was already full again . . . so, he basically said he would have to go in fairly blind, use an ultrasound once he got inside of me, and try to find the leak that way and hopefully be able to save my kidney . . . and my life.

Now's probably a good time to mention my grandmother. My dad's mom (who died in her 60's while I was in college) had high blood pressure and kidney problems most of her adult life. She had the first of several heart attacks in her 30's and eventually died of a massive heart attack on the operating table for an unrelated, relatively minor, sugery. (Thyroid, I think.) So, all this time, I've pretty much figured that my health issues are just genetic, and whatever happened to her would probably happen to me, too.

Now, if you know me at all, you know I'm not an easily freaked-out person. As my pastor, Bill, would say, my boat doesn't tip real easily. Even right up until this point, I've been my usual even-keeled self - not panicked, not worried, not anxious . . . but, then . . .

I went for my pre-op on what was supposed to be the day before my surgery (it ended up being postponed a week because I had the freakin' flu), and at LEAST 4 different medical professionals (drs and nurses) came into the pre-op area and said, "Oh, you're the woman with that AVM?" or "I saw the pictures of that AVM . . . amazing . . . mind if I listen?" (You could hear it with a stethoscope on my side, and they were all in awe of that . . . imagine how much more amazed they were when I showed them that you could actually feel it just by touching my side . . . I'd been feeling it for a long time and just thought it was a very-strong pulse.) Or, my favorite, from my anasthesiologist (who is also a good friend), "Wow! Do you exercise at all? You do? That is unbelievable. I can't believe you're alive."

So, now that I was turning into a medical freak-show - which is great if you want fast and friendly service from a medical office staff, but not so great if you want someone to allay your fears about your condition - I was starting to get a little concerned. In fact, by the time I was on my way home I was coming unglued. Fear and panic were apparently trying to make up for lost time, and I became almost fully convinced that I was going to die on the operating table exactly like my grandmother had. Yep, that was it. Everything else was so uncannily similar to her that this made pefect sense, and I morphed into panic personified, crying and hyperventilating like there was, pun intended, no tomorrow.

Here's where my favorite phrase comes in, "But, God . . ." How many times is that found in the Bible? I don't know, but it's in there a lot. Things are looking mighty hopeless . . . but, God . . . those must be two of the most beautiful words in the English language. As I was driving home from the hospital I was listening to a song that I had not heard in, literally, years. Thanks to my recent aquisition of an ipod, I had been traveling down memory lane and dowloading songs I hadn't heard in ages. One of these was by an old Christian folk singer named Don Francisco. Most anyone under 35 or 40 has probably never heard of him, but the majority of his songs were simply Bible stories told in a beautifully poetic way and set to folk music.

The song I was listening to (unintentionally; it was on shuffle) during my drive home that day was called "Voyage to Gennesaret" and was the story of Jesus walking on the water as the disciples' boat was caught in a storm. Here are a few of the lyrics (the rest are in the link):

A man was walking on the water, and we trembled, cried and prayed
Till He stopped and turned and spoke to us, "It is I, don't be afraid.


At that moment, I had the clearest sense of God's presence and voice as I have ever had in my life. I saw Jesus - the unseen presence through every twist and turn of my life's journey - looking at me with love and saying, "It is I. Don't be afraid. Everything you're going through, have gone through, and will go through. Every road your life takes you on. Every storm you weather. Every joy, every sorrow, every pain, every unknown. It is always I. Never be afraid." I'm sure many of us have experienced what the Bible refers to as "peace that passes understanding," and this was truly one of those times. Only God could take me from abject fear to peaceful calm in a heartbeat.

And more aware of my heartbeats, I had never been. After two years of trying not to worry, every palpitation (and they were many) felt like it could be the end of me. The feeling of peace God gave me that day would not last; it would come and go. But, the vision and the message remained. I would lie in bed at night with my hand on my side feeling the blood pouring through the AVM and imagine that it was suddenly harder, faster, stronger, fainter . . . I conjured up images of my heart stopping or my insides hemmoraging that would make a CSI writer proud. But, always, I remembered God's voice: It is I. Don't be afraid.

So, thank you, Don Francisco. Thank you, Dr. B. Oh, how did things turn out? The surgery was not fun, but it was successful. After making a 10 1/2 inch incision and retracting my ribs out of the way, Dr. B located the leak with an ultrasound and was able to bypass and patch it without having to remove my kidney. I'm told that when they opened me up, my heart was pumping almost fourteen liters of blood per minute, and by the time they closed me, it was pumping six. (Five is normal.) Recovery was not easy . . . 5 days in ICU, 2 days in a regular room, 4 weeks without my kids, 6 weeks sleeping (or, more accurately, not sleeping) on the couch, and going on 6 months now with ribs that protrude in places they previously didn't and lingering pain when I do certain things like close the door on the back of the van or lift a heavy casserole dish out of the oven. But, you know what? I'm alive. God is still there, the unseen presence comforting and holding me steady through every storm He allows to come my way. And, like Peter, I sometimes keep my eyes on Him and experience a peace that is as miraculous as walking on water, but I often take them off and panic anew. For those times, here are a few more of the lyrics from the song, which is really from the Word of God:

I climbed across the gunwhale looking straight into His eyes
But long before I reached His side, the wind began to rise
I forgot Him in an instant and I sank just like a stone.
I cried out, "Jesus save me!" and His hand was on my own.

4 comments:

Kristen said...

WOW! I have followed some of your medical journey through the board but seeing it all at once, wow! SO glad it was fixed and you are feeling better.

Jawan said...

Becky, Gosh....I am so glad you shared this in writing. I've often asked you "how are you doing" but I never knew the depth of physical issues you went through. I'm glad you're alive, too!

Katherine Maxey said...

what an amazing story! I really enjoyed it in a weird sort of way...but mostly I'm glad you're ok and God sent the right people to you at the right time.

JMom said...

Wow! I came over after reading your comment over at my place. What an amazing testimony!! Thank you for sharing.