Dancing Without Oxygen

I was recently reminded of this picture when my daughter shared her memory of "The Night My Mom Gave Me a Fat Lip While Swing Dancing." It happened in 1999. We were learning, and I must have missed something, because somehow my elbow connected with her lip, and all of a sudden, the party was over. Even though I begged her not to cry, one look at her poor battered mouth and I knew I wasn't going to be swinging her around the dance floor anymore that night. All I could do was go home and preserve the memory by making it into a cartoon. But I digress. This is really about my goals for after my lung transplant...which may or may not include further swing dancing lessons...


I want to dance without oxygen,

To breathe without thinking.


I want to fill my lungs with the air around me

And hold it in as long as I can.


I want to run, carrying only my own weight,

To synch my breaths with my footfalls on the pavement.


I want to say my words as loudly or as softly as I choose,

Without coughing and choking on them.


I want to walk through my house, unencumbered by breathing tubes,

And not get tangled up in the furniture.


I want to climb all the stairs without stopping to rest,

And to walk past beds and chairs without feeling an urge to recline.


I want to clean my house--all of it--and consider it a day's work,

Rather than a lick and a promise that I know will never be fulfilled.


I want to say "Yes, let's go!"

And not think about how much oxygen I will need.


I want to open the door and step outside,

And not be yanked back by a tube in my nose.


One goal, one wish, one expectation.

If I can have this, it will be worth everything else that comes with it.


I am ready for my new life,

Whatever it may be.

Dear Diary...

Dear Diary,

Today made me want to chuck my positive attitude and give up on imagining the outcome I desire. Today made me want to conjure up the worst that could possibly happen and just wallow in self-pity. Today was a day of discouraging words. Today was Duke Clinic day.

Oh, it wasn't all bad. The blood work-up and breathing tests went smoothly enough. It took just two attempts to get a good blood gas from my rolling veins, and I only had to play the dreaded Keep Blowing game three times. The best part was that I didn't have to perform the six-minute walk test. Best because the broken toe that happened on Duke Clinic day last week--the one where a nearly full oxygen canister slammed down on my left foot--still hurts like a son-of-a-bitch.

No, the discouraging words I heard came at the end of the day. They were uttered by Dr. Child Prodigy, who, judging from her apparent age--19-1/2--must be the newest member of the Transplant Team. As soon as she started speaking, I could tell she was smart. The kid knew what she was talking about. I had almost started to relax when I realized she was saying something about a delay in placing me on The List. Something about swallowing difficulties? The swallowing difficulties that I've been dealing with, diligently trying to exercise away, for two years? Those swallowing difficulties? Um, may I ask why this is coming up now? Yes, I realize that the paralyzed vocal cord is a new complication, but surely someone could have mentioned that those issues might be waving a red flag before now. Like maybe before I was subjected to all of those expensive--albeit really fun--medical tests. Before I put myself on the emotional roller coaster of having to decide if I even wanted a transplant. But you waited until now, when I've decided that I most definitely do want one--ASAP, please--before telling me I might have to wait even longer?

Diary, I'm afraid I might have lost it just a little bit then. But I didn't say any bad words, and she was really tough. I was the only one who cried. Then she told me she didn't want me to apologize. And then she apologized because she felt that perhaps she hadn't chosen her words very well. We were then free to move onto the next disheartening bit of information she had to share with me--antibodies.

Antibodies are something that I have also known about for a while. I have a lot of them...blah, blah, blah...make it harder to find a match...blah, blah, blah. And today I learned that the ones I have are mostly not the good kind...blah, blah, blah...bad performers...blah, blah, blah.

I guess what I'm trying to say, Diary, is that today kind of sucked. But you know what? Now that we've talked, I feel a little better. I have one more clinic day this week. I'm going to try to get back to my guided imagery happy place before then. Today was just a little bump in the road. I probably let things swell out proportion--like my damned foot. You know what--never mind. This is all going to work out. I can hear Missy now..."Don't worry, silly. It's going to be all right."

Thanks, Diary. I needed that.

Lungs: An Update

This beautiful picture was my daughter's way of gifting me with new lungs for Christmas.

Even though there are still some details to be worked out, some tests to be taken, things to do, people to see...in other words, even though nothing is yet written in ink, this feels like a good day for me to write about what's going on with the lungs I have, and the hope that I have of replacing one of them, soon.

Since my week-long evaluation at Duke in January, where I was deemed a "reasonable candidate" for a single lung transplant, I have been moving steadily towards being officially placed on the list. At first it was difficult to accept that reality. Part of me had been hoping that there would be some reason I couldn't be accepted, releasing me from the responsibility of making what felt like an impossible decision. I had read enough--including patients' success stories--to be convinced that life after transplant was not necessarily a life I wanted. It certainly wouldn't be the life I have now, the one that I love so much.

When I heard the news that I was in the running, I felt no sense of elation. The only peace I got was when I imagined myself saying "No thank you. I have decided to stick with the lungs I have." I thought that was a sign that I should just accept whatever time I have left, and make the best of it. I wouldn't change much. I'd try to be nicer, get the taxes done, clean the house. Other than that, I'm pretty happy with the way things are.

Now I see that I was wrong. I've learned a lot in the last couple of months. I have been going to Duke five days a week for Pulmonary Rehab. That's exercise. I have always loved exercising, even though I have slacked off drastically over the last several years. Exercise has always made me feel strong--that I have some control over my life. At rehab, I now accomplish in a day what I had been doing in a week. I am starting to feel invincible again--almost.

The program at Duke includes education about all things transplant-related. No matter how horrifying something may seem (i.e., feeding tubes, diabetes and tremors), if you hear it explained clearly and calmly as if it's just another one of those things people have to deal with, it starts to feel normal. Knowing that everyone in the room with you has the same fears and is facing the same difficulties helps you to know that you can do this. Knowing that your are in the hands of the very best is priceless.

I remember reading somewhere that it's not the chances we take that we regret, but rather, the ones we don't take. I realize that if I don't take this chance, I won't be here to regret anything. Guided imagery has helped me to realize how important a part the mind plays in what happens to the body. And remembering that everything is in God's hands, that he will direct the outcome, gives me great comfort.

As I write this, I feel good, at peace. I feel like I have prepared for this journey. I realize it is not a journey that I could ever make by myself, but I am blessed with so much love and support in my life, I know I will never run out. I have already received more acts of kindness than I can properly express thanks for.

I just wanted to give you an idea of where I am. I am ready for whatever is coming my way.

Guided Imagery: Where I Try to Explain Something I Know Nothing About

I had heard of guided imagery, or read about it in a magazine. I probably thought That sounds interesting. I'll have to look into that. Then I must have pinned it on my mind's Pinterest board, along with the many other things I'm going to do once I've knitted all my yarn and sewed all my fabric and read all my books.

Then a friend reached out to let me know that she has had years of experience and success with the technique. She thought it might be helpful to me.

Two things you should know, in case you don't already: (1) I thrive on anxiety and turmoil. I have an endless hunger, which causes me to seek out the Worry in every situation; and (2) I am in now the process of being evaluated, prior to--I think I hope--being placed on the United Network for Organ Sharing (UNOS) list for a lung transplant. A fact guaranteed to keep my Worry tank full to overflowing for the rest of my life. I need help.

Yesterday, over the phone, my friend explained how Guided Imagery works. She told me about it in a way that made me eager to try. Two things stuck with me from our conversation--I would have a special "Guide," and I would learn to visualize outcomes that are desirable to me. I was in my room as we were speaking, and I looked up at the painting of The Sacred Heart of Jesus on the wall. Such a beautiful, kind face. I knew Jesus would be my guide.

But this morning, I learned that it wasn't up to me to consciously choose a guide. One would make itself known to me. We began with Martha softly talking me into a very relaxed state--perhaps the most relaxed I have ever felt in my life, at least while I'm awake. Then she told me to picture myself in a place where I feel safe and comfortable...happy. I tried to conjure a little cottage in an English garden, when suddenly I saw the swing in my sister Melissa's flower garden. How many times since she's been gone have I pictured myself sitting there with her on a sunny summer morning, drinking coffee, talking and laughing like we used to during our trips to Michigan? That was definitely my place. Can you guess what came next?

Martha then had me imagine my Guide arriving. I cried when I saw her, and I'm crying now, as I'm telling you this...Melissa came walking across the lawn and sat down beside me on the swing. I then attempted, with guidance, to imagine how she acted when she saw me. She had a smug little smile, because she knew she was surprising me. I heard her voice--her calm, beautiful, voice--saying "Don't worry, silly. Everything is going to be all right." She had many occasions to tell me that when we talked. Of course, Missy is my guide for this journey. That I hadn't thought of it myself surprises me. That she chose to come to me delights me. I feel better now about taking this trip with my sister.

The View from Missy's Swing

New...

This was shared on facebook by my friend, Cindy. I know nothing about numerology, but it makes perfect sense to me that 2016 should be a number (9) which signifies endings and completions. For me, it feels like 2016 ended of a way of life I had become very comfortable with.

Over the last eight years, I've gotten used to supplemental oxygen and regular pulmonary function tests. Gradually, my lung function has dropped from 100 percent to 75 to 68. When it dropped to 40 percent within six months, that was significant. That's when I got used to being tethered to a concentrator or a portable oxygen cylinder around the clock. Happily, that number stayed at 40 percent for three good years. After each visit to Duke Medical Center for testing, I was happy to report that I was still "too healthy for a transplant." I'd had to exchange things like tennis and running for other things--knitting, reading, writing--but life was still good, still full of plenty of happy distractions.

In November, however, I learned that I am no longer too healthy. Things were said about it being time to get me on "The List," because the disease has started to progress. Funny--I'd almost been able to forget that I had a disease. I'd come to view my oxygen deficit as a lifestyle change. Now I have to change my thinking.

I will go to Duke at the end of this month for a week of daily testing. Awesome Greg and I will make the 50-mile trip each day, and each day I'll undergo some kind of "procedure." I heard words like CT scan, heart catheterization and barium (the kind you drink). I must admit, I'm feeling a little bit of fear and trepidation as that week draws near.

But this numerology thing eases my anxiety a little. If 2016 was a 9, then 2017 is a 1, which means new beginnings. I must not resist, I'm warned, if I do not want to be pushed by the universe. I definitely do not want to feel pushed. Which brings me to my single New Year's resolution for 2017:

I resolve to become a person whose response to the future, whatever it may be, is "That sounds great--let's do this!" Maybe 2017 will make me the recipient some new lungs. Whatever happens, I trust that all be well. My resolution for 2017 is to choose trust over resistance. We'll start there.

Can We Talk?

Can we talk?

Not really. Well, you can talk. I'll just sit quietly and listen...

Like hell I will! That would be like me sitting and watching you dance, when I can't anymore. Not gonna happen.

Because, even though I really can't talk anymore, I can't stop trying. I'm not sure what's going on with my vocal cords, but it's apparently connected to my lungs. At least that's what they told me last year, when I began having occasional choking incidents. I was sent for speech therapy and given some exercises, blah-blah-blah. I've already blogged about that.

So now my voice is in the going-going stage of being gone. A mere rasp in the morning becomes barely a squeak by the time Awesome Greg gets home from work. Unless I'm right in front of him, using hand gestures and exaggerated lip action, he can't hear me. He can tell I'm saying something, but it doesn't sound like words. At first, if he's had a good day, he might say something like "What's that? I couldn't hear you." But after three or four attempts at being nice, he just snarls "Wha-a-a-t?!!" in an annoyed--and annoying--manner. I understand, but sometimes it makes me want to yell back at him--which is no longer effective.

My friends have been kinder, but they don't have to spend as much time with me.

I did bring the matter to the attention of the transplant doctor a couple weeks ago. He said it could be acid reflux, and prescribed Prilosec. His dismissal made me feel like my voice was outside his realm of interest. I'm almost done with my prescription, but nothing's changed. I had no other symptoms of acid reflux anyway. I'll be going back to Duke in a month for a complete evaluation of everything before I'm actually placed on the transplant list. I know I'm going to have to drink barium. I hope there's a good reason for that.

Meanwhile, if you need me, text, don't call.

Listing

(Photo by Dave Carson)

List, noun (1)--a record of a number of items; an enumeration.

Example: A national listing of patients in need of organ transplants, i.e., lungs. Ideally, there would be a coordinating list of organs available for transplant, and it would be a simple matter of matching Column A with Column B. Unfortunately, available organs don't remain listed for very long. Patients needing them sometimes do.

List, noun (2)--a leaning to one side, as of a ship.

Since I found out a three years ago that I was a potential candidate for lung transplant, my list has varied widely. First, there was a tip towards fear, then relief when tests revealed that I was "too early" to actually be listed. Sure, I had slowed down a little, but I could happily continue with things the way they were for a very long time, I thought. There was a gradual lean then towards acceptance, where I was able to hold steady until last week, when tests showed that my oxygen saturation has dropped. The disease is progressing.

List, verb intransitive--tilt, careen.

Then the phone call yesterday. They want to schedule a week-long evaluation, preparing me to be placed on the "List." I careened towards denial. I pounded on the door and rattled the knob, but no one would let me in.

Now I'm trying to reach trust. I will probably continue to list along the way, but I'm taking a breath and heading towards the horizon. Full speed ahead...

Inside My MRI

Okay, this looks like more like an optical illusion than what I saw from inside my MRI yesterday, so...well, just use your imagination, okay?

I wasn't dreading it, but I didn't expect to actually enjoy it. Of course I wasn't crazy about the two IV's I had to get stuck with first, and I got a little nervous when they told me about the drug that could make my heart race and cause shortness of breath--you know--like a workout with no work. And dye? Surely that couldn't be good. But it was a package deal. I didn't get to pick and choose.

I did, however, get to choose what music I wanted to hear during the procedure. I picked "classical."

I knew what the tube would look like, and that some people panicked when they were inside, but I wasn't anticipating any trouble with that. As soon as I saw the clean white sheets and stacked pillows, I knew I was going to be okay. Oh, yeah. One arranged under my knees, just so. One bunched up a little more under my neck...Yes, very nice. You mean all I have to do is lie perfectly still, with my arms by my sides and listen to beautiful music piped in through these fine headphones? Can do!

I had to take a few practice breaths, then try holding my breath on command, just to see if I could. No problem. Just as I was beginning to wish the whole thing could last longer than an hour, the cameras started whirring. Yes, they whirred. And sounded like air raid sirens. So much for falling asleep. I just let my mind wander.

I looked down at my feet, and the door and window that I could see beyond them. I bet I can draw the view from in here! I told myself. Then I started thinking that even with those noisy cameras, there were worse places I could choose to be. But why would I? Then, suddenly...

Missy! I felt my sister, Melissa, all around me. I sensed her voice inside of me--her calm, beautiful voice--saying "Don't worry, Silly. It's going to be all right." Even though she was my baby sister, she often told me that, and I always believed her. I felt tears coming, but they were happy tears because she was there. I stopped myself, though, because I didn't want to start coughing and blow the test. I knew she was proud of me for doing that. She never was one for crying.

The MRI ended and my day continued with tests and tests and more tests. And at the end of the day, the news I got was less than what I had hoped for. But I'm going to try to remember what Missy said. Because whatever happens, whatever is coming, it's going to be all right. It always is. Thanks, Missy. I love knowing you're still there.

Duke Day

Today was Duke Day--the day My Awesome Husband Greg and I spent at Duke Medical Center so I could have my pulmonary function tested, and some other fun stuff.

We checked in at 7:30 for an 8:30 cardiac MRI. Quite a procedure, especially the getting-ready part. How fortunate that we hadn't needed all the time we'd allowed for potential pre-holiday traffic tie-ups.

From things I'd heard, I was apprehensive about the MRI, but it turned out to be quite enjoyable. And I now know for certain that I am not claustrophobic. I was a little concerned when I heard the part about holding my breath, imagining those obnoxious pulmonary tests where they make you exhale until you have no air, and then yell "Hold your breath!" But instead, I was instructed by a soft voice in my ears, accompanied by classical music, to inhale, exhale and then stop breathing--but only for a few manageable seconds. The obnoxious kind would come later, but this was a fine way to a begin a long day of being stuck and prodded.

Then there was blood work, a chest x-ray and the dreaded breathing tests. The finale was a consultation with Dr. Ali from the Transplant Team, where I received the day's results.

I really don't know the best way to tell you this, so I put it on a shirt...

At first glance, the MRI showed my heart function is normal. The chest x-ray indicated no new scar tissue. As the good doctor pointed out, there is so much scar tissue in both lungs, there simply isn't room for any more, so I no longer have to worry about that. My lung function is still holding at 39 percent. That's also good news. But here's the glitch: My oxygen saturation has dropped a little. Dr. Ali seems to feel like it's time to discuss actually putting me on the transplant list. Not that anything is likely to change within the next few months, but we should start thinking about. I guess he means in some new way, since I've been thinking about it for quite a while now.

I'm not panicking. I to back to see the Pulmonary Team in January. Meanwhile, I feel good, can do almost everything I want, and get out of doing a lot of stuff I don't.

And tomorrow is Thanksgiving! I wish you all a full and joyous Holiday with your families and loved ones! I love you all!

Seasonal Anxiety

I confess that I'm starting this month with a vague feeling of unease which, perhaps surprisingly, has nothing to do with the election just a week away.

I will be going to Duke Medical Center to have my pulmonary function tested once again on the 23rd. Those visits always set my stress level on high--the drive, will we get there on time, will we have to wait so long in one place that Awesome Greg will become irritated and have to be restrained? (It could happen.) And of course, the procedures themselves. Except for the inevitable flu shot, nothing should hurt; it's all just so uncomfortable. I think breathing is best done under your own direction, without someone forcing you to plug your nose with a plastic clip, keep your lips sealed around a plastic tube, and shouting at you to "Breathe in...hold it...hold it...hold it..." and, just as your lungs start to explode a little bit, "Blow it out...keep blowing....keep blowing...keep blowing...!"

But this year, adding to the normal anxiety I always feel in the weeks before these medical tete-a-tetes is the fact that all of this testing will be done the day before Thanksgiving. Something about accommodating my desire to see both teams--Pulmonary and Transplant--on the same day.

I feel like after four years, they should know me pretty well, but I guess they haven't witnessed me in action the day before a big event. Nothing is ever done ahead of time. I save it all for the eleventh hour. And now my eleventh hour is going to be spent traipsing from waiting room to waiting room 50 miles away from home! Oh, and not to mention the traffic everywhere the day before a major holiday!

Well, holidays always bring stress. But they also bring fun and gratitude and a deep sense of satisfaction at the end of the day. No matter how our Thanksgiving turns out--even if it's just takeout from whatever place we can find open--it will be the day after my pulmonary function tests. Here's hoping that, once again, I will be feeling thankful for a still too healthy for transplant proclamation. Fingers crossed!

A Long Day With No Red Flags

My Awesome Husband Greg and I left early this morning for the hour-plus drive to Duke University Medical Center for breathing tests and doctors' appointments. That made it feel a little bit like a vacation. It also felt like a vacation because I did not sleep well last night. I never sleep before road trips and doctors' appointments. But I had no reason to worry. Unlike our real vacation last summer, when we left an hour later than planned and then had to return to the house for a forgotten bag, we actually left a few minutes early, and arrived with almost a half-hour to spare.

After check-in and a brief wait, I had to report for my pulmonary function tests. These tests aren't painful, but they are uncomfortable. I never had to do them when I had full lung capacity, so I have no basis for comparison; with 40 percent lung function, taking a deep breath, holding it, and then blowing it out forcefully is nearly impossible. It makes you feel like part of a lung is coming out with your last ounce of breath.

Normally, the technicians who perform the tests are kind, encouraging types who smile warmly and talk a lot. They say things like "You are doing a fantastic job!" as I sit there gasping for breath between tests. Apparently, all those girls had Cyber Monday off. Today I had Dianna--whom I liked immensely better. She was straightforward in delivering her instructions. I knew I needed to listen the first time. She said things like, "Is that really all the air you can take in?" and "You're breathing from your neck. Use your lungs!" Like I said, I liked her, but I was not encouraged. She sent me on to my next appointment with a deep-seated sense of worry which lasted until I saw the pulmonologist later in the afternoon.

I love both of the doctors I saw today--the pulmonologist and the transplant doctor. If they weren't doctors with crazy busy schedules, I would like to hang out with them. They read all the reports on my breathing tests and lab work, and both agreed that even though a couple of numbers had dropped just a little bit, they saw no red flags. I get to remain on the "inactive" pre-transplant list. It was all I could have hoped for.

Plus, well, you know how I like to worry? Well, the transplant doc gave me a brand new reason to worry. She thought we'd already discussed this, but No. I would have remembered: Apparently, two visits ago, I showed that I had antibodies against 70 percent of the population. Meaning that of all the lungs that might be available for transplant at the time I need one, 70 percent of them would likely cause serious rejection problems and not be worth transplanting. Yikes! Pretty narrow field, right? Well, for some reason, the tests they did at my last visit show that I now only have antibodies against 49 percent of the population. Better, right? But still lots of reason to worry...

The way I see it, it's a win-win situation. I get to keep my "Still Too Healthy" shirt, and I have something new to fret about. Life is still good!

Swallowing Hard

Some things are hard to swallow. Your pride. Defeat. Golf balls. The list goes on.

I have begun having difficulty swallowing liquids--even the ones I love, like Cabernet and Merlot.

It's been almost a year since I began frequently (i.e., more often than never) having episodes of choking while I was eating. Some of them were pretty scary, like the time I had to have Jordyn pound my back because I couldn't breathe around the cracker crumbs that had carelessly slid down the wrong way. Others, I was able to manage on my own by forcing a cough until whatever was caught got dislodged. The one that made me think it might be worth mentioning to a doctor happened the day before Easter...

Awesome Greg was outside, and my son was upstairs. I was sitting at the table eating peanuts, and one got in the wrong place. I couldn't cough, because I couldn't get a breath. I couldn't call for help, because I couldn't get a breath. I could scarcely gasp, because I couldn't get a breath. I was able to get Greg's attention by stumbling outside, pounding my chest. Sensing my dilemma at once, he started hitting me on the back so hard that Dominic must have heard it up in his room, because suddenly he was there, too, saying "Should I call 911?!!"

Greg attempted a Heimlich maneuver, forgetting that he had forgotten how. With his arms wrapped around my upper rib cage, he jerked me up and down with adrenaline-fueled force, lifting me off my feet with each yank. Realizing that he was probably doing more harm than good, he gave me one more good whack on the back, and it was over. Nothing as dramatic as an entire peanut popping out of my mouth, finally allowing me to fill my lungs. It was tiny little peanut shards. Unless I still have a peanut lodged somewhere in my lungs, I almost died that day because of tiny little fragments of nuts.

So I mentioned "The Easter Incident" a few weeks later when I saw the Pulmonary Team at Duke. Apparently, people who have problems with their lungs like I do also frequently have swallowing issues. I was sent right up to Speech Therapy for a swallow test. It was most unpleasant. A minuscule camera on a wire was fed through my nose and down my throat, and we were all treated to the "Kate Swallows" show. What it showed was that I need to swallow three or four times before all of my food goes where it's supposed to go. And sometimes it doesn't. Most significant, though--and what I hadn't realized--was that every time I swallow liquid--every time--it goes down the wrong path, where I am in danger of inhaling it. I had noticed I was coughing every time I took a drink, but didn't associate it with choking on my food.

Happily, there is a solution, and it doesn't involve feeding tubes--at least not yet. There's "Swallow Therapy." I had six sessions and learned seven wonderful exercises I can do (and have been doing) every day. Since I haven't gone a day in my life without talking or swallowing, I have no idea how my throat muscles got so lax, but that's what it amounts to. The muscles can be strengthened by doing exercises. Since I have been doing them, I have had no incidences of choking on food. And liquids? All I have to do is remember to duck my head every time I swallow, allowing me to control the path it takes, rather than gravity.

So if it looks like I'm bowing my head in homage each time I take a sip of wine, well, I guess I am.

Shhh...I'm Trying To Worry Here

Sometimes I call myself a Thinker. I like the way that sounds, kind of like I'm deep and pensive, a well of unplumbed wisdom just waiting to be tapped.

But if I'm being honest, I have to admit that when you see me sitting with my chin in my hand and my brow slightly furrowed, I'm not so much thinking as I am worrying.

Yep, I'm a Worrier. I actually enjoy worrying, and I'm quite good at it. I worry about things that have already happened, things that are about to happen and things that might happen. Sometimes I even worry about things that could have happened, but didn't.

I do not worry about things I don't know about. I just ignore those things. But, if you give me just one little piece of information about something (maybe with the intention of keeping me from worrying), I will put it in a little box for safekeeping, and then veer around crazily, gathering up any other parts of the picture that I might be able to worry about.

That's where I am right now with regard to being in the "Pre-Transplant" program at Duke University Medical Center.

In October, I was told that, although I have serious lung disease (i.e., "end-stage" lung disease), I was still far too healthy for a transplant. That was all I needed to know -- then. I was happy not to have to worry about that stuff. But this Wednesday, I go back to Duke for reevaluation. Since I don't know anyone who has actually had a lung transplant, I decided to prepare myself by doing a little reading. (The Lung Transplantation Handbook, Second Edition, by Karen A. Couture, published 2001.)

I've only just begun, and already, I have enough information to worry myself to death before Wednesday!

For instance, the number of people who die while waiting for new lungs is more than half of the number of people who actually, receive them, which is but a fraction of the number of people on the list. By way of encouragement, I suppose, it's pointed out that several strategies for increasing the number of lungs donated have recently emerged, such as "exploring the use" of lungs from patients with less-than-perfect chest x-rays, and accepting lungs from donors over 55 years old, or who have a smoking history. I mean !!!!!! You might as well tell me you got my new lungs from the Dollar Store!

And that's only in the "Before Transplantation" section of the book. I can hardly wait to read about what actually happens during a transplant. Surely some bones will broken. That's gotta hurt. I don't handle pain very well. I barely survived the pain from my simple little ankle break a few years ago!

And it's already been hinted that afterwards, there will be drugs with serious, even life-threatening, side effects that I would have to take for the rest of my life. (I'm not even going to mention that that might not actually be very long, based on the bar graph of survival rates.)

See what I mean? I've struck the worrier's jackpot!

I'll be okay, though. I know it doesn't sound like it right now, but I really am a positive person (albeit one who enjoys worrying, as one might enjoy a relaxing hobby). What I'm not is a good decision-maker, tending, as I do, to just go "Click, that's my decision." But I realize that this one will probably be taken out of my hands. When that happens, I will be able to accept whatever is to be. My glass isn't just half-full, after all -- it's overflowing.

As for worrying about -- and fearing -- the unknown, I am going to try to remember something recently posted on facebook by a dear friend who just underwent a double mastectomy...FEAR -- Face Everything And Rise.

What Do I Know?

Warning: This is going to make me sound like a mouthy know-it-all who has no respect for doctors or medicine. I'm sorry for that, because I'm not, really. At one time in my life -- 26 years ago, when my son was born and whisked away to a neonatal intensive care unit in another hospital -- I trusted doctors and nurses and technicians and machines and medicine as if they were God. I never questioned a thing. I wish I could have that kind of trust again. But having this condition myself has made me feel helpless in a way that I haven't since my baby was so sick. Plus, some things have happened -- you know, those annoying little mistakes we all make at work -- that have made me apprehensive about trusting my life to another human being, no matter how many medical degrees that person may have. Of course I trust God. I'm quite sure he's the one who's telling me to read and ask questions about everything. I intend no disrespect for the medical profession. This is just the way I am now.

Sarcoidosis: Let's break it down. Sarc = flesh, oid = like, and osis = diseased. So, if I understand Wikipedia's definition correctly, sarcoidosis is an ugly-sounding word for an ugly condition involving flesh-like, diseased growths called granulomas. (I think granulomas is a cute word, because it reminds me of granules, which reminds me of sugar.) These fleshy globs of death and decay (I'm paraphrasing now) most often appear in lungs and lymph nodes, but they can show up anywhere. I have them in my lungs, but I don't know how they got there, or how long they've been there.

Wikipedia says they sometimes clear up or go away "spontaneously." My experience has been that any doctor worth his diploma will want to prescribe prednisone, and he'll want to start with a pretty hefty dose, just to see if it works.

Prednisone: A drug -- a steroid -- used to treat a long list of conditions, including breathing problems. It reduces your immune system's response to various diseases. My mom took prednisone back in the 70's, when she was diagnosed with Hodgkins Disease. I remember hearing her rant to someone over the phone about how horrible that drug was -- Oy vey, all that damage to all your organs! (Okay, so Mom didn't actually talk like that, but I think we know where I got my ranting predisposition.) That was enough for me. At that moment, I made a conscious decision that I would live out the rest of my days in mortal fear of prednisone. (Did I mention that prednisone sometimes makes patients -- and their children -- think a little irrationally?)

Of course the list of side effects and precautions listed on the patient prescription information they give you with your pills is far too lengthy to quote here. But I bet if you can think of something that can go wrong, prednisone can make it happen. (So can getting older, but I'm glad I have prednisone to blame.) By far, my favorite sentence is the one that says, "Remember that your doctor has prescribed this medication because he has judged that the benefit to you is greater than the risk of side effects." Really? He gets to make that decision without any input from me?

The other one I love is "Some conditions may become worse when this drug is suddenly stopped." To me, that's the same as saying "You'll never get off this stuff." And yet the doctor is the one who gets to make the decision.

Pulmonary Fibrosis: The formation or development of excess fibrous connective tissue in the lungs, also described as "scarring of the lung." (Wikipedia again.) It can be a secondary effect of other diseases, like, say, sarcoidosis. But it can also appear without any known cause. That makes it idiopathic fibrosis. (Idiopathic is a word I don't like, because it makes it sound like you did something idiotic.) Seriously, though -- you can have scar tissue in your lungs without having a clue as to how it got there. You can't say that about scarring anywhere else on your body.

In my case, the scar tissue looks like it's been there longer than the sarcoidosis. They just can't tell for sure, but they're pretty sure a good shot of prednisone is worth a try. Wikipedia does say that there is no evidence that medications can significantly help this condition, but what the hell -- what's can a little prednisone gonna hurt? (Oh, yeah -- see above.)

I've known about all this stuff for about five years now. As I may have mentioned, I'm on prednisone. I also use oxygen when I sleep, and whenever I'm active. One way I have of knowing how I'm doing is having annual Pulmonary Function Tests. When we first started, my lung function was at 75 percent. In three years it dropped to 68 percent, a year later to 65 percent...That was last year. My most recent test showed that it's dropped to 45 percent. That's significant. I'm going to have to study harder for the next one, I guess.

I've had something of a love-hate relationship with my Dr. Pulmonologist since I first met him five years ago. Mostly I love him, and when I see him, it's always hard for me to remember how outraged I get when I'm unable to talk to him on the phone, or am punched in the face (because that's what it feels like) by office policies regarding who is allowed to inform patients of test results. Recently, overwhelmed by frustration, I unloaded on the innocent nurse at the other end of the phone line, knowing full well that when I was finished, I would fall all over myself apologizing.

The pictures decorating this post are Dr. Pulmonologist in his various incarnations as I've blogged about my issues in the past. I don't know if he's a really good doctor, but he's a really good person. I trust him as much as I can, and pray -- a lot. And thinking about that, this "condition" really could be the answer to a prayer, because if one of my kids had it, I know I'd be praying like crazy for God to take it away from them and give it to me!

My Oxygen Deficit Disorder

I've been experiencing some breathing difficulties; ergo, air-to-go!

I guess this is kind of serious...

But I just can't seem to take it seriously.

(See what I mean?)


I've been wanting to write this post for a couple of weeks now, but have put it off, hoping to have more answers than questions before I attempted to explain it all. Now I have some answers, but even more questions. So I'm just going to go ahead and blog, before I forget that there was a time when I didn't need a special means of carrying my oxygen with me -- a time when it was all for free...

That was a time when I could run; when, even though I didn't always feel like it, if I could just do it -- hey, what a great slogan for a running shoe company -- before long, endorphins would kick in and I'd feel like I was in harmony with the universe. (Gosh, I miss endorphins!)

That was a time when I played tennis, and although I missed more shots than I made, I was exhilarated at being able to run madly around the court and then recover in time to be able to [try to] serve.

That was a time when our social life -- mine and My Awesome Husband Greg's -- pretty much revolved around playing tennis and tennis socials.

Today I went for a walk with a four-pound can of oxygen slung over my shoulder in its little padded carrying case. I was able to breathe easily, even though I was crying a little bit. I've finished crying now, because I realize that this is a small thing, compared to the burdens that so many others are bearing. But I needed to mourn for what I've lost.

I also feel a little bit like crying when I think about how difficult it's been, now that I know I need a portable oxygen system, to actually get one that works for me.

This is where I'm tempted to go into my tirade about how frustrating it's been to:

(1) Find someone who can tell me exactly what I need;

(2) Find out all the options that are available, and and what the differences are -- including cost -- between them;

(3) Have something delivered and set up that (a) comes with some operating instructions and (b) doesn't reek of cigarette smoke. Also, (c) it might be nice to have someone like, say, a respiratory therapist, come and explain how the system works.

And when I say tirade, that's exactly what I'm talking about. Whenever I find myself trying to actually explain how exasperating all of this has been, I realize that I look and sound like I'm doing a Lewis Black monologue.

So I'm going to spare you all of that. Suffice it to say, I still do not feel that I have the correct system for me. I'm expecting a phone call tomorrow that may put me on the right track. I hope so. My confidence in pulmonologists and home medical suppliers has been badly shaken. I feel like I'm the one who's in charge. That's probably as it should be, but it's a new feeling for me, and it puts me way outside of my comfort zone.

I long for the days when I believed that doctors were preordained by God, and that they were just a little bit supra-human; that they had time to read all the pages of the test results they ordered, that they could make definitive diagnoses, and that they knew the all the answers to my questions about the medicines they prescribed.

I long for a lot of things to be the way they used to be. But I realize that change is inevitable, and if we are wise, we roll with the punches and learn to look at things in a new way. I think I'm there, or will be soon...

Some Revelry and a Revelation (Alternate Title: My Left Foot)

I have taken many things for granted in my lifetime. There are a few things about which this is no longer true. These are gifts, and I am reveling in them...

The feel of the floor against my bare feet -- especially the left one;

A hot bubble bath;

Rubbing lotion into the dry, papery skin on my left leg;

Flexing and bending my ankles. (And being able to trace the letters of the alphabet with my left foot, per the doctor's orders, even though I can't read what I "wrote"...I must be right-footed!)


Now for the revelation part:


God, as they say, works in mysterious ways. We are not meant to understand His ways, and I'm sure that I don't need to understand. But yesterday, I think I was given just a glimpse into His workings...

After just two weeks and two days, I have been unburdened of the Big Blue Cast that encased (and encumbered) my left leg. This unburdening came about, I feel, because of a misreading of my file. I had been told that that cast and I would be constant companions for at least four weeks, with the need to check it in three weeks, due to the fact that I have been taking prednisone. (Prednisone affects bones, can cause osteoporosis, and interfere with healing of broken bones.)

But after just one week, I became worried that the burning sensation I was feeling might mean that something was not healing properly. When I called, I was told that my cast might be too loose. I had to admit that it was comfortably roomy, so the Physician's Assistant who'd returned my call told me to come in the following day to have it replaced.

I imagine that he then made a note in my file for that day which said,"Remove cast."

That was last Friday. I went in as directed, and my original cast was replaced with a tighter-fitting one. Less comfortable on my leg, but the burning sensation did stop.

The three-week appointment I had for my re-check was one week later -- yesterday. (It wasn't a full three weeks, but that's what I was given.) The day my cast was replaced, I was told that no x-ray would be taken until the following week. Yesterday.

My Awesome Husband Greg went with me for that appointment...

Cast Maker Guy called me back and ordered me up on the table so he could remove the cast. Surprised, I said, "Oh, you're removing the cast before you do an x-ray?" He checked the file in his hands and said, "Oh, we're not doing an x-ray today. It says 'remove cast.' MAHG and I looked at each other. I said "Great!" (And Awesome Greg went out to the car to retrieve in the Big Clunky Stabilizing Boot I'd been issued the night of the break. Feeling confident as I was that my healing was proceeding remarkably well, I had insisted on bringing it with us.)

MAHG watched with ghoulish interest while CMG cut my BBC off with a gigantic circular saw. (Not really -- I just wanted to say that.)

The cast off, CMG then left the room for a minute. And here's what I imagine happened:

He glanced at my file again, and realized that he had been looking at the note that the P.A. had made the prior week after my phone call -- the one that said "Remove cast." It would probably have been on top of the page that said "Re-check in three weeks." Upon reading further, he realized that he was supposed to take an x-ray. That's why he came back into our room and said, "Okay -- I guess we will take a picture now."

The x-ray showed that healing was well under way, if not complete. Things looked great, according to the Doctor who finally came in. The mystery of the how to properly work the Big Clunky Stabilizing Boot was explained to me, and I was told I no longer needed crutches -- Not even one of them!

I think I was supposed to have an x-ray and remain in the BBC for another week. I give credit for the fact that I'm free to God, who never give us anything we can't handle. He could see, of course, that I wasn't handling the Big Blue Cast very well...That, in fact, I was sick and tired of it. So he intervened.

God also gets credit for leading me (through my Amazing Sister Melissa) to some wonderful homeopathic remedies, which I am positive speeded my healing, making that extra week unneceessary. And I love that fun little thing He did, having Cast Maker Guy read my file wrong, demonstrating that even mistakes can be the work of God sometimes!

I am thrilled with -- and grateful for -- the outcome. I'm to go back in two more weeks, at which time I am sure I will be completely released from the need for even the BCSB.

Meanwhile, I will continue to revel in simple pleasures that I once took for granted...and in the way that God answers our prayers!

Vincible

Self-Pitying Self-Portrait, MSN Paint, 2/16/11

Turns out that I am...Vincible, that is. I guess I shouldn't be surprised, but I can't even count the number of times I've twisted an ankle while walking or running. It's always been Oh! Oh, whew -- I'm okay... flex, twist, then carry on. Let's just say it's happened often enough to make me feel like I'm special.

But yesterday was different. I knew it was different as soon as it happened.

First of all, my ankle didn't just bend and flex. It formed an L with my leg, apparently allowing that knobby bone on the outside of it to touch the ground hard enough to snap it. (At least that's how I picture it.)

Also, I didn't just wobble a bit and then right myself. I pitched forward, hollering bad words as I fell. I tore holes in both of my hands, apparently in some half-assed attempt to distract myself from the pain in my rapidly swelling ankle. (It didn't work.)

And even though I tried to convince the two lovely people who rushed to my aid -- and myself -- that I was okay, that I meant to do that, the fact that it took both of them to get my butt off the street and onto the curb was evidence to the contrary.

But I managed to hold it together like one of those "tough cookies" you always read about long enough for My Awesome Husband Greg to come and rescue me. (Glad I'd thought to grab my phone as I headed out!) Once I was safely buckled into the car, though, I lost it.

"It hurts so baaaaaad!" I wailed.

And then, just for effect, I started heaving. (I didn't throw up in the car, though; I was able to save that until we got home.)

The rest of the evening is a long story that needs to be cut short, so let me just say that we spent two delightful hours waiting in the after-hours clinic with a bunch of dripping, wheezing, coughing people who thought there was some magic pill they could take to make the flu go away.

When we were finally given the results of the x-ray, I was triumphant...I don't have a pitifully low pain threshold; it wasn't just a bad sprain; it was a break, and those are supposed to hurt!

My foot was packed into one of those big, clunky, velcroed boots that stabilize everything you put in them, and we were told we'd be referred to an orthopedic surgeon the next day.

And that part was much quicker, easier, and way more fun...

Since MAHG had a VIA (Very Important Appointment), I relied on the kindness of my Sweet Friend Catey for transportation and assistance.

My ankle -- well, my entire left leg below the knee, actually -- is now encased in a fiberglass cast of the loveliest shade of royal blue. Secure and stabilized, it hardly hurts at all (unless myself or MAHG bumps it), and I think everything is going to be all right. In about four weeks. I'm trying not to think about the interim.

And I do have Charlie to distract me...

I Still Love My Dr. Pulmonologist...

For a while, I wasn't sure, though. Really. I thought we might be through...

After treating me so kindly, listening to all my worries, and then sometimes changing his planned course of treatment so that I would feel more comfortable...after making me feel like a real, thinking, breathing person, and not just as a bottomless drug receptacle...after assuring me that I could call him whenever I felt like I was getting sick, or even if I just had a question...After all of that, my beloved Dr. Pulmonogist just turned up...



...[Gasp] missing!



I was sick -- really, really sick. Fever-of-102 sick. I needed Dr. Pulmonologist, but I was told he wouldn't be in this week -- or next. I was offered an appointment with his Nurse Practicioner; I accepted.

Now you know all about My Awesome Husband Greg, right? How he loves taking care of people -- especially me? How, at the beginning of my being really-really sick, he couldn't do enough to make sure I was warm/cool/quenched/comfortable? But I was taking a long time to get over being really-really sick, and life (i.e., The Show) had to go on. It was Valentine's Day, and Greg had obligations to fulfill with The Greensboro Tarheel Chorus...Singing valentines promised must become singing valentines delivered!

So with a fever that should have precluded my operating a motor vehicle (or other heavy machinery), I drove myself to Dr. Pulmonologist's office, hoping for some relief from his N.P.

N.P. seemed like some sort of an angel to me -- But then, I was so wrought with fever, I had hugged the trash can in the hallway because it didn't give me a dirty look when I accidentally bumped into it. She spoke in the most loving, soothing tones. So did all of the other nurses and attendants -- even the one who put that little germ-catcher mask on my face. I know that's supposed to be their job, but I still wanted to lie my head on their collective shoulders and let them soothe away all my aches and pains...

Yep -- In my feverish vulnerability, I was pulled in by all the free-flowing kindness going around that day. That's why I could only argue weekly -- and unconvincingly -- when N.P. told me she was going to inject me with 80 milligrams of prednisone, and then have me take decreasing doses of the stuff for a week. She smiled affectionately when I told her that I'd just gotten that monkey off my back, and didn't care to pick it up again. (Later, sans fever, I realized the smile was part of her caring/compassionate act, and that she really wasn't even listening to me.)

That's why I walked out of that office with prescriptions for cough syrup with codeine, musinex, and an antibiotic I would later discover cost the insurance company nearly 500 dollars after my co-pay. (Poor insurance company.) That's Me -- the one who doesn't want to take drugs...anymore.

So I didn't take them. I smoked herbal cigarettes, hand-rolled by my Helpful Husband Greg. I steamed my head and face over pots of boiling water and sea salt. I ate raw ginger root.

I'd like to say I got "cured,", but I can't. I did, however, recover from whatever was causing my fever/chills/achy feeling all over -- kind of like the flu, but apparently not.

And I did finally have a follow-up visit with Dr. Pulmonologist. Who, although he may have been acting out of fear, asked me lots of intelligent-sounding questions about my holistic remedies, told me he wasn't against my using them, and told me to let him know if anything helped so he could pass the info along to other patients. You know -- kind of like I was his partner or something.

Best of all, he told me that, even though the Pulmonary Function Test I took that day showed that my pulmonary was not functioning as well as it had been six months ago, if I was happy with the way I was feeling, he'd be okay with my not taking any prednisone for a while. (Even though he thinks I should probably be on at least a small dose.)

So because I'm trying to be an optimist here, I've decided to stay in love with my Dr. Pulmonologist, because he lets me make up my own stuff. (If I were not being an optimist, I might think he really doesn't know what to do, and has decided to just wait and see. Hey -- maybe he's hoping for a miracle, too!)

It Waved at Me!

Last week, not to outdone by my Pregnant (but still Dazzling) Daughter Meagan, I had an ultrasound of my heart (aka Echocardiogram)*...

I was ushered into a dimly lit room with a table (the kind you lie on), a chair and some fancy looking computer equipment. The soft-spoken technician with the very kind face had me recline on the table, and explained that she was going to rub some oil on my chest. (Although it's been a few years since I've had an ultrasound -- 23 to be exact -- I remembered that oil, and I braced myself for the cold. But to my relief, what she used was exactly body temperature -- I didn't feel a thing!)

For the next 20 minutes or so, she moved her stylus (or whatever it's called) over and around my chest as she explained to me exactly which parts of my heart were showing up on her monitor. Her voice was so soothing, the lights so dim, my position so comfortable, that I nearly dozed (but wanting to be polite, I tried to interject my "ohs" and "m-hmmmms" in all the appropriate places).

As I said, it's been a long time, but seeing my heart this way was not unlike seeing my babies on up on that monitor...The same shadowy shapes, undulating with life -- In fact, I think I even saw it wave at me...




"Ultrasound" by Kate, 1/11/10 (MSN Paint)


*The reason for the ultrasound was just to be sure my heart is ok now -- to establish a "baseline." I hope that doesn't mean things are expected to change, but due to my Oxygen Deficit Disorder (Scary Doctor Blog, Oct. 1, 2008) I understand that is a possibility. I still haven't heard back from my wonderful and trusted Dr. Pulmonologist, which I assume is a good thing. At the time of the test, I asked the nice tech if she could tell if anything was blooey from what she was seeing. Of course she's not allowed to say, but she assured me that if she saw anything "emergent," I would not be allowed to leave without seeing a cardiologist -- and she didn't see anything like that. (Whew!)

I Almost Forgot! (A Follow-Up Doctor Blog)

"A Happier Doctor" by Kate, August 11, 2009

I can't believe I almost forgot to post a follow-up doctor blog! My last one was on April 27 -- "What the Doctor Actually Said," and bore a picture captioned "Frowny-Face Doctor." It was not a blog I was happy to post, because in it, I had to admit that I had goofed; by listening to my "inner doctor," I had created a scary setback for myself, and was convinced that I never would see the day when I could post my "Ecstatic Doctor" blog.

Well, things are definitely looking up since then! I wouldn't say Dr. Pulmonologist was exactly ecstatic when I saw him in June, but he was certainly much happier than he had been at my last appointment! The results of my Pulmonary Function Test, although not "perfect," were very much "improved" over the ones I had last October (How Does Your Pulmonary Function?). So he seemed very pleased to tell me that I could now reduce my dosage of prednisone to five milligrams a day for two months (which will get me through August), and then, if things continue to go well (and they are!), I will be able to alternate days of five mg with zero mg. Then perhaps one day on, two days off? We'll see.

Of course my plan is still to be able to completely stop taking the stuff, but I'm no longer in such a big hurry. I like not having blue fingers. I also like not gasping and coughing whenever I'm having a conversation or giving a concert*. I like being able to run if I feel like it, and dance without worrying about oxygen deficit. In fact, if things stay the way they are today, I'll be happy!

Well -- with one exception: If things can stay as they are with NO prednisone!

Because I don't like wondering if that powerful little pill...the one which is now causing my hair to fall out and my face to look like a great big giant sugar cookie with eyes...which is making me look like I have an inner tube under my tee-shirt and curls of spun glass outlining what used to be my jawline...if that same little pill isn't doing other, even more horrifying things to parts of me that I can't so easily see! (It does have that reputation, you know.)

Well, I'm glad I got this post out of the way. I've decided that my doctor blogs are the most boring, tedious ones I've written (and for that I apologize); however, they are a way of keeping track of this stuff for myself. (And I do enjoy making different faces on Dr. Pulmonologist.)

I'd like to say I'm now back to blogging with renewed resolve, because I've got lots of other stuff that I'm looking forward to writing about. But I'm afraid I can't make any promises, because I'm being pulled away from blogging by several other obsessions right now. Maybe I'll tell you about them some day. For now, thanks for listening...and keep your fingers crossed about that prednisone!



*Oh -- One more thing that would make me even happier: If I could actually sing!