The Lung Transplant Diary

Posted on June 25, 2015 by lyn414

The Lung Transplant Diary

When I last wrote, I was on the lung transplant list, but I can’t really say that I was waiting for lungs. I wasn’t expecting to be called for many months. Before I dive into the last four chaotic months of my life, I must disclose that my most recent post (December 2014) left me in limbo on the transplant list. However, there was a communication error on my part and it turns out I wasn’t officially listed until January 7, 2015. I only note this because it means that I was listed for transplant a miraculously meager 30-some days before my time came. It’s one thing to know logically that “the call” is coming, but it’s another state of being to actually live with the constant notion that any minute could ignite my new life. I don’t really know where or how to begin a recap of the last four months, however. I want to share my story in all its ups and downs in the hope that I might reach someone and inspire them to be a donor. Without my donor, I might not have been here this year- certainly not a few years from now.

New Lungs Test-Drive

I should start by expressing my ultimate gratitude for the chance to have a new life with new lungs. My donor is my angel. I’m so extremely fortunate. I have as yet been unable to find the words to convey my gratitude to my donor’s family. I’m also incredibly blessed by a phenomenal support system, at the forefront of which is my family. They have been with me through everything and I’d be lost without them. My entire community has also shown me such love and kindness- through their faith and encouragement, I always knew someone was thinking of me and praying. Although this quest has tested me in ways I thought I couldn’t handle, I am STILL HERE. I’m still standing. I’m perpetually working on myself and my health. There is nothing static about my life; things can happen in the blink of an eye.

“The call” happened mid-afternoon, in quite a casual way on February 10, 2015. My mom had just hung up the phone after scheduling my next clinic visit with the Madison pulmonary care team. I therefore almost didn’t answer my phone when my transplant coordinator Kelly called me a few moments later and nonchalantly inquired as to whether I’d “want to have a lung transplant” that day. She could have been reading the want-ads out loud, for as calm as she was. My body began to shake violently as I tried to digest this weighted question. My mom saw my eyes develop into wide saucers as Kelly imparted to me a last few pieces of advice and direction before I jumped into action. Luckily my mom was home early from work for the day, and my dad was working in the woods (a self-employed logger) no more than 20 minutes from home. After ransacking the house, trying to plan and pack for something so momentous, the three of us were on the road in about 45 minutes. I also called my sister Sarah (Dr. Carlson, actually) and she immediately booked a flight to meet us in Madison.

From this point on, timelines get blurred and some events seem fuzzy because of the nature of the whole ordeal. Medications, emotions, and situations changed how I perceived things, and changed my reality of things so one can imagine how difficult it was and still is to sort out everything that’s occurred.

Waiting for surgery

Waiting for surgery

The transplant itself went extremely well, I’m told. I was taken into surgery late on February 11th and it was finished about 8 hours later on the 12th. In a quick recap of events, I began this first transplant hospital stay by spending about 2½ weeks post-transplant on the transplant unit until I grew well enough to transfer to the rehabilitation unit, where I worked on strength, endurance, and stretching exercises for an additional week. After multiple hurdles and triumphs, I was discharged on March 13th to stay at a Madison hotel.

After surgery

After surgery

This is obviously the abridged version of the odyssey that has become my story. In more detail, the surgeons and those whom assisted with the transplant were pleased with the results, and within the first 6 hours after the surgery, they decided that they could take me off the ventilator (the breathing machine) and let me breathe on my own. As is turns out, my body was just not quite strong enough to breathe for itself. I was struggling too much and needed more oxygen than I could obtain on my own, so the next day the surgical team had to sedate and reintubate me (put the ventilator’s breathing tube back into my windpipe). After a few days on the ventilator, the team tried it again- they took out the tube and I felt great. I even got up and walked to the nurses’ station with assistance. As I’ve learned, though, anything worth having is not usually easily attained- I started to backslide again and I had to be re-reintubated (that’s the third time, if you count the initial intubation). After my body could rest some more, I was finally able to be taken off the ventilator for the final time. I don’t really recall much of that time after the transplant, but I do remember that simply walking a few yards was incredibly difficult. My weakened body had to push itselfself mentally and physically with the encouragement of my family; if I wouldn’t/couldn’t get up and keep moving about, I might end up back on the ventilator. I can’t credit my determination alone, though, because with every step of the way, there were people cheering me on and assuring me that my progress was nothing less than stellar.

First walk!

First walk!

At some point among the multiple intubations, my vocal cords were damaged. I found I was unable to speak above a whisper, and therefore swallowing was also precarious. Because my vocal folds wouldn’t close all the way, any small food particles or liquids could go down my wind pipe into my new lungs instead of into my esophagus and then stomach as it’s supposed to happen. If anything were to accidentally get into my lungs, it could cause very severe pneumonia to develop, which would be detrimental to such new and fragile organs. Therefore, no eating or drinking. This whole situation was only one of many complications that arose after the transplant surgery. I also developed a deep blood clot in my neck/upper arm region from having an IV placed in my jugular vein. This seemingly small problem posed larger problems further down the road.

Two of the chest tubes that were placed into my lungs were left in to drain all the fluid that collected as I recovered. (I had come out of surgery with 5 chest tubes.) They wouldn’t stop draining even after I left the hospital to stay at a hotel, and the doctors didn’t want to pull them out too soon and have the fluid collect in my lungs. After 50-odd days with these painful, inconvenient tubes, the doctors took a leap of faith and pulled them with the hopes that my lungs would acclimate to the fluid and eventually equalize. I would have no such luck. Approximately a week passed before the fluid was too much for my lungs and caused me to be short of breath and gain an excess of water weight. This caused me to be hospitalized for a second time. I didn’t fully know, even at that point, how much harder this journey would become.

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Finally Listed

Posted on December 29, 2014 by lyn414

Lately I’ve been trying to digest the idea of my impending lung transplant. Every other thought in my head is of the transplant. Questions that I never thought I’d have to ponder now swim in my consciousness. The most tiny detail can derail an entire morning. I find myself snapping at unrelated problems- those that would have never been an issue on their own but echo heavily now in the light of this enormous event. My fingernails and cuticles have been anxiously chewed to the point that they’re bloody and raw. I seek reassurance that this will all turn out okay while simultaneously dismissing such solace for fear of being too optimistic. In short, I feel like a basket case.

While hospitalized at Madison’s UWHC in October, my doctors and I collectively decided that I didn’t need to get put on the lung transplant list immediately. I was sick but not critically so. This was a relief to me, seeing as I was still having a hard time getting on board emotionally. I was torn between wanting to be listed ASAP so I could be that much closer to taking my first breath with healthy lungs, and hoping to delay this entire process and push it all to a corner of my mind. It seemed I had more fear than faith. I was in need of a sign, a symbol, something that would tell me unequivocally that it was the right time to get listed.

I hadn’t even been home from my October stint at the UW hospital for a month when it became obvious that I needed to be admitted again. (This latest span ran from Nov. 24th to December 9th ; with another two weeks under my belt, I’m back home awaiting the New Year.) Getting sick again so quickly indicates that my body, and the germs that infect it, are no longer responding to the IV medications that are available. There’s not much any doctor can do anymore for me. It’s scary to think that I mostly likely won’t “get better” to the extent that I used to. I might just maintain a very meager baseline. It’s quite possible that until I get my transplant, I will mostly be homebound (or hospital-bound when I’m acutely sick), struggling to breathe, needing to wear oxygen, clinging to the hope that I will get “new” lungs in time. Which also means I’m inadvertently hoping that someone will no longer need those lungs, which means some family’s awful tragedy will be the answer to my family’s prayers. Miraculously, I can be given new life where another life has ended.

After doing a lung function test when I first arrived at the hospital, I learned that my numbers were even lower than when I was sick last time. Because I felt so shitty, I knew that these numbers were appropriately representative of my worsening condition. They reflected the persistent wheezing and gurgling of my labored breathing; the loud, harsh coughing; the inability to physically exert myself in any way; and the copious amounts of phlegm that accompany each cough. If I had needed a sign that it was time to get listed, this was it. My mom and doctors voiced their opinions, which coincided with my own thoughts- I should list now before I become too critically ill.

When I told one of my transplant coordinators that I was ready to be listed, they contacted my insurance to get approval, and had all of the “i”s dotted and the “t”s crossed. I officially accepted the offer to be put on the transplant list on Tuesday, December 9th. I felt as if I should have had to sign my name in blood in some momentous ceremony. All I did was give my verbal consent. A couple of emotion-charged tears were shed by more than one, and I immediately began going over the possible scenarios that could take place- both good and bad. Since that fateful moment, I’ve been struggling to put the details out of my mind and just remember that this transplant is going to save my life, and make it worth living. Period.

Life will never be the same now. Until the actual surgery takes place, I will be tied to my cell phone, obligated to answer any and all phone calls. Because there is only a four-hour window for me to get to UWHC, I will need to be ready to go within approximately 30 minutes so I can drive an hour to a nearby town and get on a life flight with a service that I’ve been in touch with. From there I will fly about an hour to Madison. (Unless there is extra time to drive the 5 hours that it takes to get there.) Once I get to the hospital, I’ll hand my life over to a team of experts and pray that all goes well. What happens then is largely unforeseen…

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Getting Listed

Posted on October 20, 2014 by lyn414

Before I get to the good news, I think it’s crucial to write about the last few months and what took place in that time. This is the much abridged version of events, however, seeing that I need to get everyone up to speed. Yet even if I had the luxury of time and space, I couldn’t possibly describe all that has transpired or all the emotions I’ve experienced since last I wrote. Bear with me here.

During my stay at the UW Madison Hospital this past February (see “I Hate CF”, posted February 24th, 2014) it was suggested that I complete a lung transplant evaluation just to see where I might fall on the list of others awaiting a transplant. Even though the infection I had in February was quite severe, I wasn’t thinking that I would really need to put myself on the list any time too soon.We simply wanted to present my case to the transplant team to see if I could even qualify to be listed at all.

So, we set the evaluation up for the second week of June. By the time I was set to return to Madison for the evaluation, I had realized I was at a point where I needed to get on the list. It was no longer a matter of experimentation. Things were now more serious. Therefore, the results of the tests I underwent would be of utmost importance. The evaluation was a four-day process to test, monitor, check, evaluate, and investigate all that is necessary to know about me when being considered for a transplant, including CT scans of my sinuses and chest, X-Rays, blood work, dental exam, acid reflux testing, heart catheterization, psychological consult, financial consult, cultures of my mucus, bone density scan, etc.

It was a bit taxing and extremely overwhelming, but I made it through the evaluation unscathed. Back at home, I assumed it would be at least a few weeks before the team could process my numbers and make their decision as to whether or not I could qualify to be put on the list. It took 4 days. I got the call in the afternoon.

My little balloon of hope burst when the transplant coordinator informed me that the team met and there was a problem. My sinuses showed some kind of infection or scarring or something. I could hardly focus on her voice after I heard that I was not able to be listed- things got muffled in my own head. My mom saw the dismay on my face, so she took over the call and spoke with the coordinator. We decided that another visit to Madison was necessary in order to see an Ear, Nose, and Throat Specialist (ENT). I felt hopeless. My sinuses seem to always be infected, so my worry was that this chronic problem would keep me from ever being put on the transplant list.

After analyzing my CT scans and looking into my frontal sinuses with a probing camera device that was pushed up my nostrils, it didn’t take very long for my ENT to conclude that my sinuses were actually pretty clear. He said there was no obvious infection and no real reason to operate on my sinuses, although after having had 5 sinus surgeries, a 6th wouldn’t have phased me. This was the outcome I was hoping for, even if it was the same one I had doubted would happen. (My credo: “Hope for the best but expect the worst.”) My ENT said he would pass along his findings to my transplant team, giving them the last piece of a puzzle that would hopefully show my need for this transplant. As far as I knew, there was nothing else standing in the way of me getting put on the transplant list. I felt cautiously triumphant. Again, I went home and waited by the phone.

Approximately one month later, on September 11th,the nation mourned and remembered those whose lives were lost. That same day, my life was potentially given a second chance, should I accept such a gift. My transplant coordinator called me again with a question that was so simple, it was much out of proportion to the weight that the answer would hold: “So, do you want to be put on the list for a lung transplant?”

This was the huge, life-changing question I’d been waiting for. Its immensity held sway over my every thought. The answer, though, had seemed straightforward until I was finally asked. Now, many things ran through my head. Too many. Especially when I was told that the list was relatively short at that point. I wasn’t quite ready. I decided to hold off on accepting a place on the transplant list. I explained that I was extremely thankful and honored to be offered this opportunity. However, I felt as though I needed to talk to my family, become more educated about the process, talk to someone who has had a lung transplant, and make sure I was emotionally ready. To be clear, I will say “yes”. It’s just a matter of when. Once I affirm that I want to be listed, there is no room for passivity. That is why I believe it’s prudent to wait until I’ve completely wrapped my head around the idea.

A transplant is such a bittersweet transaction. Like two souls exchanged, one life for one death. Am I worthy of this extraordinary gift? Can I live as good a life as the one whose breath I will breathe? Are we playing God? These are but a few of the thoughts that I am able to snatch out of the swift currents of my mind.

I am getting sicker, though. Once again I am writing this from my hospital room in the UW Madison Hospital. That’s my reality, so I don’t have long before I must list myself. Every few months now I feel a marked decline in my ability to breathe. Oxygen often eludes me- something invisible and intangible that makes or breaks me daily. This explains my absence on this blog. I’m often SO exhausted that my fingers can barely press hard enough on the keys of my laptop to relay my thoughts into text. I’m told that if I receive a lung transplant, I will have more energy and be able to breathe like a normal person. I just can’t fathom such a gift. However, it seems as though that dream is not as far off as I had thought.

If you are not an organ donor yet, please go to your state’s donor registry website and sign up today! As of October 18th, 2014, there are 123,938 people waiting for an organ that will save their lives. Some do not get that gift in time because the demand for organs is greater than the supply. Even if you have it marked on your driver’s license that you’d like to be a donor, the only way to be certain that your wishes will be carried out is to register yourself on the appropriate site. Don’t wait; BECOME A DONOR TODAY!

Michigan Donor Registry: www.giftoflifemichigan.org

Wisconsin Donor Registry: www.donorregistry.wisconsin.gov

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CF Awareness in May

Posted on May 15, 2014 by lyn414

May is Cystic Fibrosis Awareness Month. This is wonderful news; cystic fibrosis needs to be brought into the spotlight in order to attract more donors and fund more research. I’m somewhat stuck in a paradox when it comes to my cystic fibrosis. I live in a small town where everyone knows everything about everyone else, right down to his/her blood type and driver’s license number. So I would think that people would freely raise awareness for cystic fibrosis, knowing that someone in their little community would benefit. On the other hand, since cystic fibrosis is so rare (only about 30,000 people in the United States have CF), most people in my area of the world don’t know anyone besides my family and me who’s been affected by it, so they may choose to support other charities. And therein lies my frustration.

I would really like to see cystic fibrosis get more publicity, but some other diseases are much more familiar to the ordinary person than CF is; cancer, asthma, muscular dystrophy, etc. These seem to take up the general public’s awareness and charitable feelings, leaving little room for CF to get recognized and receive donations. I have to admit that I kind of resent this. For example, when I see all the windows at my local grocery store overflowing with paper ribbons representing dollar donations for other illnesses, I feel saddened; when it comes time for the CF ribbons to be sold, they barely cover one window pane. It’s hard to see this without feeling a lump in my throat. I just wish that more people understood the disease with which I live; I don’t want every cough of mine to be confused with a severe cold, I’d like to be able to huff and puff while climbing a set of stairs without people assuming I’m smoker, and life would be SO much easier if the majority knew that CF entails much more than coughing and taking handfuls of pills.

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Cystic fibrosis affects many different parts of the body. 

Perhaps it’s my own fault, however, that my community is only now learning about my cystic fibrosis. Until I got to high school, I refused to talk about CF. For some reason, I was embarrassed to have been born with something so serious, something that I didn’t understand- I didn’t know why I had to do so many treatments, take so much medication, and have so many appointments with my doctor. I hated that part of me, because I viewed it as a weakness. When I developed CF-related Diabetes just before my Freshman year, though, I could hide it no longer. So I began to explain what was really wrong with me, and dispelled so many rumors about cystic fibrosis and the role it played in my life. Now I want to shine a light into every dark corner of CF so it can be fully comprehended, and so those with CF can be understood in turn.

I think one aspect of CF that is most misinterpreted is the life expectancy of CF patients. The truth is, it’s disconcerting to think that had I been born even 5 years sooner than I was, my final days might have been upon me right about now. In fact, it was only in the 1950s when those born with cystic fibrosis weren’t expected to live long enough to begin elementary school. The median life expectancy does improve slightly with each year that passes. Right now, about half of all CF patients survive beyond their late 30s to early 40s, which obviously means that half don’t. And meanwhile, we get sicker. This is unacceptable, and I feel the need to educate people about CF so more people will donate to CF charities that are working on a cure.

So, this month, I want to ask everyone to think of cystic fibrosis and the people that are affected by it. Make yourself more aware of this shitty disease; visit any of the following websites to learn more about cystic fibrosis, and how/when you can help the cause.

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http://www.cff.org/ -An awesome website with everything you could ever need to know about CF, as well as a link where you can donate.

http://www.cysticfibrosis.ca/about-cf/what-is-cystic-fibrosis/?lang=en -This site is from Canada, but still has some great information about CF.

http://www.cysticfibrosis.org.uk/ -This site is from the UK, but it’s very useful and has lots of important information about CF.

Go to http://blausen.com/?Topic=9262 to see a short video about CF.

http://www.medicinenet.com/cystic_fibrosis/article.htm

http://www.healingwell.com/library/cysticfibrosis/info2.asp 

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Hairy Situations

Posted on April 5, 2014 by lyn414

There are myriad ways for people to deal with stress and/or anxiety. Some people go for a power run. Some people play the drums. Others might go to the driving range. But a small percentage of people turn those emotions inward and do harmful things to themselves. These actions are referred to as “deliberate self-harm” behaviors, and I am included in that group of people. I have trichotillomania.

Trichotillomania, a type of deliberate self-harm which affects a scant 2 – 4% of the population, is a rare disorder that causes its sufferers, like me, to compulsively pluck their hairs out in extreme excess. We pick at the hair on our heads, arms, and legs, as well as our eyelashes and eyebrows. We often find ourselves with bald spots after a plucking session, though we hardly knew what we were doing because we became so mesmerized and subdued by the plucking. (I have frequently stopped myself after plucking at my leg hair while in the bathtub, to realize that the water was cold and about 2½ hours had elapsed.)

If I recall correctly, I think this affliction began sometime between junior high and high school. However, I can’t pinpoint any one specific event, or even a series of events, that caused me to begin damaging my body in this way. Perhaps the normal grooming of my eyebrows led to my trichotillomania, as I always did find satisfaction in ridding my brow line of perfectly wrong hairs. I also recall removing black hairs from my blond mane since before I was 10 years old. To me, it was thrilling to hunt down and eradicate these black hairs, especially if they were slightly more coarse than my normal hair. I only wish I knew why. My problem didn’t grow too serious until high school when I literally pulled out EVERY SINGLE eyelash I had over the course of a couple stressful days. I had to line the rim of my eyes with black eyeliner in a feeble attempt to look as though there was at least some semblance of lashes. It was awful and ugly, and I’m not only referring to my appearance.

While in counseling, I learned that this problem was not just some quirk of mine, but an actual psychological ailment. It was very helpful to know that there were others like me. There seems to be no real consensus on the main cause, nor what class of disorder this should be considered, though. I desperately tried a variety of ways to cease this behavior. One suggestion for therapy was to buy a Barbie doll from a thrift store and pluck HER hair. I honestly gave this one my best shot, but it wasn’t the same. I think the uniformity of Barbie’s hair eliminated those “special” hairs; the ones that are much darker than the rest, the ones that are much lighter, the more coarse ones, etc. When I pluck my head hairs, there is usually something that draws me to each hair, as I mentioned earlier- I don’t just pluck sporadically. A method to quit plucking my eyelashes was to affix long acrylic nails to my real nails so I couldn’t really use my them to pull out lashes (which I usually do- tweezers are more for legs and eyebrows). I simply destroyed my nails trying to pluck and/or I reverted to tweezers. I was unstoppable. I tried many methods before turning to medication for help. This finally helped abate the all-consuming urge to pluck, but when I’m exceptionally upset or stressed I will still do so.

Through the years, my trichotillomania has also progressed to include dermatillomania- the picking of one’s SKIN. I chew on my cuticles, pick at any skin lesions, and dig at the skin where I’m trying to remove a hair. The dermatillomania is hardly a problem compared to my trichotillomania, however. My lashes are now scarce even if I do manage to let them grow because years of plucking has damaged the hair follicle. My legs are riddled with scars, ranging from small red dots to deeper, pitted, purple marks where I plucked and DUG my tweezers into the skin to grab a hair that was apparently too short to pluck. This disorder leaves its mark in many ways, but physically is only one. It’s embarrassing, extremely time-consuming and sometimes painful.

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I’m unsure how the Diagnostic and Statistical Manual of Mental Disorders (the DSM), lists trichotillomania, but it’s otherwise sometimes classified as a type of impulse control disorder, and has also been considered to be an addiction, or an obsessive compulsive disorder. It can be related to any number of psychiatric diagnoses, and can be triggered by various situations and circumstances. The one common factor is that the plucking seems to soothe and give the trichotillomaniac a sense of control and calm. Fortunately, this is one of the more mild deliberate self-harm behaviors when comparing it to the likes of anorexia and deliberate cutting (both extreme types of self-harm).

Aside from all of these terms and diagnostic jargon, I can tell you what the DSM can’t. I can explain to you how embarrassing it is to have literally, absolutely no eyelashes for weeks during your Freshman year of high school, being gawked at by students and teachers alike. I can show you scars from years of picking at the skin surrounding hairs that were audacious enough to resist the first plucking attempt. I can tell you that it’s incredibly frustrating to have your mother and boyfriend confiscate your 5 pairs of tweezers (including a hidden emergency pair). My eyelashes seem to almost tingle, beckoning me to pull them out, and once I start, it’s easier to find a needle in a haystack than it is to stop pulling. I can’t resist plucking the hair on my legs once I see them while bathing- I barely need to shave once I’m done plucking. Hair on my head is plucked according to its shade- extremely black hairs are pulled zealously, while the lighter, blonder hairs are left alone.

My trichotillomania is triggered by stress, anxiety, and sometimes depression. Subconsciously, I also think perhaps I pluck because it is sometimes the only thing I feel I can control in a world filled with breathing treatments, dissatisfaction with my body, doctor appointments, limited finances, relentless coughing, etc. In truth, it seems that there is always a reason to pluck.

This is not a public service announcement, but I hope it sparks some thought. It would be so wonderful if everyone knew how to function with daily ups and downs, but I struggle with this. Sometimes pulling and plucking hairs is my coping mechanism, though every hair removed feels like another failure. So until I learn to focus on the issues at hand instead of reverting to the comfortable but harmful ways of trichotillomania, I may be lash-less, scarred, and balding. But I’m patient, for self-worth and self-love regenerate just as quickly as hair regrows.

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I Hate CF

Posted on February 24, 2014 by lyn414

Sometimes I can almost forget that I have cystic fibrosis. Almost. Then a bout of pneumonia, or a lung bleed, or sinusitis, for example, lands me in the hospital and the disease crashes down around me all over again. This type of wake-up call occurred in big way a little over a week ago, when I was reminded of what a cruel, crippling, vicious, fatal disease cystic fibrosis is.

The details that led up to this hospitalization, from which I’m currently writing, were much the same as any other time I’ve been ill. An infection settled itself deep within my diseased lungs and caused me to cough up copious amounts of mucous, and wheeze, and gasp for air. This was accompanied by fatigue, headaches, dizziness, and so on. This time, however, I deteriorated much more quickly than usual, and it seemed as if I was getting nearer to a critical state each hour that passed.

In addition to the basic symptoms I’d had for a month or more, I found myself needing to wear an oxygen cannula under my nose in order to move around freely without setting off a coughing fit. Then the amount of oxygen I needed increased steadily. Each day it seemed that my lungs were being progressively saturated with cement instead of this precious oxygen. By the time I finally sought medical intervention, I could barely move around at all, even while wearing oxygen. My coughing was accompanied by gasping and gulping for air. I felt as though I would lose consciousness with each coughing spell, and the result was an excruciating headache that seemed as though I were being stabbed in the cranium. My lungs ached and crackled, and piercing pain and heavy pressure set in. Each coughing episode would begin and end much the same: cough, cough, gasp, cough, gasp-gulp, cough, cough, cough, gag, gasp, deep breath in, dizziness, headache, breathe, repeat.

My primary doctor knew I needed IV antibiotics, but before he could formulate an effective combination of medications for me, I’d already become a serious case. So I bypassed him and my regular hospital and headed to the only other facility that I go to- the University of Wisconsin Madison Hospital.

My mom and I made the six-hour trek to the UW Hospital, where the pulmonology department is quite well versed in treating cystic fibrosis patients. Loaded with oxygen tanks in the backseat, Mom’s trusty Toyota became the ambulance that delivered me to the safety of this hospital. Upon checking in at registration, I was immediately asked to take a lung function test to assess how my lungs were doing as compared to a predicted set of numbers. One very important measurement showed that I was testing at only one percentage point higher than the unofficial percentage at which a CF patient typically begins discussing a lung transplant. One measly, tiny, percentage point. Such a small number, but so extremely important and symbolic to me. Taking into account how shitty I felt, I was not at all surprised by this result. I became truly afraid at this point, though, because I realized that I would have to be comparably sick before any transplant facility would seriously consider giving me a set of lungs. In other words, I’ll practically be on my death bed when the transplant finally happens, assuming it does happen at all, and that doesn’t seem right to me. I don’t want to spend months in limbo, barely alive, hoping for some other family’s tragedy to become my second chance at life. That’s simply a reality upon which I try not to dwell.

The team at the UW Hospital set up a treatment plan for me, and it began to take effect only a few short days after my arrival. It was as though a weight lifted off my chest, and I was able to draw priceless oxygen into my battered lungs. For the first time in months, taking a deep breath wasn’t painful and it didn’t induce violent coughing. The doctors decided that it would be best for me to stay as an inpatient for the entire two week course of antibiotics, so here I sit, hooked up to an IV, doing nebulizer treatments and chest/lung physiotherapy four times each day, feeling much better now, and finally seeing some light at the end of this proverbial tunnel.

Despite the severity of my condition, I knew that I wasn’t going to die this time around. And I probably won’t die the next time I get really sick, either. But someday I will, and that’s just the plain truth. That’s what keeps me up and running- the same reason anyone else in the world makes a “bucket list,” regardless of health or lack thereof; fear of dying can either cripple you or motivate you. I choose to utilize that fear, and let it push me to learn and see and do new things. I just want to embrace life fully and live out loud, and hopefully make a small difference while I’m at it. Being able to reach out from my hospital bed by writing this is a pretty damn good start. Here’s hoping someone is listening.

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Growing Pains

Posted on February 12, 2014 by lyn414

I sometimes feel like everything I could have is just inches from my grasp- an apartment of my own, a better retention of the Spanish language, a set of firmer biceps, etc. So when I become intent on obtaining something, I can put the weight of the world onto it. Trivial pursuits become wars of manifest destiny. I believe I do this because I have a fatal disease that comes with a timer whose tick is the soundtrack in my everyday life. At the risk of sounding morbid, I won’t be around for any more pursuits, trivial or otherwise, once that buzzer rings. Therefore, even the mundane becomes important because that might be all I have the chance to achieve. From that perspective, the mundane doesn’t look so bad.

Last summer, after having come out of a 19-day hospitalization in February, I stumbled upon my new desired conquest. It came about after my mom had proposed a simple plan for me to have a garden. Her design included a dozen or more large flower pots arranged on an old picnic table that was set in the sunniest corner of our yard. A garden was an idea I had tossed around for a few years, so I had already been plotting for peas, carrots, radishes, beets, cucumbers, and tomatoes. Yet before we had even bought the seeds and soil, my most ambitious plans were truly for growing lavender.

Highlighting the fact that it wasn’t exactly typical for lavender to grow in the midst of a vegetable garden, my dad asked what lavender even was. I told him it was some kind of flower-thing, because I myself was actually unsure of the actual taxonomical classification of lavender. (I’ve read it’s a flower and an herb.) After he further asked what one does with lavender, I had to stop and think about it. I mentioned things like potpourri and homemade soap, but, truth be told, I didn’t really know what I was going to do with the lavender. I only recalled that a friend of mine had a pestle and mortar set full of dried lavender buds at her house when I was in junior high, and her mother would take the pestle and grind the buds until the aroma was released. This simple, heavenly thing inspired me at the time to attempt to grow lavender of my own in a small pot on the windowsill. Unfortunately, I was unsuccessful at a time when success was quite important to my shaping psyche. The only thing that sprouted from this attempt was a taste of unexpected disappointment and, moreover, a fascination with this finicky plant. With this passionate preoccupation budding slowly over time, lavender became the white whale of my gardening aspirations, and one more undertaking onto which I pinned my hopes and dreams.

Apparently, any gardener worth their blue ribbon-winning beans knows that lavender is a tricky flower to grow. Many buy a starter plant because they don’t have the patience or skill to grow this beautiful, aromatic perennial from seed. Of course I did not know this. I only learned this after the fact from reading how-to articles about lavender. I was such a novice gardener this past summer, that I had no clue I was so inept. I had figured (or hoped): put soil into pots, place seeds in the soil, water regularly, and reap the inevitable yield. I was so naïve. I planned for one pot outside and one pot inside because I didn’t know which scenario was more conducive to the growing of lavender. Then I faithfully bid Godspeed to the tiny little lavender seeds and nestled them in a bed of Miracle-Gro’s best blend.

Now I must tell you that I’m certainly not the most patient person you’ll ever meet. It’s just one virtue that I will never pick up. I knew that this garden, however, was going to require at least some patience. So I had planted my vegetables and lavender with hopes that the garden gods would expedite the bountiful blossoms. Each night I routinely watered and sang to my dirt-filled pots. The weather at this time became extremely humid and quite sunny. It was therefore no surprise when the first veggie crops sprouted after only six days. (I secretly suspected that my singing was responsible.) The perfectly formed, tiny green florets were nothing short of a miracle. I inspected them carefully, in awe of the growth that I had helped facilitate. But such rapid results were actually regrettable for my lavender obsession, for I now held the unreasonable expectation that they, too, would have such a hasty growth rate. I faced disappointment again.

In the midst of the burgeoning vegetable bounty stood my lonely pot of soil with lavender seeds. Only a few scant weeds poked through the soil. I allowed them to grow, however, just in case my untrained eye was unable to discern a weed from an early blossom. After watching every other planting endeavor prove fruitful, I began to wonder anxiously why this plant alone would not materialize. My heart sank as, week after week, my lavender refused to take hold. This pursuit had become another metaphor for everything important in my life. The one plant I was truly excited to grow was the only one that wouldn’t.

Just around the point at which my tenuous patience began to wane severely, just when I was about to solidify my failure and send my lavender (or lack thereof) to the compost pile, a small miracle happened. It was somewhere between week eight or nine of Lavender Watch 2013, and I was watering my pride and joy early one balmy evening. Like some tragic comedy, I had been watering the weeds that grew in the lavender pot. My broken heart couldn’t bear to abandon ship, though the moment was nigh. This time, though, as the slight mist from my garden hose grazed the mishmash of greenery in the lavender pot, I could have sworn I caught the scent of that elusive flower on the wind. I nearly knocked over my towering pea plants as I whipped back around to where I’d smelled the fragrance. My nose, like a bloodhound, sniffed it’s way to the source: one of the little clusters of “weeds” was not a weed after all. By golly. I had grown lavender.

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After weeding, this first lavender shoot remained. July 2013

 

I had to wipe away a few small triumphant tears before shouting for my mom to come outside and verify that I indeed had succeeded, that I’d actually had my lavender budding this whole time right beneath my nose. What I thought was eluding me had been mine for some time already. For at least a week, it turns out that while I jokingly cultivated these weeds, my lavender was also in there somewhere. What I had wanted was with me all along, unbeknownst to me. Had I literally stopped to smell the roses, or lavender as the case may be, I would have saved myself much self-doubt and heartache.

So I may become hyper-focused on things that others deem trite. My brass ring might be something quite simple. I can seem obsessive. But it’s these little victories that make up my life right now. Of course, sometimes I want to shoot for the moon and do incredibly grandiose things but I think many people like me feel that way. What we don’t often keep in mind, is that the moon isn’t so far away, and incredible things can come in the shape of small, purple flowers.

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This is my lavender as of February 12, 2014. It thrives indoors until I can bring it out under the sunshine of summer.

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Fresh Air

Posted on February 3, 2014 by lyn414

 

This is my first valid attempt to write something that doesn’t make you want to crawl in bed and cry. When I was in my adolescence, poetry was an outlet for my depression and almost all of what I wrote in my journals was extremely gloomy. I even prefaced a collection of my poems by stating: “You’ll never understand these words until you’ve hated yourself and everything you know.” I became quite adept at crafting my life in words, and I wrote some worthy poetry in my depressed state. However, this unfortunately lead me to feel as though my serene and blissful feelings (and yes, I did have many) weren’t as poetically valid as my dark ones since they didn’t yield the same creative results. I therefore never really learned how to embrace optimism in writing because contentment equaled boredom in my opinion. It’s a shame, really, to have lived a life that was as filled with elation as it was with melancholy, and only find words to describe the latter.

So here begins my journey anew; a life in which the sound of my laughter can heal, my pen does not drip only pain, and a minor setback doesn’t need to become a 3-page dissertation on the futility of faith. Instead of pessimism or optimism, I will choose realism and let the cards fall where they may. It’s important to write about (and experience) joy and hope, just as it’s important to acknowledge the shadows sometimes; focusing on one often highlights the existence of the other.

In order to move forward, though, there is one matter that must be addressed. I do so not to shock or elicit sympathy, but to simply establish the framework from which I write. I have a genetic disease called cystic fibrosis that affects many areas of my body, but for me it’s mostly my lungs that are the problem. CF will shorten my life, but there are treatments and medications that are available to me to keep myself as healthy as possible until there is a cure. (And there WILL be a cure!) As one might imagine, I have some coping issues because the myriad things I cannot do and will never be able to do is, frankly, pretty shitty. My depression stems mostly from having cystic fibrosis, so I might be tempted to say that life without CF would be damn near perfect. However, I often think that my life is as great as it is partly because of my CF, not in spite of it. I don’t mean to trivialize my disease, though, because it is a hardship that few can understand. It reaches its ugly fingers into every aspect of my life, so in order to understand where I’m coming from, you must know where I’ve been. So please follow me on this new adventure as I better learn who I am, what I can give to the world, and how to catch my breath. 

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