Forum Replies Created
June 23, 2022 at 3:12 pm #18490
Luisa. You sound like a younger me because, if not for hemoptysis, I would hardly know I have cystic fibrosis. Do I have PTSD as a result of the many episode of hemoptysis I’ve experienced over the years? Probably, yes.
I do my best to prevent CF from dominating my world. It mostly hovers like a malevolent shadow, a lingering cloud in my sunny sky. Periodically, it steps out of obscurity and slaps me silly — reminding me that it could all change regardless of what I do to control the situation. As a matter of course, I work hard to ignore this steady drumming in my head. Sometimes, I even pretend it does not exist.
To illistrate, this happened 3 years ago.
A Sunday night outing. It was a slightly chilly Seattle evening. I went to the movies with my son Adrian. We saw Black Panther. Very enjoyable movie. Popcorn, soda, and junior mints — just ideal. It felt like everything in life was right. Just enjoying a carefree evening with my son. I felt good. No, I felt on top of the world!
We stepped out onto the sidewalk and into the bustling Seattle night. We walked about ½ block. I took a deep breath of crisp fall air. Immediately, my chest filled with blood. Trying not to vomit blood onto the sidewalk I stumbled to the car. I told my son to drive to the nearest emergency room. I’m bleeding all over the inside of the car. Stark raving terror. Will the bleeding stop this time?
My son, to his credit, does not freak out. He has spent the past 28 years watching me survive these episodes. He just drives to the emergency room and tells me to hold steady.
Maybe you know the rest. Community clinic emergency room – no one really knows how to deal with this. All the blood is unsettling… Feeling a little lightheaded due to the blood loss. Also, experiencing that familiar bizarre sense of euphoria that follows whenever I’ve lost a lot of blood quickly. Soon, the bleeding slows from a flood to a trickle. Just coughing up old blood, remaining as inert as possible, and hoping for stability. 6 hours later, I am transferred to the University of Washington Hospital emergency room. This is the hospital where my Cystic Fibrosis doctors hang out. It is the weekend, so I get the pulmonary physician on call. He knows my primary CF doctor. I tell him the story. I need oral anti-biotics now. I need a PICC line tomorrow. I need IV antibiotics stat! Chest x rays are going to reveal…you get the idea. To his credit, he listens, takes most of my advice, and orders it up.
1 week later, I am at home with a PICC line infusing 2 heavy duty antibiotics. 3 months later, I feel good again. I almost forget about that pesky humming in the background. Except we are now talking about lung transplant–again. The humming gets a little bit louder.
I did not know I had CF until age 34. I am now 66. For the past 30 years, I have charted my lung function to try to predict the future. It was looking grim until Kalydeco came along 14 months ago. My prognosis got a major reset. Now, I am working on a new timeline. Not sure how realistic this is. My wife observes that I could get hit by a Mack truck tomorrow and then this CF angst means nothing. Except, CF is the very real bird in my hand and the Mack truck is, well, a potentiality not a probability.
This is my experience with CF. Me and my shadow Mr. Hemoptysis. In between these moments of stark raving terror, I feel almost normal. Almost.
February 8, 2022 at 2:54 pm #17978
As I see it, this entire discussion reduces down to personal responsibility for the choices we make. If you fear a vaccine more than you fear being rejected for organ transplant that is your choice. And the consequences of your choice are your responsibility. The shortage of organs from doners when compared to the demand by dying people makes it imperative that the organs that are transplanted are given to those with the best chance of survival. 75% of the people in ICU that die of Covid are unvaccinated.
August 24, 2021 at 3:46 pm #17370
Peter Sellers as “Chance the Gardener” directed by Hal Ashby.
CF would not be the central part of my story. It is not the reveal. The reveal is how fickle life can be and how tied we are to random encounters with time and place and other people. These encounters can make us soar or they can make us crash regardless of how we try to control the outcome.
This is not a dark place. This is a place of peace. Be a good person. Do your best. Leave the rest to the fates.
June 19, 2021 at 11:26 am #17073
As much as I respect the medical profession, I do not worship at its feet. Like most CF patients, I do my best to know my disease and how it impacts my health. I advocate for myself. If a doctor is unable to handle my micro-management then I find a new doctor. Fortunately, I live in Seattle and we have a major CF clinic at the University of Washington. I’ve been seen at the same CF clinic for the past 35 years. My GP consults with my primary CF doctor for my care. I could not have a better situation and I’m very thankful for that.
I have been in a hospital where they had no idea what was wrong with me. while in the depths of a full on CF crisis (before diagnosis) a nurse in Germany even suggested that, since I had been living in Africa, I might have AIDS. I replied that was not possible unless there was a new way to contact AIDS.
I am militant now with regard to my regular medical care. I apply the same technique that I use for the CF side. Educate and advocate. My theory is that the loudest voice usually gets the attention because it is so annoying 🙂 In these situations, I may not be particularly liked but I am listened to…
June 19, 2021 at 11:10 am #17072
CF is such a broad spectrum. I believe it has a massive footprint that that is still relatively unknown. I’m lucky, it mostly impacts my lungs. I seem relatively OK with the rest of my organs. In fact, I’m pretty much a healthy person outside the FEV issue.
I come from a large family. I have 6 siblings and I am the only child with known active CF. I was not diagnosed with CF until I was in my late-30s. Over the previous 7 years before my diagnosis, I had lived and worked in the following cities/countries: Mexico City, Mexico (3 years), Beijing, China (2 years), Khartoum, Sudan (1.5 years). The common denominator for these countries is they all have horrible air quality/pollution.
Mexico City is in the belly of an extinct volcano crater. A constant pressure layer pushes everything to the ground. The smog (mostly automobile exhaust and some industrial pollution), airborne dust, and airborne fecal matter (sorry to be gross) was so bad we could not see the sun until we drove out of the crater. Then, it was brilliant sunshine and crystal blue sky.
Beijing was a city shrouded in exhaust fumes and other air pollutants. Remember the Olympics? Burning soft coal was persistent during the winter/fall and particulate matter was pervasive in the air. It was in Beijing that I first started to experience minor and sporadic bleeding. I just thought it was sinus or something like that. I also started to notice a slight oxygen deprivation sensation (something very new and mysterious to me at the time).
Khartoum is in the heart of the sub-Saharan desert and often experiences massive “haboobs” or dust storms that literally turned day to night. Breathing in this cloud of sand was like taking sandpaper to my lungs. In fact, it was in Khartoum that I fell off the edge and plunged into massive hemoptysis for the first time. Raging fever, precipitous loss of weight, and massive bleeding. It was so bad I was air evacuated to Germany for intensive care. I was dying. My parents flew from Alaska to say good-by. The upper-right lobe of my lung had a massive hole and blood was pouring out of it. They thought it might be TB and gave me all the synthetic antibiotics available. Fortunately, one of these antibiotics was Cipro. It literally saved my life.
It was only after I stabilized from this crisis and, 2 years later, started to experience the same symptoms that they look deeper and discovered I had CF.
I strongly feel that, had I not lived in these 3 cities, I might quite possibly STILL not know I have CF. I wonder how many people there are out there like me. They live in clean environments. They don’t subject their lungs to a massive assault year in and year out. They live unknowingly with CF…
June 19, 2021 at 10:26 am #17071
When I need to destress, I almost exclusively go to soothing sound tracks on my Pandora app. I especially love Budda Bar, Karunesh Radio, Pat Metheny Group, Liquid Mind, Anugama Radio, Global Chill Radio (the list goes on but I’ll stop).
May 31, 2021 at 7:43 pm #16942
The looks I used to get during my CF clinic visits when I wore my N95 mask. The freight I used to sense from the general public when I wore that mask outside the clinic.
Post-covid it’s a different story.
I’m comfortable with social distancing and mask wearing. I’ve practiced this as much as possible for many years. Covid just legitimized an existing desire to protect myself from the greater human environment and still live in the world. When Covid broke I wore the mask to protect myself and to protect others from my potentiality. For an entire year, whenever possible, I stayed home. I wore a mask and was considered either brilliant or inane by the world at large. But I was NOT looked at as a menace to society. It was Covid we were talking about not some hidden disease.
Fortunately, my partner and children have all been vaccinated. My grandchildren (all under 8 years old) practice social distancing and they wear a mask in public whenever indoors. This is their culture now. In response to Covid, we controlled our little world with a family agreement. Because of this, we feel relatively safe when we are together. We will continue this way to a great extent until we feel society has reach an acceptable level of risk.
Lest you think I’m some sort of introvert let me put that to rest. I’m as outgoing as the next person. I can speak in public with ease. I like to express my opinions (for what they are worth). I don’t mind being a little showy.
Social distance and wearing a mask have nothing to with my social self. This is my desire to control the air I breath and the environment I live in, and I don’t intend to change. For the uncontrolled environment I’ll follow these rules: indoors — mask up and keep my distance; and, outdoors, watch the environment and if it gets too uncomfortable, well, on will go the mask.
I do have to stop confronting the unmasked and unvaccinated. It is a waste of time and energy. Their empty arguments have already been dropped in my discard pile. You are what you choose. Your judgment is rendered by your action. You are a threat to others but by adopting my strategy you are not a threat to me. You care only for yourself. You have no sense of a greater human good. I have already written most of you off to the dregs of the human condition. Harsh but if it fits wear it.
Social distancing and masks and vaccines are not novel to those us who live with CF. This has been the most non-lethal flu season we have seen in a long while. It is no mystery. Wash your hands often (even though that is not so much a Covid thing), keep your distance, wear a mask in confined spaces. It all adds up to better health and a safer environment for those of us to live with CF.
May 17, 2021 at 3:50 pm #16641
I know the dilemma. Just title this little ditty “Achilles meets Icarus”.
My way of coping with the realities of CF in the workplace 26 years ago was to start my own business with the aim to create a more user-friendly work environment. I determined to be overt with all aspects of CF. As I hired employees, part of my interview process was “the CF talk”. I assured them my frequent huffing, puffing, and sputum production was not contagious. If that was problematic, I assured them another job opportunity existed somewhere else. It is normal for my employees to observe me at the office with a Tobi bomb tucked into my shirt pocket and a PICC line in my arm. If they are uncomfortable with CF, they hide it well. I do my best to control this environment.
The downside of this arrangement is (pause for the obvious) I own a company…it is a 24/7 thing.
True to my OCD personality (hello Achilles), I grew the company significantly in the first 10 years (good day to you, Icarus). We had offices all over the US and Canada and I had to keep up with them. I experienced too much air travel (a real challenge because it is pretty much impossible to normalize huffing, puffing and sputum with strangers on a plane), too much time in major cities with air quality issues, and I missed too many treatments due to the travel and meetings. As the company grew, I found myself failing physically. The company was successful, but I was not.
One day I found myself in the emergency room due to a serious episode of hemoptysis (can you relate?). I was hooked up to all the usual medical devices. At the same time, I was constantly on the phone dealing with several pressing company issues. I was still coughing frank blood, I had an elevated fever, and sweat on my brow. I felt that familiar mental shift to a cloud. Not totally sharp. The IV kept getting in the way of the laptop. The nurses kept interrupting my phone calls. At the end of the day and after a “come to Jesus” conversation with my partner, Sandi, I finally admitted this was not sustainable.
Upon arriving back home, I was reminded of the biblical discussion. “What does it profit a person if he/she gains the world but loses his/her soul”. (I know, that sounds extreme, but I was raised to be an extremist…). I considered the present situation (stress, lack of solid sleep, physical exhaustion, untreated infection due to inadequate preventative measures) with the desire for quality of life (longevity, growing older with my partner, potentially living to see grandchildren, etc). I also considered ego and the need to excel in everything regardless of consequence (though that tendency had served me well in some areas it had been utterly destructive in others). Ultimatly, I reached the obvious conclusion. I needed to reorganize my priorities–again.
As mentioned above, I tend to extreme. As such, over the ensuing 6 months, I shut down all non-Seattle offices. I made it a point to prioritize my treatment routine. I substituted a 12-hour work day with 8 hour days. I targeted 10 hours sleep rather than 6. I stopped working on the weekend. And yes, the growth of my company was compromised because life is always a trade-off. However, I was still successful enough to raise the kids and live a good life and experience 4 grandchildren and enjoy have a loving relationship with my dream woman.
By abandoning the race to the top, I was able to enjoy the priorities of my life. One of the best decisions I’ve made.
April 27, 2021 at 2:21 pm #16555
Thank you for your kind commments.
April 25, 2021 at 12:41 pm #16546
This morning, like every morning, I was awakened by the stiletto paws of our cat Jaxx. He is a big boy, so when he stands on my stomach and speaks with his “feed me Seymour” meow, he cannot be ignored. Next to Jaxx is his sidekick, Marvin. Marv is also a big boy. However, his morning technique is to wail like a banshee while gently touching my exposed arm with just the hint of a paw/claw.
I love these guys but when these two guys start their tag team action, it is time to rise and shine…ready or not.
April 25, 2021 at 11:49 am #16545
Spirit animals are integral to my personal view of the world. Many people may write this off as fantastical and, possibly, delusional thinking. And they might be right. But, for me, the natural world and the spiritual world have merged into one world since childhood.
I believe that I do not have a specific spirit animal. However, I know that I have communed with many animals over the years. I remember the owl that landed on the spruce bow outside my bedroom window and shared several minutes with me during a very trying time in my life. I remember the deer I stalked in the forest as a young man who locked eyes with me in a silent moment of decision…and I did not shoot. I remember the hummingbird that hovered 6 inches from my face for a full minute looking into my eyes (hummingbirds are especially prone to do this). As a 14-year-old, I remember the black bear that I met on the bend of a trail. 3 feet apart, I took in his rank odor and I could hear him breathing deeply and tasting the air searching for my scent. In silence, we stared into each other’s eyes (not a recommended thing to do with another carnivore in most cases). After several minutes he had enough and lumbered into the forest. I remained standing, somehow a little different for the encounter. These are a few examples from my lifetime (and I do have more examples). These exchanges between the animal world and the human world are the closest I have come to meeting a spirit animal. I was nourished by each encounter even though I could not articulate to you one conscious thought from the exchange. I came away from those encounters feeling serene and peaceful and, I believe, more fulfilled as a member of the natural world.
I was raised in an extremely “spiritual” family (in the religious sense of the word). My father, who passed a few years back, was a Pentecostal preacher. He was also a logger (that is how he paid for his preacher lifestyle). He was an outdoorsman (that was one of the ways he fed his family). Certainly, he was not a mega-church pastor. My father loved the natural world. He could name the various flora and fauna as we hiked through the forest. He could identify the bird chirping unseen in the trees above. He knew the habits of deer, mountain goat, bear, and wolf. My father never entered the forest or hiked a mountain without marveling at the grandeur of God’s creation. I followed my father like a faithful disciple, and I soaked up his knowledge and lore. In turn, I too became a proficient outdoorsman. My faith and the natural world were inextricably intertwined. I could not say where one ends and the other begins.
Despite his influence on my development as a child, my father and I always parted ways vis-a-vis the relationship between the natural world and humankind. He believed that we were charged by God to care for the earth and earth’s creatures. The natural world, in turn, existed to serve mankind. He measured his physical life by his ability to dominate the natural world and mold its development.
Conversely, I believed that the Creator placed man on this earth to co-exist with nature and to live in harmony with the greater environment. In my opinion, mankind broke from that design and the world we know evolved away from harmony. I felt (and feel) that human beings need to find a pathway back to harmony and co-existence with the natural world. In so doing we find our true purpose. I became less of a religious person and more of a transcendentalist.
Again, I know this sounds lofty, esoteric, and simplistic. This world is universally harsh and seemingly callous to the suffering of its inhabitants. I have witnessed this suffering firsthand during my years in the developing world as well as here in my own country. We see so much strife and so much heartache. It almost seems too much to bear. We feel the pull of despair. But in these times of darkness, I think we need to look for the light. It exists everywhere. Kindness, self-sacrifice, generosity, benevolence – these too are traits of humankind. I believe our encounters with animals can be spiritual. It can help elevate our perceptions so that we see what is peaceful and serene in midst of our chaos, strife, and suffering.
April 21, 2021 at 9:58 am #16533
Snow and mountains, or sand and sun… Fact is, I must have it all.
I spent my childhood on a small island in SE Alaska on the edge of The Misty Fjords. Pacific Ocean on one side, mountains rising in the back yard. Salmon, eagle, bear, raven, deer, ptarmigan, ancient cedars, towering sitka spruce, moss, muskeg…this was my playground. However, I wanted to see the outside world so in 1976 I left my home and enrolled at university in Seattle.
After university, I worked as a U.S. diplomat living and working in foreign countries. I was intrigued by the developing world and those were the countries I chose to work in. Unfortunately, they were also extremely polluted environments (airborne soft coal/dust storms/fecal matter/etc) and this had a dibilitating impact on my lung quality.
At 33, I was medivaced from north africa with what was assumed to be be severe tuberculosis. Massive hemoptosis, raging fever, freightening weight loss. Although unable to culture TB because all I produced was blood, I managed to survived that situation with the serendipitous intervention of cipro (one of the 4 meds I was given for the suspected TB infection). My second medivac was 3 years later from Nicaragua. Same symptoms. Upon arrival at Walter Reed Medical Center it was pretty obvious that TB was not the problem. Thereafter, a long shot sweat chloride test confirmed that my issues were, in fact, CF related…my foreign service career was over.
Time to forge a new path. Alaska was out because I needed a CF center nearby. So, I looked at all the options and chose Seattle. It has been my home since. Why?
Every day I breath the cleansing air of the vibrant puget sound. Across the sound I waits the Olympic rain forest and her snow capped mountaintops. To the north of this temperate rain forest awaits the tangle of the San Juan Islands. To the south I see the magestic Mount Rainier. To the north rises her snow capped sister Mount Baker. 45 miles to the east I am embraced by the Cascade mountains. Over those mountain passes I drop into the high desert sage and sand of Eastern Washington.
Drive 1 hour in any direction and I commune with one of the many forms of mother earth. And my soul and spirit are nourished by her. I live the moments of my life here. The past informs me but the present sustains me. The future? Well, why worry when you can be happy.
The ramblings of a 65 year old CFer.
March 17, 2021 at 3:36 pm #16403
Pre-CF diagnosis, I always believed that I alone controlled my destiny. Fate was just the consequence of my choices. This belief allowed me to function in high stress envronments and, for the most part, it held true. I also believed that a nuclear bomb could go off and I would emerge, shiney and new, from the dust cloud. Alive and well. Ironically, this notion was brutally proven to be untrue (to my great surprise) in Kharoum Sudan (of all places). 1 mile from the longest river in Africa…
The inability to control my world caused me to lose control of myself. I spent several months in Ward 52 at Walter Reed Medical because CF took all control of my world and smashed my illusions. I lost emotional control and I was devestated. It was an epic nightmare.
With help from an emotional coach and Xanex, I was able to reconcile my world one piece at a time. Ultimately, I was able to move forward with a new paradigm.
I have lived since with a simple mantra to do my best and rest in the result. Sometimes the result is a victory whereby I not only rest but revel. Often it is a loss whereby I mope a little and make those around me feel a little uncomfortable. With either case, I try not to linger too long in that moment. But I do allow myself to linger. Then I get back to doing my best.
It seems like such a simple thing. But it took the long arm of CF to bring me to this truth.