However, this is not my story. This is our story, because I've never been alone in this tale.
This is the story of how God has wrecked and rebuilt the lives of my mom, my wife, and myself through PCD.
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| This story wouldn't be complete without these two by my side. |
The beginning of our journey with PCD was rough, as it is with most people. Thankfully, I received my diagnosis around age seven or eight, but that was not until my family and I had already experienced immense pain. My mom, Brenda Grow, had this to say about my life, pre-PCD: “At 6 months of age Adrian started throwing up his milk and arching his back. We took him to the doctor and ended up he had spinal meningitis… They proceeded to do x-rays then and realized all of his organs were reversed! What a tailspin! Literally!”
At such a young age, PCD was nearly impossible to diagnose. However, the telltale sign of situs inversus (total organ reversal) was present, as well as hydrocephalus (“water on the brain”), a disease that may be connected in some ways to PCD – research is unclear about it at this point. It was not until I was older, around kindergarten-aged that my mom started to notice other odd symptoms. “Many mornings, we would be standing together at the bus stop and Adrian would cough until he eventually threw up mucus. After throwing up this conglomerate of yellowish-brownish goo he felt much better… this was a great cause for concern.” As a child, I personally knew something was different. I felt like I had what other kids called asthma, but mine seemed a lot worse, and I had a lot more doctors and medicines than the rest of the asthmatic kids.
Our road to diagnosis was long and difficult. Through infant spinal meningitis and my morning cough-fests, something was not right. According to my mom, our family doctor agreed, and began by running allergy tests on me. Upon discovering my allergy to mold spores, my doctor referred us to a pediatric pulmonologist, who he said would then narrow down the problem to something more specific. This led to an original (and typical) misdiagnosis of asthma. However, we could not quite get things under control, like most asthmatics could. We continued testing, including sweat chloride tests for CF, but nothing was returning positive. Somehow, someway, my doctor stumbled upon my original diagnosis of immotile cilia syndrome, which we now know to be a misnomer for PCD. And though we now know this mystery illness’ name, it still is shrouded in confusion. My wife of 3 years, Kalyn Waller, gave us these insightful words: “The journey for diagnosis seems to still be going on. Although he got diagnosed as a kid, before I ever knew him, it seems like all of us, including the doctors, are still figuring out what’s really wrong with him and the effects it has on him and his life.”
Originally, finding a doctor was not difficult. The first referral our family physician gave us was golden. My pediatric pulmonologist was a determined woman, and she would not give up on me, regardless of how sick I got. She tried every trick in her book, including keeping me under her watch until the day I turned 19, a year later than typically permitted. However, since then, doctors have been a dime a dozen. Kalyn puts it well: “It’s difficult to find a doctor; it’s even more difficult to keep one. They only have so many ideas and so it seems in order to stay healthy you have to figure out when you’ve used up all of their ideas and move on to someone else.”
Since my diagnosis, I have “used up” several doctors and their ideas. When I turned 19, I was transferred to an adult pulmonologist. He seemed smart, but he did little to nothing to care for me – no antibiotic regimens, nothing. After half a year, I lost my insurance because I got married – the new health care laws had not taken effect yet. It was all downhill from there. I only saw him a few more times, when I was willing to shell out the $300+ for an appointment, where he would literally tell me: “I’m not sure, maybe you should go to Canada.” No joke.
At the time, I did not mind his unhelpfulness. I did not know that PCD required such active care, and in my teen years, my lungs worked pretty well – I was able to exercise vigorously and play sports as I wished. Someone told me around this time I should try applying for disability. I did and was denied, and thought nothing of it – I could still do anything I needed to.
It was not until a few years into college that I had hit my breaking point. I could no longer carry my backpack without having to sit and wheeze and cough for 5 minutes afterward. I could barely climb stairs, and I was no longer able to play sports with my friends – our main method of socialization. I was an 85 year old trapped in a 21 year old’s body.
Thankfully, my in-laws were introduced to a doctor in town who was new and practicing what he described as “concierge” medicine. For a monthly fee, he was available 24/7 to his patients. It sounded like it was worth a shot, so we called him up and set up and appointment. During this time, I finally decided to re-apply for disability – I figured I had a shot since I could barely walk.
After meeting with this new doctor, a family physician, he had a lot of great ideas that I had not heard before. He was able to consult with a pulmonologist to fill in the gaps in his knowledge, and he helped me to secure my first inhaled antibiotic treatment – nobody had EVER told me that it existed. He also told me I should be sleeping with oxygen – the difference was night and day after that! No more debilitating headaches after waking up!
Eventually, I was approved for disability insurance and was able to go through 3 weeks of IV antibiotics immediately following a month of TOBI. This really kicked the crap out of my infection, and set me on the course I am on today. After getting insurance, I stopped seeing my concierge doctor – he had exhausted his ideas for me. However, he encouraged me to seek out the pulmonologist he had previously consulted with to become my primary caretaker for my lungs.
Since then, I have seen my current pulmonologist three or 4 times. We have been on a quest to help me gain weight – I used to weigh 110 lbs (and at 5’8”, that is nothing!) and now I weigh 140 lbs. It has really helped my body to utilize oxygen better as I have gained more muscle over these recent months. I recently ran for the first time since early college/high school – that was quite a milestone for me, even if it was just for a minute. But as I am seeing, fighting PCD is all about baby steps. After all, taking baby steps over a lifetime can lead to a huge change.
Living with a chronic illness is not for everyone. It takes a toll on a patient’s life, as well as on the lives of those around him. When asked about the impact of PCD on her own life, my mom expressed feelings of overwhelming fear, especially of the unknown. “The impact of the diagnosis for me at first was overwhelming in that I wasn’t aware of the extent of danger this diagnosis was and didn’t know enough to be either scared or leery.”
Meanwhile, PCD has affected my wife personally as well. She says, “PCD takes up a lot of time. I have to take over doing things that he normally does when he is not feeling well. It makes it difficult for me to be tired or sick when he’s not feeling well.”
These are situations which doctors are often unprepared to address. It may be routine to address fears of a patient, but a patient’s family experiences many of the same fears, in addition to other feelings of helplessness and desperation. Personally, the biggest impact PCD ever had on my life was during my freshman year of college. I moved away for school and was living in the dorms. It was incredibly difficult to keep up my medical regimen during this time. Whenever I was awake, I was either at school, doing homework, eating, or hanging out with people. I did not want to be stuck doing the VEST while others were having fun, especially if others were around. It was embarrassing and difficult to have to explain to every single person who walked by my dorm room why I had so many machines and why I had to use them so often.
Now, more than ever, PCD seems to wreak havoc on my personal life. Many of my friends socialize by playing sports or going on adventures – many of which I am unable to participate in. I am an adventurer at heart. I love doing things – physical things. I always want to be doing something, but that has really changed these last few years. Now, I am too tired to move at some points in the day. Luckily, I have picked up other sedentary interests, such as blogging, reading, and playing video games. However, it really stinks that I cannot be outgoing and adventurous on a whim, like I truly want to.
On a more personal level, PCD has also affected the way we are choosing to start our family. We are planning on adopting and possibly becoming foster parents in the near future. However, my wife and I both are concerned that agencies might reject us outright because of my condition. I want nothing more than to care for children who need a home and someone to love them; it would be devastating to discover that PCD might take this dream from us.
The future for my life, especially concerning PCD, is both scary and exciting. My mom and wife echo these sentiments as well. My wife expresses a few desires: “I’d like to be able to more clearly understand what’s going on. I’d also like for more treatments to be available so he can stay healthy and live as normal of a life as possible.”
My mom’s concerns are very similar. “The biggest fear for my child of course, is his own life. My hope for Adrian is that he will live a normal life span. The reality of the PCD’s impact on him cannot be minimized; hence why I cannot say ‘healthy’ life span along with normal. . My hope is that he is able to get the treatment as needed and if at some point in time he may need a transplant, then my hope of course is that he is able to do that.”
Personally, I am not sure what to make of the future. My biggest fear is leaving my wife too soon. I know she knows what she signed up for when we got married, but it has all happened so much more quickly than either of us thought it would. It is terrifying to think there is a possibility that my life might be shortened, but I am optimistic; I think I will live a full, lovely life. But that does not mean the fear does not creep up from time to time.
Eventually, I would like to find more therapies and/or treatments to help manage my health. I would also like to find some sort of exercise regimen suited to my particular strengths and weaknesses, one supported by research to help maintain lung function and capacity. Ultimately, I hope that eventually, whenever I do get a lung transplant, I might be able to breathe again. But more importantly, I hope that I will live as long as possible, without complications, transplant or not. The future for us is intimidating, but not nearly as intimidating as what we have already overcome together.
At such a young age, PCD was nearly impossible to diagnose. However, the telltale sign of situs inversus (total organ reversal) was present, as well as hydrocephalus (“water on the brain”), a disease that may be connected in some ways to PCD – research is unclear about it at this point. It was not until I was older, around kindergarten-aged that my mom started to notice other odd symptoms. “Many mornings, we would be standing together at the bus stop and Adrian would cough until he eventually threw up mucus. After throwing up this conglomerate of yellowish-brownish goo he felt much better… this was a great cause for concern.” As a child, I personally knew something was different. I felt like I had what other kids called asthma, but mine seemed a lot worse, and I had a lot more doctors and medicines than the rest of the asthmatic kids.
Our road to diagnosis was long and difficult. Through infant spinal meningitis and my morning cough-fests, something was not right. According to my mom, our family doctor agreed, and began by running allergy tests on me. Upon discovering my allergy to mold spores, my doctor referred us to a pediatric pulmonologist, who he said would then narrow down the problem to something more specific. This led to an original (and typical) misdiagnosis of asthma. However, we could not quite get things under control, like most asthmatics could. We continued testing, including sweat chloride tests for CF, but nothing was returning positive. Somehow, someway, my doctor stumbled upon my original diagnosis of immotile cilia syndrome, which we now know to be a misnomer for PCD. And though we now know this mystery illness’ name, it still is shrouded in confusion. My wife of 3 years, Kalyn Waller, gave us these insightful words: “The journey for diagnosis seems to still be going on. Although he got diagnosed as a kid, before I ever knew him, it seems like all of us, including the doctors, are still figuring out what’s really wrong with him and the effects it has on him and his life.”
Originally, finding a doctor was not difficult. The first referral our family physician gave us was golden. My pediatric pulmonologist was a determined woman, and she would not give up on me, regardless of how sick I got. She tried every trick in her book, including keeping me under her watch until the day I turned 19, a year later than typically permitted. However, since then, doctors have been a dime a dozen. Kalyn puts it well: “It’s difficult to find a doctor; it’s even more difficult to keep one. They only have so many ideas and so it seems in order to stay healthy you have to figure out when you’ve used up all of their ideas and move on to someone else.”
Since my diagnosis, I have “used up” several doctors and their ideas. When I turned 19, I was transferred to an adult pulmonologist. He seemed smart, but he did little to nothing to care for me – no antibiotic regimens, nothing. After half a year, I lost my insurance because I got married – the new health care laws had not taken effect yet. It was all downhill from there. I only saw him a few more times, when I was willing to shell out the $300+ for an appointment, where he would literally tell me: “I’m not sure, maybe you should go to Canada.” No joke.
At the time, I did not mind his unhelpfulness. I did not know that PCD required such active care, and in my teen years, my lungs worked pretty well – I was able to exercise vigorously and play sports as I wished. Someone told me around this time I should try applying for disability. I did and was denied, and thought nothing of it – I could still do anything I needed to.
It was not until a few years into college that I had hit my breaking point. I could no longer carry my backpack without having to sit and wheeze and cough for 5 minutes afterward. I could barely climb stairs, and I was no longer able to play sports with my friends – our main method of socialization. I was an 85 year old trapped in a 21 year old’s body.
Thankfully, my in-laws were introduced to a doctor in town who was new and practicing what he described as “concierge” medicine. For a monthly fee, he was available 24/7 to his patients. It sounded like it was worth a shot, so we called him up and set up and appointment. During this time, I finally decided to re-apply for disability – I figured I had a shot since I could barely walk.
After meeting with this new doctor, a family physician, he had a lot of great ideas that I had not heard before. He was able to consult with a pulmonologist to fill in the gaps in his knowledge, and he helped me to secure my first inhaled antibiotic treatment – nobody had EVER told me that it existed. He also told me I should be sleeping with oxygen – the difference was night and day after that! No more debilitating headaches after waking up!
Eventually, I was approved for disability insurance and was able to go through 3 weeks of IV antibiotics immediately following a month of TOBI. This really kicked the crap out of my infection, and set me on the course I am on today. After getting insurance, I stopped seeing my concierge doctor – he had exhausted his ideas for me. However, he encouraged me to seek out the pulmonologist he had previously consulted with to become my primary caretaker for my lungs.
Since then, I have seen my current pulmonologist three or 4 times. We have been on a quest to help me gain weight – I used to weigh 110 lbs (and at 5’8”, that is nothing!) and now I weigh 140 lbs. It has really helped my body to utilize oxygen better as I have gained more muscle over these recent months. I recently ran for the first time since early college/high school – that was quite a milestone for me, even if it was just for a minute. But as I am seeing, fighting PCD is all about baby steps. After all, taking baby steps over a lifetime can lead to a huge change.
Living with a chronic illness is not for everyone. It takes a toll on a patient’s life, as well as on the lives of those around him. When asked about the impact of PCD on her own life, my mom expressed feelings of overwhelming fear, especially of the unknown. “The impact of the diagnosis for me at first was overwhelming in that I wasn’t aware of the extent of danger this diagnosis was and didn’t know enough to be either scared or leery.”
Meanwhile, PCD has affected my wife personally as well. She says, “PCD takes up a lot of time. I have to take over doing things that he normally does when he is not feeling well. It makes it difficult for me to be tired or sick when he’s not feeling well.”
These are situations which doctors are often unprepared to address. It may be routine to address fears of a patient, but a patient’s family experiences many of the same fears, in addition to other feelings of helplessness and desperation. Personally, the biggest impact PCD ever had on my life was during my freshman year of college. I moved away for school and was living in the dorms. It was incredibly difficult to keep up my medical regimen during this time. Whenever I was awake, I was either at school, doing homework, eating, or hanging out with people. I did not want to be stuck doing the VEST while others were having fun, especially if others were around. It was embarrassing and difficult to have to explain to every single person who walked by my dorm room why I had so many machines and why I had to use them so often.
Now, more than ever, PCD seems to wreak havoc on my personal life. Many of my friends socialize by playing sports or going on adventures – many of which I am unable to participate in. I am an adventurer at heart. I love doing things – physical things. I always want to be doing something, but that has really changed these last few years. Now, I am too tired to move at some points in the day. Luckily, I have picked up other sedentary interests, such as blogging, reading, and playing video games. However, it really stinks that I cannot be outgoing and adventurous on a whim, like I truly want to.
On a more personal level, PCD has also affected the way we are choosing to start our family. We are planning on adopting and possibly becoming foster parents in the near future. However, my wife and I both are concerned that agencies might reject us outright because of my condition. I want nothing more than to care for children who need a home and someone to love them; it would be devastating to discover that PCD might take this dream from us.
The future for my life, especially concerning PCD, is both scary and exciting. My mom and wife echo these sentiments as well. My wife expresses a few desires: “I’d like to be able to more clearly understand what’s going on. I’d also like for more treatments to be available so he can stay healthy and live as normal of a life as possible.”
My mom’s concerns are very similar. “The biggest fear for my child of course, is his own life. My hope for Adrian is that he will live a normal life span. The reality of the PCD’s impact on him cannot be minimized; hence why I cannot say ‘healthy’ life span along with normal. . My hope is that he is able to get the treatment as needed and if at some point in time he may need a transplant, then my hope of course is that he is able to do that.”
Personally, I am not sure what to make of the future. My biggest fear is leaving my wife too soon. I know she knows what she signed up for when we got married, but it has all happened so much more quickly than either of us thought it would. It is terrifying to think there is a possibility that my life might be shortened, but I am optimistic; I think I will live a full, lovely life. But that does not mean the fear does not creep up from time to time.
Eventually, I would like to find more therapies and/or treatments to help manage my health. I would also like to find some sort of exercise regimen suited to my particular strengths and weaknesses, one supported by research to help maintain lung function and capacity. Ultimately, I hope that eventually, whenever I do get a lung transplant, I might be able to breathe again. But more importantly, I hope that I will live as long as possible, without complications, transplant or not. The future for us is intimidating, but not nearly as intimidating as what we have already overcome together.
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This story isn't exhaustive - there are several others who have joined us in this journey and who I wouldn't be here without.
Ultimately, it's important to realize that regardless of what narrative we're living, we're never living it alone.
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Questions: What narratives have defined your own life? Who has been by your side through your journey? How has it affected them?
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