Today (February 16th, 2018) marks two years since my surgery. My current goal is to try to qualify for the 2019 Boston Marathon. My first attempt will be in April 2018 and I need to run the 26.2 mile race in less than three hours and ten minutes. In some ways this should be way easier then completeing an Ironman, but the catch is the speed. The speed is which makes qualifing for Boston so difficult. My current fastest marathon is three hours and forty minutes so I still have a lot of work to do. I don't have as much time for social media as I once did, but my awareness efforts are still one of my top proirities. Two years ago I could barely walk, but today I am in the best shape of my life. I remain humbled, yet extremely focused and trying to enjoy my life to the fullest.
UPDATE: My attempt to qualify for the Boston Marathon did not go according to plan. The weather for the race was the worst I have ever seen. It was freezing rain and very windy, but I showed up ready for the fight. By mile 8 I knew something wasn't right with my left leg, but I was on pace to qualify at that point. My hands were completely numb from being wet and cold, but I kept pushing on. By mile 10 I had to stop and stretch my calf and then my pace started to drop. At mile 12 I stopped breifly at a porta potty just to get out of the wind for a second and to accept the fact that I was not qualifying today. I tried to carry on, but I was in pain, soaked, freezing and starting to walk. Around mile 13 I made it to a dry spot under a bridge and then I did something I never did before or since, I quit. It crushed my spririts to quit, but I wanted to live to race another day so that is what I had to do.
In late 2015 I remember tracking my step dad on the Ironman Louisville website. I went to work and followed him from the start. When I went to bed that night he was still running and I thought that man is crazy, but a good kind of crazy. Here I woke up, ate breakfast, went to work, ate lunch, drove home, ate dinner and he has been out there all day doing an Ironman. At that point I thought if I can survive this surgery I too will be an Ironman and maybe I could use it as a platform to help raise more awareness for pectus excavatum.
By the time I was a teenager I started to have fewer and fewer friends because of the shame I felt about my chest. I became the “weird” kid that didn’t really talk to anyone. The few friends I did have either had no clue about my chest or didn’t bring it up. I can’t even begin to say how hard gym class was for me physically. I was extremely skinning and couldn’t keep up with the other kids. When gym class went to the swimming pool I no longer had anywhere to hide my chest. The ridicule was intense and the stares I would get really hurt me emotionally. I wanted to cry, but I knew I would catch even more crap from the kids, so I just kept a blank face and soaked it all up like a sponge.
As of my one year post op date I have absolutely zero pain from my pectus or surgery. I can actually breathe and all my issues went away. I do not have any feeling in the center of my chest due to nerve damage, but Dr. Jaroszewski warned me of this before my surgery. Basically about an inch in from each nipple to the bottom of my sternum is completely numb. It took some getting used to, but I wouldn’t trade it to go back to the way that I was before.
This is me at 1 year old.
I only went to the doctor now for a yearly physical or when the pain became too intense and I had to tell my mom. The doctors I would see still had no advice for my sunken chest except to tell me that it was just cosmetic and there is nothing that they can do about it. I’m 6’ 4” now, but then I was still growing. I was told things like “the pain must be in your head” or it still could be “growing pains”. I didn’t realize it at the time, but I was beginning to become depressed. I graduated high school in 1999 and after that the amount of friends I had practically went to zero. I then chose not to continue my education and start working instead. School wasn’t kind to me, so I was ready to try being an adult. I met one person at work and we seemed to get along really well. We began dating and now she is my wife. It may sound stupid, but one of the hardest things I had to do was tell her about my chest. She didn’t care one bit, but I did. I don’t know if I didn’t really believe her or it was just all the years living with this condition and the way other people treated me once they found out about my chest.
My legs healed up quicker than I expected, so I tried to run again. One day I let slip that I started running and a few weeks later my mom signed me up for my first 10k (6.2 miles) race and I completed it even though I was incredibly slow and one of the last to finish. At that point I was hooked and I put myself on a training plan and I stuck to it. I managed to complete several more 10k's that year and I even did my first 1/2 marathon (13.1 miles). This new found information about Pectus Excavatum was driving me to do things I never thought possible. Breathing was still an issue, but it’s always been an issue. Some people asked me how I could run when my chest is pushing on my heart and lungs, but it’s all I ever knew so I just pushed myself until I felt like I would pass out. I was still ashamed about my pectus, but I really wanted to take part in the online support groups. I decided to make another Facebook profile called Pectus Excavatum William’s Journey and with it I could be somewhat anonymous. I learned about the Ravitch technique and the better corrective surgery called the Nuss procedure. The Nuss procedure involves having two holes drilled into the sternum and then attaching a bone clamp to it. The clamp is then attached to a pulling device also known as the RulTract which will help lift the sternum away from the heart and lungs for the first time. Next, three incisions are made on the sides of the chest. The first is for the camera and the next two are for the metal support bars. These bars are inserted upside down in a "u" shape and then flipped and secured to the rib cage with fiber wire. The bars are usually removed three years later after bracing the chest wall.
Now I will take a short break and do some more thank yous. Dr. Jaroszewski, Kelly Myers, Marianne, Lori, everyone else on the pectus team and Lora from AllAboutPectus for coming to the hospital to fit me for my brace, THANK YOU!!!!! Chuck I want to thank you for the snacks and balloon that I woke up to coming out of surgery. I also want to thank my Aunt Denise, Brooke and Courtney for visiting with us and feeding us and I apologize for not being able to travel to Tucson. Even more thanks go out to Karen and her family for the snacks and visiting us at our hotel. Finally, thank you to the people that wanted to visit me in Phoenix, but couldn’t make it and I hope we can visit next time. OK, back to the story.
I made it down to 185 pounds and tried to lose a full 100, but as I continued to replace fat with muscle I never had a chance at hitting that number. When I went back to my primary doctor for my follow up x rays I hadn't been there in almost a year because I was seeing specialists during that time. At that appointment the doctor's assistant had me get on the scale and then walked me into the exam room. She then glanced at her clipboard then asked “how much did that scale say you weighed again?”. I told her and she said something like “how did you lose all that weight?”. I then told her I completely changed my diet and started working out and she just said “oh, great job”. I’m guessing she wanted a “magic pill” answer or something. I also carry my photo album everywhere I go now because so many people do not understand what pectus is. My doctor marched me around the office showing everyone my before pictures compared to how I looked now and they were all amazed. I’m now simply known as “Pectus” at my doctor’s office. Several of my family members go to the same office and my sister told me that she wore a pectus awareness shirt there one day. She was asked how she knows about pectus excavatum and my sister mentioned me. They said “oh, so you know Pectus?” referring to me. I got a kick out of that.
I mentioned earlier about wanting to be an Ironman. I want to be the first person that I am aware of to complete an Ironman competition with titanium bars in their chest. An Ironman is a timed competition that involves swimming 2.4 miles then transitioning into a 112 mile bike course which then also transitions into a 26.2 mile marathon run. Each leg of the race has a strict time cut off and overall needs to be completed in under 16 hours. Starting in May 2016 I put myself on a six day a week training plan. I have been sticking with it and getting faster and stronger than I ever could have imagined. There was one little problem though. I didn’t know how to swim. So I would watch YouTube videos and then try what I saw. I did this over and over and over again until I did something that resembled swimming.
I spoke earlier about some of the depression and suicidal thoughts I had throughout the years, but I need to talk about it one last time. I feel that it is important to put myself out there and tell the truth because I may just be able to save someone’s life that feels the same way. I now had a second chance at life by having this surgery and physically I was getting stronger and stronger each day. There was just something I could not shake off. I decided to sign myself up to go see a psychologist and work through some of my feelings. I spoke a little about these feelings in a few of my YouTube videos, but I would just start to cry randomly at the drop of a dime. I’m not looking for anyone to feel sorry for me and I feel stupid even writing all of this, but this is how I felt. In the months after my surgery, everyday driving to work at 5AM in the dark all alone on the freeway I often times thought about just driving into something at full speed and ending it all. I would then cry because it wouldn’t be fair to my wife and anyone else that cared about me. I no longer could blame the medications for messing with my mind because I wasn't taking them anymore. After weeks and weeks of therapy sessions I was told that I suffer from a mild form of PTSD. Now, again I feel stupid even saying that because there are soldiers that fight for this country that suffer from these things. I didn’t fight in a war, I just went through a surgery for my pectus. I couldn’t change the way I felt, but I could try to refocus my sadness into trying to help others and raising awareness. So that is what I do every single day. I do wonder if I am annoying people with my “positive” posts on Facebook, because that stuff used to annoy me. Trying to stay positive keeps me positive and it’s something I need to do. I also wonder how many people will actually read my story all the way through. If you do read it please let me know. I know that I may never truly beat depression, but I can now recognize my feelings and talk about them. If you feel are feeling down in any way I also encourage you to openly talk about your feelings instead of keeping them bottled inside.
My good cycling friend started up a GoFundMe page and through many donations my bike and helmet was replaced. I now joke that I'm paying for a destroyed bike on a credit card, but I have a brand new working one for free. Looking back I believe I probably should have died that day, but my mission here isn't done. I have three big races this year and my training is better than ever. I will be competing in and raising awareness for Pectus at the Motor City Olympic Tri on June 25th in Detroit, Steelhead 70.3 Ironman in Benton Harbor, MI and Louisville 140.6 Ironman on October 15th.
I still continue to do my YouTube updates when I have something important to speak about. I also try to stay current with the Facebook support groups whenever possible. I created PectusStrong.com to easily direct people to all of my videos, the information that I gather about pectus and ways I’m trying to help others. I also linked it to the best pectus sites I know and I will add to the list as I find them. I want to continue to tell my story and provide support to others with chest conditions. I want to try to give back to those that are struggling more than me. My sights are currently set on Ironman Louisville in October of 2017 and I hope to be able to use it as a platform to raise more awareness for pectus. In fact, this past Thanksgiving (2016) I ran the Turkey Trot in Detroit and managed to get on the news wearing my pectus awareness shirt and I was also briefly interviewed before the race about pectus. If you wish to see it they are in the video section on PectusStrong.com. I want to show what can be possible if you suffer from pectus and that it is possible to overcome any obstacle in life. I made awareness shirts to wear while I train and workout. I also made business cards with my website to pass out because people tend to struggle with the words pectus excavatum. I just genuinely want to help others in any way that I possibly can. My awareness efforts will not stop and have only just begun. In the past three years I have been inspired by so many people and now it is my turn to inspire someone else. Thank you for reading my story so far.
Now I was in my early twenties and I had the love of my life. Things were great, except that I was still in constant pain because of my chest and dealing with the daily shortness of breath and heart palpitations. Many times I felt like I was going to die from a heart attack, but it was just my heart beating rapidly from being squished inside. At this point I completely gave up on going to see a doctor. There have been many times in my life where I would try to workout and get into shape, but due to my physical and emotional issues with my chest I always gave up and quit. I was in love, but I was also still depressed. My wife accepted me, but I feared no one else would and I didn’t even know how to approach people anymore. Finally, I accepted the fact that I didn’t have any friends and I was content with just being with my wife.
I also traveled back to Phoenix for my one year check up in March of 2017 where everything could not have went better. I was honored to be interviewed and they did a story and video about me which I will link to below. I decided to do a 5k race while out there and they even filmed that. Spoiler alert, but I managed to place 1st in my age group. The Mayo Clinic's entire story about me is here http://bit.ly/mayostory
As a thirty year old I needed to go back to see a doctor for a mandatory physical. “Freaking out” is how I would describe my feeling about going to see a doctor for the first time in years. I always knew what was coming after they checked your blood pressure, ears, nose and throat. Time to take your shirt off and listen to your heart and lungs. Over the years of being in self exile I developed a nervous stutter and mumble when I was forced to interact with another person. I remember barely even being able to get my words out. I told the doctor that my chest was caved in and I just want to let you know so you are not startled. It didn’t seem to bother the doctor at all which was nice, but he said oh that’s just cosmetic and it's nothing to worry about. I told him how I was feeling and he put me on anti depression medication. I was only on that medication for several months and it really seemed to work at the time. I also didn’t like the way it made me feel so I was really giving it a good effort to try to feel better and think positive. I found comfort in food and alcohol, but what was good for my mind would wreak havoc on my body. My “good feelings” from the food and alcohol wouldn’t last and I slipped back into my depression. I won’t get into all the dark details, but I became suicidal. I didn’t like who I was or where I was going. I was having dark suicidal thoughts, rage and anger issues on a daily basis and couldn’t see any light at the end of my tunnel.
UPDATE: Later in 2017 I was so fortunate to be able to attend Dr. Jaroszewski’s TEDx talk in person and I would highly recommend that everyone please take the time to watch, share and “like” this important talk. I am also greatly honored to not only be mentioned, but have a few photos of me included in the video.
Since June of 2017 I was able to successfully complete the Olympic Tri, Ironman Steelhead 70.3 and Ironman Louisville 140.6 all while having three bars in my chest. Many of you already follow me on Facebook and know every detail of the races, but if you don't please feel free to "friend" me there and check them out.
This is me at 1 1/2 years old.
I switched doctors again, but this time it was just out of convenience and closer to home. I could barely walk because of all the pain in my legs. We went through all the basic stuff again and then I took my shirt off. My doctor said “my daughter has that”. “Has what?!” I questioned. “She has a chest like yours. You know what that is called right?” I was shocked! I had no clue what “it” was called. He told me my chest condition was called Pectus Excavatum, but not to worry because it is only cosmetic. I didn’t care that he said it was cosmetic, I’ve been told that my entire life. I now knew what “it” was called! He also told me that I was too big to be a runner. He said that I had two stress fractures in my legs and if I took it easy they should heal on their own. I couldn’t get home fast enough and I began searching that term “Pectus Excavatum”. I didn’t care about my legs anymore, “legs?” what legs?” It wasn’t long before I found some YouTube videos and then a Facebook support group for pectus. I don’t know why I never tried searching for information about my chest condition prior to that day, but I just didn’t.
8 years old & I'm not sure what I am doing :)
this is the final picture that I can find of me as a kid with my shirt off
This is me at 4 months old.
Monday the 22nd was the day I had to go back to the hospital to see Dr. J and officially be released to go home. Everything checked out great and just like after my consultation I had to go upstairs for more pictures. I was on a lot of pain medication so my memory about all of this is in pieces. What Dr. Jaroszewski did for me was truly life changing and I can’t recommend her, her pectus team and the Mayo Clinic enough. I wish I could remember everyone’s name on the pectus team and thank them individually, but I was on a lot of medication and I already have a bad memory on top of that.
My wife tells me that just over three hours later I was in my recovery room. My wife and mom were able to come in and see me for a few minutes, but I remember none of it. I woke up several hours after that and was being wheeled into my final room where I would stay for the next three days. I remember a crane like device picking me up out of one bed and gently placing me into the other. I was in a lot of pain, but Dr. J and her team are experts at pain management and quickly had it under control. The first day I was on morphine and then was switched to oral medication and the On-Q pain pump. A portable X-Ray machine was brought into my room, so we could see the placement of my bars. I could barely stand up at this point let alone walk. On day two I was up and walking around a little and even was able to go outside in a wheelchair. My pain may have spiked at about a five or six out of ten, but with the push of a button someone was there to alleviate it. The Mayo Clinic is just plain awesome and I always brag about their cafeteria. Yes, cafeteria! It was unlike any other hospitals cafeteria that I have been in. The selection was vast and the prices were cheap. My wife would go downstairs everyday to get me an ice cream to help soothe my throat. I had a breathing tube placed down my throat and my lungs collapsed momentarily so the bars could be placed. Anyway, one of the hardest times in the hospital for me was when my wife went to the cafeteria and I needed to use the restroom. I could have called for help, but I thought how hard could this be. I managed to get to the bathroom, but I physically couldn’t get up from the toilet. I could hear the doctor enter my room looking for me, but I couldn’t get up and could barely yell out because my throat was so sore. I just starting crying and felt so helpless. I used every last bit of energy and as much leverage as possible to get up on my feet and back into bed. On the final day I was fitted for a rib flare brace checked out of the hospital.
My wife, mom and step dad flew to Phoenix with me for my pectus operation. Once I was out of surgery my mom and step dad flew home, but my wife and I needed to stay a week due to the seriousness of the operation. The plan was to drive to Tucson to stay with my aunt and uncle after we left the hospital. All of my ribs, muscles and sternum were shifted, I had three brand new titanium bars implanted inside, I could barely stand up and I was in excruciating pain. When my wife started to drive me away from the hospital I just sobbed and cried out due to the pain. She knew that there would be no way for me to make the two hour car ride, so she called my mom for advice. They immediately booked and paid for a local hotel which we stayed at for the next week. They also refused to take one penny for the room and I am forever grateful for that.
From what I remember the next three weeks at home were pretty rough, but each day was a little better than the previous. If it wasn’t for my wife taking such good care of me there would have been no way I would have made it through my recovery. When my wife had to go back to work my sister and nephew would come check on me and bring me lunch. I wasn’t allowed to lift more than five pounds for the first six weeks, but I was told that I can and should walk as much as possible. So in my head that means “hey go run a 5k”. Nineteen days after my surgery I pushed my nephew in his stroller and completed a 5k by walking most of it. The next day I was in tons of pain, so listen to your doctor and do not do a 5k after a major surgery. During this time I felt and heard a lot of “cracking” noises in my chest. I’m guessing everything was just settling in place. It was happening so much that I nick-named my three bars Snap, Crackle and Pop as a joke to myself. I weaned myself off of all the medications in about four weeks and I started to see my life differently. I started to see all LIFE differently.
I always knew that I was different. I was the kid with the caved in chest. It was probably around the time I started attending school that I became ashamed of my chest and little did I know then, but my entire life would be altered because of it. I had friends and family at this young age that were loving and kind to me, but I also had kids make fun of me because of my chest. I was a kid and what did I know. I recall hearing these words more than once “It's all harmless fun” and “just kids being kids”. For years I would never take my shirt off. Somehow I thought if I kept my shirt on people would just forget about it and stop teasing me. I remember complaining about having chest and back pains at an early age. I can also remember being in a hospital having an ultrasound and then being told that I have a heart murmur. Surgery was discussed with my parents and later dismissed because my chest was “just cosmetic”. This decision to not have surgery as a child just may have saved my life. Every doctor that I would go to would say “you're not in any pain” or “you're just having growing pains”. If I had surgery for my chest in the 1980's, the Ravitch technique would have been used.
My aunt, uncle and mom decided to host a benefit dinner to help me out with all the medical bills from the tests, and the upcoming trip to Phoenix for my consultation. So many people came to support me from my family, friends and coworkers and I appreciated it so much! My dad organized a 50/50 raffle to help raise even more money. In total, we raised enough money to get my wife and I to Phoenix for my consultation and help chip away at some of my medical bills. I want to thank everyone that made it out and donated money and to those that couldn’t make it but still sent their love, support and donations. My consultation was scheduled for December 8th, 2015 and it came before I knew it. I was so relieved to finally be able to meet Dr. Jaroszewski and Kelly Myers. I’m always pretty hard on myself with social interactions because even to this day I struggle with speaking clearly in public and knowing exactly what to say. Luckily my wife was there to help me get through it. That day I met Dr. Jaroszewski, Kelly Myers, Marianne and Lori and they were so knowledgeable and kind and made me feel comfortable in a way I never felt before. Dr. J and her team quickly answered every question and calmed every nerve that I had. After we finished speaking I had to go up stairs to have pictures taken of my chest. This experience was a little weird for me because I still was not used to taking my shirt off. The room was set up like a fashion shoot, but the person taking my pictures was so nice and made me feel relaxed. Just like that it was over and we were headed back home to Michigan.
After much reading and research I knew surgery could give me the life I’ve never had. If I was really going to go down this road to surgery I wanted to document it and maybe help someone else out one day. I spoke about some of the anxiety and issues I had with my chest, so getting in front of the camera would be very rough for me. In March of 2015 I was ready to finally reveal to my family, friends and the world that I had Pectus Excavatum. I wrote a long Facebook post about my Pectus and then I posted it to my personal page. I was really scared of what everyone would say and how they would treat me. Would anyone even care or would they just ignore me? I decided to stay away from Facebook and turned my phone off for the rest of that day. When I gathered up to the courage to check the status of my post I was bombarded by dozens and dozens of comments and “likes”. I was not used to this kind of attention and support and I started to cry like a baby. Soon after I began to film myself speaking about my pectus and then upload it to my YouTube channel.
In early 2014 I was 33 years old, I weighed 280 pounds and my hours were drastically cut at work. I now had extra time on my hands and nothing to do with it. Every now and then I would go watch my mom and step dad run a 10k race and it was exciting, but I always thought I could never do that. I was the heaviest I’ve ever been, very depressed, in more pain than ever before and breathing was a daily chore. I had to do something, so I decided to try to start running again. I figured it's inexpensive, easy and healthy. As it turns out, the healthy part was the only one I got right. I couldn't run a 1/4" mile on my treadmill in the garage. It was so frustrating and I wanted to quit every second that I was walking or running. I just kept telling myself that I don't want to die, even though sometimes I wasn't sure if that was true. I finally got the courage up to run outside, I guess I was afraid of people looking at me and judging me. Soon after I had shooting pains in my legs, so once again like many other times in my life I quit running.
5 years old and I'm not sure why I am in my underwear :)
UPDATE: On April 10th 2017 I was riding my brand new Cervelo P2 on a solo training ride and was involved in an accident. I don't remember exactly what happened, but I woke up on the ground bloody and muddy. I landed about 50 feet or so from my bike and completely destroyed it. At this point I didn't even make one credit card payment on in and just like that my Ironman / Pectus Awareness dreams were over or so I thought. My carbon frame was cracked in two places, my handle bars were bent, my helmet was cracked and I suffered road rash on my arm, bruises on my head arm, legs and ribs. I was able to go to the hospital and also send x rays to the Mayo Clinic to check out my bars. Everything turned out ok and after a couple weeks of healing I was ready to begin training. The only problem was that I didn't have a bike.
There were several people that welcomed me into the support groups on Facebook. It was nice to be able to openly discuss my pectus with other people that were similar to me. After reading some posts and having several discussions I kept seeing the name Dr. Jaroszewski. I went to the website DrJPectus.com and watched every video and then read every line of information she had about pectus. Some of the people in my group were planning on going to have their surgery with Dr. J at the Mayo Clinic in Phoenix Arizona and I really wanted to go as well. I unfortunately had to go through my primary doctor and see local “specialists”. This one specialist actually told me that I could get a “filler” put under my skin, but on top of my sternum to give me a “normal” look because my pectus was just cosmetic. I never had any contact with Dr. Jaroszewski or the Mayo Clinic at that point, but Dr. J was already in my corner. I pulled out all my notes and I showed them to this specialist. He said “What do you want me to do? I can’t do this surgery on you.” I told him that I needed referrals to get all the tests completed on Dr. Jaroszewski’s pre surgical checklist. He agreed and I began to get every test done and failing them as I went. It was bittersweet to see just how bad my chest was on a CT scan and how much my heart and lungs were affected from the stress test. Next, I was able to get in touch with Kelly Myers which is Dr. J’s Pectus Coordinator and she helped me tremendously. For the next nine months I would get a test done, then wait and then repeat. I also spent those months getting into “surgery shape” by losing as much weight as possible. I then completely changed my diet and focused on healthier eating. I bought a FitBit and stopped drinking soda. I then began to log every single thing I put into my body. I’m a numbers geek and I was able to turn this into a game. Calories in vs. calories burned! After my final test I sent everything to Dr. Jaroszewski along with a letter asking to be considered for surgery and waited patiently for her response. Several weeks later Kelly called me and said Dr. J will accept my case. I felt so excited, nervous, relieved, happy and scared all at the same time.
There are many opinions on which technique or procedure is better, but in the 1980's the Ravitch technique was the surgery of choice. The Nuss procedure wasn't even developed until 1987, but I'll get more into that later. The Ravitch technique was developed in the 1950's and is an invasive surgery that involves cutting into the chest and removing the sternum, cartilage and sometimes ribs. The sternum is sometimes flipped and a small bar is then inserted underneath to hold it up in the desired position. The bar is typically left implanted for about 6 months until the cartilage grows back.
Once we were home it was time to start scheduling our return trip for my actual surgery. It turned out that my surgery date would be February 16th, 2016. That date came and I was ready to face it head on. We checked into the hospital at 7am, did some paperwork and then waited patiently. I was so sick of living with pectus excavatum and all the issues that went with it. I believe for that reason I had a sense of calm that day. Whether I lived or died, I would be different and that was ok with me. I then had to change into my hospital gown, get into bed and hooked up to the machines. My family was able to sit with me before meeting with Dr. Jaroszewski and some of her team. I was wheeled into the operating room and I remember just looking up at the ceiling and feeling very cold. There must have been six to eight people in the room with me getting everything set up. They were very nice and just told me to relax and that they would see me later. That is all I remember.
13 years old & you can really see my deep dent
and another one