Invisible Illness [Health Update]

Invisible Illness

Life is busy! If, on top of everything else we had to do, we had to consciously control our: heart rate, digestion of food, and every breath we took; it would be impossible! Subconsciously we control these essential tasks of living, allowing us to take them completely for granted. It is because we do not have to think about it, we may not even be aware if one of these systems is malfunctioning or not working as efficiently as possible!

The average person breathes about 20,000 to 25,000 times per day. Every breath is vital to our survival and when done correctly can allow us to intake oxygen and eliminate carbon dioxide. Breathing is imperative for proper function of our nervous system, cardiovascular system, and digestive system, just to name a few. The symptoms of improper breathing become very ambiguous and coincide with multiple diseases and illnesses. This makes it extremely hard to diagnosis when your main symptom is not dyspnea (shortness of breath).

So difficult in fact, that over the past two years I have gone to see 18 different doctors/specialists from: Family Practice Physicians, Sports Medicine Physicians, Endocrinologists, Gastroenterologists, Neurologists, Infectious Disease Doctors, Allergists, Cardiologists, and Pulmonologists. I have had 67 (blood, urine and/or stool) tests completed. I have had 31 tests from: MRIs, to (multiple) ultrasounds, CT scans, I wore a 5 lead, 30 Day, 24/7 heart rate monitor, several echocardiograms, and 7 stress tests…just to name a few! When test after test came back as normal, we celebrated that I did not have whatever various disease or issue but were more perplexed with what it could possibly be.

To anyone who has struggled to get the appropriate diagnosis, I feel for you and I understand first-hand how frustrating it can be. To those of you who cannot fathom such chaos, I am so happy you have not had to experience this in your life and pray you never do. It is one of those situations where you have to walk in the same shoes to truly grasp the mental, physical and emotional roller-coaster it is to see doctor after doctor, do test after test, and not have any answers. Meanwhile, enduring seemingly decent to OK days and every once in awhile even good days. Days where others look at you and say, “It can’t be that bad, you are strong and you look great!” What they don’t see on a weekly basis are the bad days where I have numbness and pain down my legs (especially the right leg) and I experience lightheartedness, dizziness, massive fatigue, nauseousness, occasional chest pain and full body cramps. There is no rhyme or reason to what may or may not be a good day.

(I had to wear this 5 lead heart rate monitor 24/7 for 30 days!)

After a successful Ironman Taiwan the later part of 2016, we thought perhaps I had overcome whatever the issue was. I stopped seeing doctors and continued to train for Ironman Arizona were I had massive cramping and numbness down my right leg on the bike portion of the race and was significantly slower then predicated but managed to come back and run my fastest Marathon to date. We thought perhaps I just had a ‘bad day’ on the bike in Arizona and continued training for Ironman South Africa. I actually had a good training block with very little bad days leading into Ironman South Africa and we thought we were finally on the right track again. However, it was during Ironman South Africa when things really came to a head. I jumped on the bike after the swim and almost immediately, I was having numbness and pain down my legs. I was so lightheaded and dizzy I could not push on the bike, whatsoever. By the time I dismounted the bike at T2 my body was in such a complete cramp I could barely get off the bike without falling. I could not even move/walk, due to the severe pain in my body. I ended up DNF’ing that race and immediately upon return to the states I was back investigating what was the root of all my pain and, ultimately seriously affecting my career.

(The above photo was taken at Ironman Arizona’s finish line, I was clearly in a ton of pain)

To be a professional triathlete has been my dream since I was a little girl. I understand that a lot of people get into the sport later in their lives but I have been doing IronKids since I was seven years old. This was back in the mid 90’s when IronKids was truly a triathlon: swim, bike, and run…for kids! I love this sport with all my heart; it is a part of my identity. The thought of a sickness taking my dream away as quickly as I got it was unbearable. With that being said, the pain I was experiencing racing Ironman South Africa and in the training after, was equally unbearable.

I saw another neurologist, 2 more cardiologists, and a pulmonologist. This time we had seven separate stress tests performed since the symptoms were absolutely linked to exercise. During the seven stress tests, doctors took: blood work, ultrasounds, EKG’s, blood pressures on all my limbs of my body, and injected saline bubbles into my blood. In fact, I was not planning on racing Ironman Boulder because of concerns that the issues were related to my heart. I had a last minute Stress Test (performed three days) before Ironman Boulder to verify if it was safe or not to race. It was determined that I was OK to race on a cardiovascular standpoint. This was a hard decision for me to race Ironman Boulder because I knew that something in my body was wrong but the doctors told me that it had nothing to do with my heart.

The multiple stress test results indicated that I do in fact have a breathing issue. At the time, where the problem was originating was still uncertain. There was speculation it might be Exercise Induced Asthma, but, after trying out an inhaler, I had an adverse reaction to it. I ended up dry heaving on the side of a trail. It was clear that the inhaler was not making a positive difference at all.

On September 7^th, I went to National Jewish Health Hospital for another stress test. This time I had a camera placed up my nose and down the back of my throat to watch my vocal cords as I was exercising on a stationary bike. Dr. Tod Olin is the only doctor in the nation performing this test. In a normal person the vocal cords will remain wide open or even expand during exercise. However, when I exercise (especially under heavy load) my vocal cords become very restrictive not allowing enough oxygen into my body leaving me: lightheaded, dizzy, short of breath, having numbness and pain down my legs, cramping, etc. It has been so severe the past few months I greatly feared it could be career ending. 

I finally have a diagnosis of what has been happening in my body. I have been struggling with Exercise Induced Laryngeal Obstruction for the past two years now. We were told by Dr. Tod Olin that even a 10% obstruction would make breathing feel 40% harder. We are unsure of the amount of obstruction that I have been experiencing. Dr. Tod Olin is currently in the process of developing the software to measure each person’s exact obstruction rate down to the nearest millimeter. Dr. Olin, has developed his own breathing technique to help athletes like myself combat the condition, allowing proper airflow during exercise. Through Biofeedback, he is able to coach the individual (while performing vigorous exercise) to learn how to breath correctly.

(The above picture is my vocal chords and the airway becoming constricted as I go into heavy loads of exercise)

To finally know what has been causing me so much pain and holding me back is such a blessing. I am determined to learn the new breathing technique and hopefully come back stronger then ever!

I want to thank all the incredible doctors and nurses I have seen the past two years. It is with all your knowledge, help and persistence that I finally have an answer. Because of the amazing “A” team of doctors and nurses I am currently working with, I have the hope I need to return stronger then ever! Thank you so much to all my family and friends for your unending support. Thank you to my amazing Sponsors who have stuck by my side through this difficult time especially Guy Chemical. Thank you to the most amazing husband, Jeff Mack, for always believing in me and being my rock every day. Lastly, thank you to God for making this journey possible!

If you would like to get in touch with Dr. Tod Olin and his amazing team at National Jewish Hospital, you can contact him via his email: petc@njhealth.org

Dr. Olin would love to chat with anyone who is struggling with similar conditions as what I went through or if you suspect that you may have EILO as well!

Danielle

Visit My Website / View My Other Posts

Danielle Mack is professional Triathlete residing in Boulder, Colorado. She found her passion for triathlons at a young age. However, it wasn’t until she turned sixteen did she really start training strictly for triathlons. Through various paths God has lead her through the years including Xterra’s and Adventure Racing she discovered her ultimate love, long course triathlons, especially Ironman’s!