May 22, 2013 by

My PE Story Unfolded

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Categories: Health

I won most of my ribbons and metals in sports that were more focused around skill than aerobic ability. Exercise, especially endurance sports was mostly difficult during my adolescent years but I managed to play tag, run very short sprints and just be outdoors a lot. I remember in my elementary school, they had a 2-mile fun run. I was so out of breath and very skinny, so I walked for most of it. I also had what the doctors called “nervous stomach” where taking narcotic meds would be the only cure. The feeling would be a stabbing sensation starting at my stomach area and then would grow to include the lung area. It would hurt to breathe. These episodes only lasted for 2 weeks at most and only occurred once a year. I seemed to outgrow them by my junior year in high school. I started to really notice the pectus excavatum during my early teenage years. I thought that this was normal for me. My parents did nothing. I do remember getting a lot of visual black outs (w/o passing out) as a child. My parents didn’t think anything was wrong. I spent a lot of my twenties not exercising too hard and mostly doing floor weights, crunches, lifts and walking. I started to feel a bit out of sorts at times (malaise) and the internist at the time stated that I had Gilbert’s Syndrome because my bilirubin was higher than normal. When I got married in the late 90s, my left arm went completely numb while walking down the aisle. The numbness did not subside afterwards so I went to a neurologist and he could not pinpoint the problem but that I had no reflexes in that arm. He took an MRI test looking for MS. I did not have it. My arm came back after about 3 weeks while on Celebrex. He did state I had a noticeable heart murmur and advised me to seek a cardiologist’s opinion. I had no idea about the murmur previously. I seemed to also have bouts of lightheadedness from time to time. I never went to see a cardiologist. I was 27. I moved to Colorado after my divorce and the symptoms came on full force. I was 34/35. My boyfriend would take me hiking and biking and I found these to be intolerable. I thought maybe I had not acclimatized after 6 months. I started up again and it did not improve. I pushed through a lot and found myself slowly getting better but then many symptoms occurred. I had ophthalmic migraines without the pain (where I couldn’t see for 20 minutes), visual black outs, dizziness, lightheadedness and SOB. I worked at Kaiser and they ordered an MRI of my brain and got an eye exam. Nothing was abnormal. I felt out of sorts, stomach pains (but different from the early years), fatigue and slight nausea. Kaiser ordered a barium enema to view my stomach but nothing notable was seen. I was prescribed some Prilosec. So I left it alone again. I continued to feel ill many times (which would include weakness, fatigue, recurrent fever blisters, stomach pains, slight nausea, dizziness, edema and SOB) and I was convinced something was wrong with my liver. This was because I seem to have a very slight yellow tint to my skin at times. I also started to have a really low tolerance to alcohol (even in small amounts) and to any medication. As a result, my heart rate would speed up rapidly and I would feel sick. My primary care physician, now at New West Physicians, ordered many tests and nothing was notable except on occasion my tests would show an increased bilirubin. He did not believe I had Gilbert’s Syndrome however. I thought I had some kind of allergy and changed my eating habits. I also went to an allergist after a scare with my throat closing a bit and found I had no allergies at all (obtained from a back pin prick test). So I let it go again. I asked my PCP if I could be referred to a cardiologist for the heart murmur evaluation. He agreed. I went to see Dr. Martell at Exempla Lutheran. He confirmed the murmur and ordered a stress test with him monitoring. While the test was underway and increasing in resistance, I started to become cyanotic and my oxygen decreased rapidly to 86%. He stopped the test and ordered a stress and bubble test along with an echo. The results where that I had a right to left shunt in my heart. The echo suggested I had some valve insufficiencies as well. From there I had a Trans Esophageal Echo that seemed to not show the same results. He suggested not to do much weight lifting. After deliberating with Dr. Martell and a cardiovascular surgeon, the decision was to close a suspected PFO (Patent Foramen Ovale) in the wall of my heart between the right and left chambers. I underwent a cath procedure at Lutheran but it took 3 hours with no success. There seemed to be a problem, the suspected hole was not there, although I still had a shunt. After being upset about the whole ordeal, I went to the Anschutz Medical Center/University of Colorado Hospital to see one of the best there, Dr. John Carroll, head of cardiology. They performed a bubble Doppler study but one that would measure if bubbles entered close to my head. There were few that made it that far up. I also had another TEE but it did not prove a PFO. He said he could not do anything else for me and referred me to a Pulmonologist at National Jewish Health. Dr. Good noticed on examination my pectus excavatum. He ordered many pulmonary tests (including an A-line stress test). The results where that I have to breathe twice as hard as an average person. My VO2 max suggests I have to breathe twice as much as everyone else, according to Dr. Good. He suggested that I exercise the lungs to open them up a bit and advised against any altitude hiking. Even though my pectus was considered severe according to the pulmonologist, they did not suggest surgery, stating no evidence suggests that improvements occur and that only younger patients should consider repair.  I started to see the cardiologist (Dr. Kearn Buckner) there at National Jewish Health because I liked the pulmonologist and they were also great friends and worked together well. So I went to regular checkups with both physicians as a duo and any other symptoms I would refer to my PCP. My overall symptoms just continued. New symptoms appeared. On a regular basis, I would get bouts of nausea, chest pains and increased heart rate symptoms for no apparent reasons. My SOB would increase and would always feel like I never improve during exercise. I would also get deep pains in my legs (but not in my joints also) for no apparent reason that would last about a week or so and disappear again until the following year. This would last for a couple of years and I had explained those symptoms to my doctors. On a yearly exam in 2012, my pulmonologist ordered a night pulse ox due to my SOB. The results were not significant although the reading had indicated a dip to 85%. Many other symptoms occurred on a regular basis and my PCP ordered more blood tests. The results came back with nothing once again. He referred me to a rheumatologist for an immunity evaluation.  I was starting to wonder why I was feeling bad a lot of the times but nothing was helping. I just felt as though I’ve being pricked and prodded and I suffered mentally for it.  Most recently I visited the cardiologist, Dr. Buckner, for a yearly checkup and he asked about if I was exercising much. I said no, not because of time, but because it was just too hard and exhausting. He ordered a stress test. The EKG was abnormal so he ordered a CTA. I remember after taking the beta blockers and nitro (under the tongue) and lying under the machine with my arms over my head, my heart started to beat faster. They wanted me to be calm, but I was. I did not have any calcification as suspected. The CTA revealed a caved in chest with little room at all for my heart, lungs or anything else for that matter. My heart is being squeezed by my sternum, chest wall and my spine. Rough calculation shows a Haller in the 5s. Dr. Buckner says the chest pain and rapid heart rate is probably not coming from my heart but could be an autonomic nervous system problem. He wants to order another A-line stress test, tilt table test and possibly refer me to a neurologist. I feel uncomfortable going to sleep because sometimes my heart rate increases when lying in a flat position. I also get recurrent chest pains. As of 12/26, I have elected to get a PE specialist consultation for repair.

One Response to My PE Story Unfolded

  1. cyc Post author

    I decided to have the Nuss surgery… my haller index was recalculated as an 8 by the cardiologist and surgeon. Most surgeries are done on adolescents since bones, cartilage and tissues are much more pliable. I was 41 soon to be 42 when I had mine done… so pain is much more prevalent and the recovery is known to be worse.

    I have left off posting indvidually about the recovery process because it was horrific. But will now attempt to remember and explain some of the processes, both in pain and feeling normal:

    1. Had surgery at the Mayo Hospital in Phoenix for 5 days counting 4/04 and then stayed at a hotel nearby for another 2. So leaving on my birthday (10th). I had mostly great nurses attending and doctors that would visit each day. The pain level right after the surgery was low since I was completely numb with heavy narcotics, cocktail of other stabilizing meds and the OnQ pain catheter. Rapidly it started to hurt worse as time elapsed. I spent a lot of time sleeping, waking for meds and sleeping again. I made sure to eat something at each injection and administration so to not make the nausea worse than it already was. I was weak to sit up and move around and tried to walk on the third day after they took the urine catheter out. It was tough to make it around the nurses station but like all things tried, got better as time went by.

    2. Talk about uncomfortable waiting to get on the airplane with extreme pain and nausea. A lot of this was due to getting off of the IVs they’ve given me and having me take oral meds on a continual basis. It didn’t help arriving at the airport 3 hours early. The drive home was extreme. The car had to stop a couple of times due to pain and nausea before arriving. I was also extremely constipated and uncomfortable.

    3. Finally got home and had to try and find a way to go to the bathroom. After several chemicals, the trusted enima worked a little. The rest of the several weeks of recovery has been slow, agonizing, painful and sickening. After 3 weeks, I decided to try and reduce the narcotics… bad idea. Sharp, stabbing, killing pain. I couldn’t get to my recliner fast enough and take my oxy. At this point sleeping was not an issue as the drugs made me quite whoosy.

    4. Drug withdrawal was not something i had prepared for. The emotional trips of not having any dopamine in my brain; the shakes and shivers; being hot and cold at the same time making it difficult to even go to the bathroom; the uncomfortable and constant fidgeting; sleep disturbance, shall I say more? I chose to quit the drugs cold turkey because I wanted the chemicals OUT! It was a really tough 1 1/2 weeks nonetheless.

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