Categotry Archives: Health

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14 weeks post op

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Categories: Health

Time has flown by this time and I am happy to write that I ran my first 5 miles today! The last mile was tough because I had to stop and go but it was worth it. My right side hurt from it from it as well so I came home and slept for 2 hours. A good super exhausted feeling.  And ahhhh cool bed sheets.  No brace, life is great.  The doctors advise to progress slowly and exercise based upon how I feel.  So far so good.  They say 6 months and I will feel normal…as I still can feel the bars and am numb to the touch. I still cannot twist such as in the car when going backwards to turn around. I will not be able to ski nor bike because falling at this point could cause the bars to shift and if they do, will find myself back at the Mayo Hospital in Phoenix. Running was a risk, will see how the evening goes. Gnite!

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10 weeks post op

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So what’s new?  Well I am trying not to wear my brace that much and going for a more comfortable garment… the camisole.  Still sleeping on the recliner and on my back.  That keeps any sneaking up pain from scaring me. Hopefully I will try sleeping in the “big bed” by the first of July.

I might have noticed some improvement in the way I breathe when walking at a slight incline… I appear to take fewer breaths.  But I am not 100% sure if it is so.  Since my blood vessels and veins have compensated and rerouted the flow to accommodate my PE, i believe it needs a push to reroute again otherwise I’m not sure how long it will take for a normal flow.  Running will definitely get that going if it hasn’t started yet.

I am so excited to start to exercise more and get my brain working again…to write again and think of the most beautiful time of year… Fall!

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9 weeks post op

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Its been a very uncomfortable week since I tried to exercise with 2 lb weights and garden.  Not sure exactly what happened but assume the bending over and picking up pots that I thought were okay to lift, has now caused me so much pain.  The back pain that radiates to the right front side is excruiating.  I noticed it start to throb going to work on-site for the first time on Tuesday of this week, driving for an hour. I am taking ibuprofen, getting into the hot tub and not wearing my brace. The brace is starting to hurt my ribs through tension.  I will be careful next time… no lifting, no matter how tempting! Just love being at the house more… it has always been a sanctuary during each day and season.

Today – will write some more in Hensel and Gretel.  That title needs to be changed to something simpler and maybe have the background resemble the old story.  Also working on word logic puzzles to get back to where I was before the surgery.  So much to write, not enough attention, must focus.

 

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8 weeks post op

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Hello, it has now been a whopping 8 weeks since the surgery and 1 week since my last post.  I am still wearing my brace for most of the day but take it off for a breather or two.  I am continuing to feel better overall but my bars clamp down hard a lot of times.  It does feel very awkward most of the time and always uncomfortable when I drive. Today I did some arm exercises using some 2 lb weights – 2 sets of 20.  Getting in shape right now is such a arduous process.  Been working on one of my cuckoo clocks today during one of my downtimes – the cuckoo bird and door needed to be adjusted as well as the pendulum. Moovie time now!

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7 weeks post-op

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So now I am 7 weeks post op.  Am currently on prescription ibuprofen and continuing to eat good nurtritious food.  What I forgot to mention was that I had to go to the ER a week after my return home because my oxygen dropped to dangerous levels…the lowest was 78%.  The hospital checked for pneumonia or clots but what they found was that I had a lot of fluid in the pleural cavity.  They decided not to do a thoracentesis and sent me home with supplemental oxygen.  That lasted for a while until the visit with my Pulmonologist, Dr. Good. He ordered an x ray and found that my chest cavity was full of fluid and my lungs were compressed.  So basically I couldn’t breathe well at all.  He decided to do a thoraentesis and drained quite a bit… a 1.2 liters.  He could only drain one side at a time due to possible lung collapse.  Ugh.

So after bouts of uncomfortableness, sadness and pain, I am starting to feel better.  It is still hard to sleep the way I want and I feel popping sensations in the chest. I am able to walk well but am having a hard time driving.  I will attempt to drive to town tomorrow.

What does it look like?  I have 2 large steel/nickel horizontal bars implanted under the ribs. They have been sewn on with metal wire.  The two scars are just below my breasts, so they will be mostly covered and eventually fade out.  Overall I am pleased with the outcome.  My chest looks normal now and my CT scan shows a heart that has placed itself in the correct position and my lungs have room to expand as well as the liver.  I always feel the bars inside pushing out while my body wants to return to where it was before.  My torso in the area still feels very numb to the touch.  Not sure if the feeling will ever return although I feel stinging sensations all around this area.

Will post again soon….

 

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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.

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c3dr

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Categories: Health

This is what I call my sprint up to my house from the mailbox.  It stands for Coal Creek Canyon Driveway Run… don’t think anyone would of ever guessed it!  I always use my day planner for writing my exercise goals… after the acronym, i write the # of times its been accomplished, then a little box to check it off.  When I was running longer distances, it would be like this:  a preceding box, the word ‘run’, the distance in mi and then the # of times circled.  It could be a ‘sprint’ or ‘bike’ or whatever.  When the year is up, I will know exactly how many miles and number of times I’ve succeeded that year.  Of course, I could use an Android app or something, but believe me, it is much more fun this way! 

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Running

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Running has been fun, it’s replaced the slog of bike riding and it seems so much easier for me at least.  Today, I ran 10 miles for the first time late in the day.  Sometimes its easy and sometimes its not… just depends on what the body wants to do.  Listening to the iPod in the snow, dreamy.

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Update – My Health

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I am pleased to write about my visit to National Jewish Hospital for a pulmonary consultation.  My referral was to Dr. Good.  I was very impressed.  He thoroughly discussed my records, spoke to me in a manner that answered ALL my questions (without me asking them).  Dr. G was sincere about helping me determine the exact area of my shunting and spent 2.5 hours with me discussing anatomy and also the chemistry behind the mechanics of lung and heart function.  Dr. G stated that he will find the answer.  So I am scheduled for many tests:  Bronchial Provocation, hypoxic and hypercapnic procedure, exercise tolerance w/ arterial line and a shunt study procedure.  In between this time, they have also set me up with their cardiologist named, Dr. Buckner and then a follow up with Dr. Good.  The only part that makes me nervous is the arterial line they will place in my wrist!

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Update – Congenital Heart Defect

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On Sept 8th, Dr. Jeff Rubinstein tried to attach the Amplatzer device.  It took approximately 3 hours but it was not successful.  The rationale is unclear although I continue to have significant right-left shunting, continued symptoms and the diagnosis remains.  I have been referred to another physician named Dr. John Caroll at the Anshutz Uuniversity Medical Center in Aurora.  I will be going through further testing using more sophisticated technology to determine the cause and placement and to attempt to repeat the procedure in the future.  UPDATE: 10.16.09:  schedule another TEE, but this time it is in 3-D. woooooooooo. 11.08.09:  It is unclear  what I may have/combination of issues I have at this point.  I am wearing a monitoring device and a CTA was performed, awaiting results. LATEST: 1.28.10: I may have a pulmonary shunt, referred to National Jewish Hospital, the place to go supposedly.  Appointment not until April though.

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