IIW 15 Post: Take a little look at the life of Miss Always Invisible

“Take a little look at the life of Miss Always Invisible
Look a little harder, I really really want you to put yourself in her shoes
Take another look at the face of Miss Always Invisible
Look a little closer and maybe then you will see why she waits for the day When you’ll ask her name”

MY INVISIBLE FIGHT

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 not in my head:

  • chronic abdominal pain
  • chronic nausea
  • alternating between diarrhea/constipation
  • mucus & blood in stool
  • undigested food in stool
  • loss of appetite
  • syncope/pre-syncope
  • fluctuations in weight
  • rectal bleeding
  • dysphagia
  • various skin rashes
  • photosensitivity
  • dizziness
  • changes in blood pressure
  • flushing
  • hot/cold flashes
  • insomnia
  • allergies/asthma
  • tachycardia
  • olfactory hallucinations
  • skin rashes
  • hair loss
  • urticaria
  • ADHD
  • word loss
  • incoordination/balance issues
  • dizziness
  • cognitive dysfunctions
  • general fatigue/malaise
  • heart palpitations
  • olfactory hallucinations
  • arthralgia
  • stiffness in joints
  • muscle twitching
  • eye twitching
  • numbness in hands & fee
  • chest tightness/pressure
  • shortness of breath
  • swollen lymph nodes/glands
  • itchy skin, tunnel vision
  • red/dry/itchy eyes
  • growth in both height & feet
  • sleep apnea
  • abnormal menstrual cycle
  • arthritis
  • chronic fatigue syndrome
  • irregular heart rhythm
  • IBS
  • jaundice
  • occipital neuralgia
  • palpitations
  • recurrent infections
  • autoimmune disorder – under investigation
  • alternating sleep patterns
  • burning sensation UNDER skin but ABOVE the muscle

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sick-4

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“Miss Invisible” By Marie Digby

There’s a girl
Who sits under the bleachers
Just another day eating alone
And though she smiles
There is something just hiding
And she can’t find a way to relate
But she just goes unnoticed
As the crowd passes by
And she’ll pretend to be busy
When inside she just wants to cry
And she’ll say…

[Chorus]
Take a little look at the life of Miss Always Invisible
Look a little harder, I really really want you to put yourself in her shoes
Take another look at the face of Miss Always Invisible
Look a little closer and maybe then you will see why she waits for the day

When you’ll ask her name

In the beginning, in the first weeks of class
She did everything to try and fit in
But the others they couldn’t seem to get past all the things that mismatched on the surface
And she would close her eyes when they laughed and she fell down the stairs
And the more that they joked
And the more that they screamed
She retreated to where she is now
And she’ll sing…

[Chorus]
Take a little look at the life of Miss Always Invisible
Look a little closer I really want you to put yourself in her shoes, shoes
Take another look at the face of Miss Always Invisible
Look a little harder and maybe then you will see why she waits for the day when you’ll ask her name

Then one day just the same as the last
Just the days spent in counting the time
Came a boy who sat under the bleachers
Just a little bit further behind…

30 Things About My Invisible Illness You May Not Know

Invisible Illness Week 2015 

  1. The illness I live with is: Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), May-Thurner Syndrome (MTS), Pelvic Congestion Syndrome (PVCS), and Postural Orthostatic Tachycardia Syndrome (POTS). There’s at least one more condition still undiagnosed – but only time will tell.
  2. I was diagnosed with it in the year: 2015
  3. But I had symptoms since: I’ve had abdominal pain for as early as I can remember, but the real symptoms started around 1997 and have continually gotten worse over the years.
  4. The biggest adjustment I’ve had to make is: Giving up some of the things I love the most – working with animals, going to concerts, hanging out with friends, sports & activities, ghost hunting, traveling, etc. My life is rather limited at the moment.
  5. Most people assume: Before diagnosis most people thought I was sick because of anxiety or stress. Now that I have a diagnosis, a lot of people assume I have a lot of free time since I am I am on medical leave from work. They couldn’t be more wrong. I have anywhere from 1-5 doctor’s appointments or medical testing scheduled every week and my doctors all are an hour and a half away (3-hours round-trip, not to mention appointments/test can be anywhere from 1hr to 5hrs themselves). I also am still in school, since I can do the work on my schedule, and have the rest of life that EVERYONE deals with. Plus running this blog and volunteering where/when I can. My life is full of everything BUT free time.
  6. The hardest part about mornings are: Waking up and getting out of bed. I have trouble sleeping at night, so I am always tired in the mornings. Then when I actually do get up, I’m usually symptomatic and out of it. The minute I climb out of bed, the POTS makes my heart rate increase and blood pressure decrease, causing dizziness, clumsiness, and sometimes syncope. It takes a large cup of coffee and at least an hour to wake up enough to even attempt to get dressed and start my day, which is terrible for early morning doctor appointments as I have to account for this time by waking up an extra hour earlier than a normal person would.
  7. My favorite medical TV show is: Diagnose Me, Mystery Diagnosis, Monsters Inside Me, and House.
  8. A gadget I couldn’t live without is: My cell phone. I do almost everything on it.
  9. The hardest part about nights are: Being unable to sleep because of pain. Night is always the worst. You just lay there, all alone in the dark, with only your thoughts to keep you company.
  10. Each day I take __ pills & vitamins. (No comments, please): Daily: 13 unless I need “emergency meds” which can bring the total upwards of 20 pills or so.
  11. Regarding alternative treatments I:I’m open to try anything, but I go in with a bit of skepticism and I do a lot of research on it (even on traditional medicine) before I’ll put it into my body because I am way too reactive and sensitive to new things.
  12. If I had to choose between an invisible illness or visible I would choose: Invisible Illness. I can hide being sick when it’s necessary or when I don’t feel like explaining myself.
  1. Regarding working and career: I think if you can manage to work and maintain your health then you absolutely should. Unfortunately for most of us, it isn’t feasible to keep up with a 40-hour set work schedule, making it one of the first things to go.
  2. People would be surprised to know: I have symptoms every single day. Some days are better than others, but never do I truly experience an actual break. The symptoms can change from day-to-day, or even hour-to-hour, allowing me to “tolerate” things better at certain times. Still, even though I am in constant pain and feeling nauseous, I still get things done because I have to. I’ve learned to manage and fight against my body just to have some sense of “normal”.
  3. The hardest thing to accept about my new reality has been: Not having the support of certain loved ones. They haven’t to understand my diagnoses. They hardly ask me how I am feeling, or when they do they don’t actually listen to the answer. They don’t read my blog or like my updates on Facebook, but they’ll comment on other people’s statuses or share stranger’s stories about things like cancer or other acute illnesses. It makes me feel completely worthless and invisible sometimes, but I try to not let it bother me since I do have the love and support of so many others.
  4. Something I never thought I could do with my illness that I did was: Continuing to be persistent, despite being turned away from almost every direction. I kept pushing for the doctor’s to listen to me (despite normal lab results) and FINALLY got a diagnosis after all these years.
  5. The commercials about my illness: Unfortunately, my conditions are rare and there are no commercials. One of them (the Nutcracker Syndrome) JUST got placed on the rare disease list after multiple letters sent by people in my support group. How amazing is that? Hoping one day, they’ll all be there.
  6. Something I really miss doing since I was diagnosed is: Being active – either with cheer or roller derby, or even just hiking, swimming, or camping on occasion.
  7. It was really hard to have to give up: Working at the animal hospital. I loved it, but it killed me. When I left, I knew I’d never be coming back because of the strain it put on both my mind and body. I miss it severely.
  8. A new hobby I have taken up since my diagnosis is: Blogging 🙂
  9. If I could have one day of feeling normal again I would:I would love to be a patient advocate and help other’s navigate the healthcare system to find their diagnosis because it is really hard to do alone. Or counsel those with chronic illness. And of course, volunteer (at the very least) with animals again.
  10. My illness has taught me: To be hopeful. To see the struggle in others and to be kinder. To remain strong and to believe in MYSELF. But most of all – to know that I am capable of never giving up, despite the odds against me.
  11. Want to know a secret? One thing people say that gets under my skin is: “Are you sure you’re not just stressedor that it’s related to stress…?” Super Sure – Thanks for trying, though.
  12. But I love it when people: Ask me about my conditions, how I’m feeling, or what the doctor are saying. It not only makes me feel validated, but it shows that you care and are interested in my well-being.
  13. My favorite motto, scripture, quote that gets me through tough times is:

“It can’t rain all the time” (The Crow).

“Here’s an optimistic thought: You’re not chronically ill, you’re medically interesting”.

“My list of diagnosed rare diseases may keep getting longer, but my determination keeps getting stronger”.

“When life knocks you down, roll over and look at the stars”.

“You are fierce, You’re a survivor. You’re a fighter through and through. Little brave, breathe. There is a warrior within you”

  1. When someone is diagnosed I’d like to tell them: First comes congratulations (usually because they have looked for a diagnosis for a long time). Then, I tell them that it’s all going to be ok because NOW they have the tools to fight against whatever it may be. Having a diagnosis is powerful and EMPOWERING. And last, but not least, that I am there for them in whatever way I can help.
  2. Something that has surprised me about living with an illness is: The lack of compassion from people in general.
  3. The nicest thing someone did for me when I wasn’t feeling well was:I am super lucky because I can think of so many examples, but what comes into my head first are the friends and family who visit me regularly to make sure I’m doing ok or when my husband will get me Starbucks before he comes to wake me up in the morning. Makes my day that much more special.
  4. I’m involved with Invisible Illness Week because: I think it’s important to bring awareness to the lives of those living with an invisible illness and how hard it is to try to live with a chronic illness. I don’t think most people understand, or even try to understand. You are constantly judged – by doctors, by family, by friends, by the public. . Hell, even those with VISIBLE disabilities judge us. It’s not right. Constantly having to prove that your symptoms are real and that you are actually sick, despite appearances. Just because “I don’t look sick” doesn’t mean I am not sick. It’s a bigger deal than you think or acknowledge. People have died because of these conditions. Others will commit suicide because of the pain and poor quality of life they experience. And more than likely, I am never going to “be better”. My only real hope is to be able to manage most of my symptoms so I can have a better quality of life. It’s like my ongoing struggle means nothing because “it’s not cancer” or some other condition you are more comfortable with or know more about. The public’s perception of invisible illness has to change and Invisible Illness Week is a great platform to educate everyone on what it’s really like to feel invisible.
  5. The fact that you read this list makes me feel: Loved.Thank you for taking the time out of your day to learn about me and my illnesses. You will never know how much that means to me – or anyone with a chronic illness for that matter. Thank you –just thank you.

Follow-up With Cardiology

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The Conclusion from Medical Updates Part 1Part 2Part 2.5,

Part 3: The Cardiac MRI, &  Part 3: The Exercise Stress Test


Although preparing for any type of doctors appointment is stressful enough for almost anyone, it is even harder when you have a chronic illness, or even worse – multiple chronic conditions.

There is always so much preparation and pressure that goes into getting ready for each appointment:
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However, it’s entirely worse when you know you are  awaiting abnormal tests results.

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My list of questions for my cardiologist had gotten so long,

I was afraid to even present it to the cardiologist:

  • Medication questions:
    • Should I take the beta-blockers in the morning or evening?
    • Will I stay at this dose?
  • Abnormal test result questions:
    • Could this condition be genetic? Is it associated to a particular gene or chromosome?
    • Could the cardiac issues be caused by the vascular compressions or vice-versa?
    • Could I still have P.O.T.S. or are my symptoms caused by the cardiac issues?
    • Is there any way to know the cause of the pericardial effusion?
    • Was there a blockage in the arteries?
    • What is the treatment?
    • Why did I only show an abnormal heart rhythm after exercise?
    • Should I continue to salt-load and water-load, even though that is against cardiac treatment but good for P.O.T.S.?
      • Should I still wear the compression socks?
    • Why did these abnormalities not show on any EKG?
    • Do I have sustained or nonstained ventricular tachycardia?
      • Is the tachycardia polymorphic or monomorphic?
    • Is there any evidence that I’ve had a heart attack?
    • Could the ventricular tachycardia be causing the low ejection fraction?
    • Do I have diastolic or systolic heart failure?
    • Could the cardiac issues be causing the gastrointestinal symptoms?
  • Other questions:
    • Will I still go to the Dysautonomia Clinic at University Hospital?
    • Should I get a second opinion from vascular surgery?
    • Could any of this be related to neurotransmitters or hormones?
      • particularly, catecholamine and cortisol levels?
    • What s the likelihood I have an infiltrative disease or autoimmune disease?
      • Amyloidosis?
      • Lyme?
      • Sarcoidosis?
      • Other?
  • Most important question:
    • What is my prognosis?

I had visions of the doctor literally picking me up and throwing me out of the office, shortly followed my “scroll” of questions. I highly doubted that it would actually happen, but you never know these days. It’s was a lot to ask. I typically try to keep both my medical concerns and my list of questions to five or less each, respectively. However, I felt this was super important and I needed to know. I opted to take my chances.

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The night before my follow-up appointment with the cardiologist I could barely sleep.

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There were too many things running through my mind. Do I have everything I need? What am I forgetting? What do I do if he says [this]? What if they tell me [that]? I literally drove myself crazy just over thinking everything. I knew I needed sleep more than anything. It was an hours drive again and I was scheduled first thing at 7:30 a.m. I think I finally fell into sleep somewhere around 3:00 a.m. before my alarms went off at 5:00 a.m. I was too anxious to need much sleep anyway, the adrenaline kept me awake that morning on the drive anyway.

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We arrived at the clinic that morning, early as usual.

It wasn’t long after we checked in that we were escorted back to the exam room. From there, though, we had a wait, which is unusual for this clinic.  We wait in silence as 5 minutes go by, then 10,  and 20. You could feel the anxiety and tension build up in the tiny exam room as we waited on the cardiologist. I could see my husband getting impatient, it’s all over his face. I, myself, feel like I’m going to explode inside. I don’t dare to breathe. Just when I can’t take it anymore, the doctor walks in.

I take a deep breath. My palms are sweaty. My heart is beating. 

I just want to get this over with.


results

Blue=My notes

Red = Abnormal results

The Echocardiogram With Agitated Saline:

Physician Interpretation:

Left Ventricle: No regional wall motion abnormalities noted. The left ventricle
cavity size is normal. Left ventricular systolic function is mildly reduced. Normal left ventricular diastolic function with normal LA pressure. Left ventricular wall thickness is normal. There are false chords noted in the left ventricle

[Had to look this up, as I had no idea what it meant: “Left ventricular (LV) false chordae tendinae (false chords) have been implicated as a source of idiopathic left (IL) ventricular tachycardia (VT). However, it is unknown whether pretest bias contributes to an apparent association with disease. The purpose of this study was to determine the prevalence of false chords on direct inspection of the LV endocardium”.]

Right Ventricle: Global RV systolic function is normal with a tricuspid annular
plane excursion of 1.76 cm. Right ventricular size is normal.
Left Atrium: The left atrium is normal in size with a left atrial volume index of
10 ml/m2.
Right Atrium: The right atrium is normal in size. Eustachian valve seen in the
right atrium (normal finding).

[Of personal note here, I looked up to see why this would be noted like this and I found this:

“Eustachian Valve: It is a remnant of a fetal structure that directed incoming oxygenated blood to the foramen ovale and away from the right atrium.  

Incomplete regression of this structure results in a thickened ridge at the IVC/RA junction, which can occasionally be thick enough to mimic thrombus or a right atrial mass on echocardiography, cardiac CT, or cardiac MRI.

A thickened Eustachian valve may also interfere with placement of an atrial septal defect or patent foramen ovale closure device.

The Eustachian valve can be seen in the 4-chamber view or the bi cavil view of the right atrium; it is seen in approximately 25% individuals, at the junction of the IVC and right atrium. It appears as an elongated, membranous, possibly undulating structure. Usually it is of no physiological consequence, but can be confused with an intracardiac thrombus, cause turbulent atrial blood flow, complicate IVC cannulation or serve as a site for endocarditis formation”.]

Aortic Valve: The aortic valve was not well visualized. No evidence of aortic
regurgitation is seen. No evidence of aortic valve stenosis.
Mitral Valve: Trace mitral valve regurgitation. No mitral valve prolapse is noted.
Tricuspid Valve: Grossly normal. Unable to estimate Right Ventricular systolic
pressure due to inadequate or absent TR Doppler signal. There is trace tricuspid
regurgitation.
Pulmonic Valve: The pulmonic valve was not well visualized. No pulmonic valve
stenosis. Trace pulmonic valve regurgitation.
Vessels: IVC is normal in size with normal inspiratory collapse suggesting a normal
right atrial pressure (3) rnrnHg.
Aorta: The aortic arch was not well visualized. Aortic root is normal in size. No
obvious coarctation of the aorta noted by 20, Doppler.
Pericardium: No definite echocardiographic evidence of hemodynamic compromise. There is a moderate pericardial effusion localized near the right ventricle.
Shunts: There is no obvious right to left shunt at rest, with cough, or Valsalva on
agitated saline contrast examination.

The Holter Monitor:

1. Sinus rhythm, predominantly sinus tachycardia, with rates between 61-190
bpm and average rate 101 bpm .
2. Supraventricular ectopy: One isolated PAC in 24 hrs.
3. Ventricular ectopy: One, isolate 7 beat run ~f monomorphic ventricular
tachycardia with irregular rate 169 pm at 11:59 AM; otherwise, no other
ventricular ectopy.
4. Longest R-R was 1.2 seconds during sinus arrhythmia.
5. Symptoms of “fatigue, faint, abdominal pain, dizzy, chest pressure, chest
pain, flutter, chest tightness, pre– syncope,” and patient events all correlated
with sinus tachycardia, and in particular, the  symptom of “pre-syncope” correlated with sinus tachycardia 185 bpm; with the  7 beat run of monomorphic ventricular tachycardia was asymptomatic.

The Exercise Stress Test:

Summary:

1. Fair age- and gender-adjusted exercise capacity.
2. No evidence for exercise-induced ischemic ECG changes at the level of
exercise achieved.
3. Normal HR response (patient held Metoprolol for 48+ hours prior to exercise,
normal BP response. Target heart rate was achieved.
4. Pulse oximetry readings were greater than or equal to 95% on room air
throughout -the study.

Note: The baseline ECG reveals sinus tachycardia, rate of 107 bpm. ST-T shifts of ischemia or ectopy noted.

The Cardiac MRI w/ and w/o Contrast:

RESULT: Cardiac MRI
Clinical History: Pericardial effusion, cardiomyopathy. Evaluate LV function
delayed enhancement pattern
Technique: Following initial axial haste images, cine and dark blood images were
obtained in short axis, and vertical and horizontal long axis. 20 ml of ProHance
were administered intravenously, without adverse event. Immediate images were
obtained for perfusion. Delayed images were obtained in all 3 planes to evaluate
for delayed hyperenhancement. VIBE sequence was additionally acquired through the
lungs.
Cr: 0.95
eGFR: 72

The National Kidney Foundation (NKF) suggests only reporting actual results once values are < 60 mL/min (they state normal values as 90-120 mL/min). An eGFR below 60 mL/min suggests that some kidney damage has occurred.

KIDNEY DAMAGE STAGE DESCRIPTION GFR OTHER FINDINGS
1 Normal or minimal kidney damage with normal GFR 90+ Protein or albumin in urine are high, cells or casts seen in urine
2 Mild decrease in GFR 60-89 Protein or albumin in urine are high, cells or casts seen in urine
3 Moderate decrease in GFR 30-59
4 Severe decrease in GFR 15-29
5 Kidney failure <15

Findings:
Survey images of the mediastinum show normal heart size. There is no pathologic mediastinal adenopathy or pleural effusion.
Atria: Right and left atria are normal in size and contract normally.
Right Ventricle: Right ventricle is normal in size. Globally preserved systolic function is preserved. No wall motion abnormality.
Left Ventricle: Normal size and wall thickness. Globally preserved systolic
function without wall motion abnormality.
Pericardium: Small pericardial effusion without evidence of constrictive physiology.

Perfusion images show: Homogenous perfusion without focal abnormality.

Delayed hyperenhancement images show: No delayed myocardial enhancement. Apparent focus of increased signal intensity seen at the lateral aspect of the base appears most consistent with a focus of epicardial fat when comparing to SSFP images and four-chamber and short axis sequences ( four-chamber series 3 image 59, short axis series 57 images 1 through 3) .

Left ventricular ejection fraction: 59%
End diastolic volume: 84 ml
End systolic volume: 34 ml
Stroke-volume: 50 ml
Cardiac output: 4.2 liters per minute
Left ventricular myocardial mass (at ED): 59 g
Right ventricular ejection fraction: 51%

IMPRESSION:
No delayed myocardial enhancement to suggest infiltrative cardiomyopathy.
Preserved LV systolic function without wall motion abnormality.
Small pericardial effusion without evidence for constrictive physiology.


INTERVAL HISTORY:
Nichole returns following her initial visit with me on 07/08/2015. At that time, we had performed an echocardiogram to assess for LV size, systolic function and possible pericardial effusion. This revealed the presence of a moderate size effusion without clear evidence of hemodynamic compromise. Also surprising was the presence of borderline reduced LV systolic function.. Based upon these findings, a cardiac MRI was run and revealed preserved LV systolic function, EF 59%, with normal left ventricular end diastolic and systolic volumes. RV ejection fraction was also normal at 51%. There was a small pericardial effusion which was circumferential and without clear evidence of septal shift or other stigmata of constrictive physiology. Also surprising was the presence of what was identified to be a 4-beat run of wide complex tachycardia which occurred at a rate of 169 beats per minute at 12:00 a.m. There were no associated symptoms. There were multiple entries recording complaints of fatigue, faint abdominal pain, dizzy, chest pressure, chest pain, flutter, chest tightness and presyncope, all of which were correlated with sinus tachycardia. Based upon these findings, we start Nichole on metoprolol XL 25 mg daily, which she initially felt somewhat more fatigued and dizzy on, but since that time has adjusted to. She has also made a more concerted effort to use volume and sodium loading, for which she feels better overall from a POTS standpoint. She continues to report left-sided chest pain, which is not necessarily positional in nature.

REVIEW OF SYSTEMS:
Positive for weight gain, fatigue, loss of appetite, chills, dizziness, nosebleed, shortness of breath, chest pain, palpitations, near fainting/fainting, leg cramps, abdominal pain, diarrhea, constipation, nausea, vomiting, blood in stool, rash, itching, nighttime urination, snoring, back pain, muscle aches and joint aches. Comprehensive review of
other 12-organ review of systems is otherwise negative.

ALLERGIES:
Epinephrine caused adverse reaction.
IMPRESSION:
1. Pericardial effusion in the context of presumed autoimmune disorder not otherwise specified, possibly lupus with negative antinuclear antibody (ANA), undergoing further evaluation with [Immunology]. Pericardial effusion does not appear to be associated with constrictive physiology by echocardiographic criteria. This is likely chronic in
nature. I cannot exclude the possibility of chronic pericarditis as a contributing cause to her chest discomfort.
2. Probable postural orthostatic tachycardia syndrome (POTS), complicating #1.
3. New onset wide complex tachycardia, possibly ventricular tachycardia. I cannot exclude atrial dysrhythmia with aberrancy tolerating beta blocker therapy, with associated preserved left ventricular (LV) systolic function by magnetic resonance imaging (MRI), which is gold standard data for ventricular volumes and function.
4. Prior history of superior mesenteric artery (SMA) syndrome and May-Thurner syndrome.

PLAN:
1. Referral to Dr. [Vascular Surgery] at the University cardiovascular center for a second opinion.
2. Consider initiation of low-dose ibuprofen. I will discuss this plan of care with Drs. [gastroenterology] and [immunology] to ensure that this is appropriate from their perspectives.
3. Continue beta blocker therapy for ventricular tachycardia versus supraventricular tachycardia (SVT) with aberrancy with monitoring symptoms.
4. Return to clinic in three months’ time for clinical reassessment.
5. Repeat echocardiogram in three months’ time for reassessment of pericardial effusion, particularly should we initiate nonsteroidal anti-inflammatory drug (NSAID) therapy.
6. Avoid prednisone therapy due to potential provocation of a relapsed pericarditis.
7. Collaborative care with Drs. [gastroenterology] and [immunology].


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The good news: My heart is not failing like they originally thought on the left side. In fact, my ejection fractions are higher on the left than the right.

The bad news: Looks like there are some valvular problems with blood flow, but only mildly. Also, there are a few structural and/or congenital abnormalities which have led me to some further research that is quite interesting, but I won’t post until I’ve got a few more pieces together and have talked to the doctor about it.

Finally, there’s no significant answers or treatment plan at this time. At this point we are continuing medications as previously prescribed. Both the GI and the Immunology doctors gave the go ahead to start 200mg Ibuprofen twice a day (although right before this test I was on 800mg ibuprofen one time a day for bleeding following my endometrial ablation – which means it probably won’t reduce the pericardial effusion, but we’ll see).

The cardiologist does not want to start me at the dysautonomia clinic until he is sure that the effusion is not contributing to my POTS symptoms, although he doubts that it is. He still firmly believes I have P.O.T.S. or some form of dysautonomia, but he doesn’t want to send the referral just to get sent right back over something he should be handling on his own anyway. Still no idea what could be causing the pericardial effusion, but the cardiologist continues to believe it is something autoimmune related (due to its chronic nature), despite what the immunologist now says about having zero indications for autoimmune disease (even though that wasn’t what she told me) but not sure if we’ll ever find it if it is. Did a random skin biopsy on my arm last week when I had a “vasculitis-type rash”, but it came back inconclusive as well. I should know more when I get the report when I get the sutures out of Tuesday.

The cardiologists did, however, give me a referral for a second opinion from vascular surgery at University. I think he has some ideas on some of the research I am contemplating as well, but he won’t say at this time. He put my order in as “Urgent”. The new hospital called a couple of days later to schedule, but I couldn’t get the other hospitals to send records and scans over it time for the appointment. We rescheduled with them for this upcoming Tuesday. I’m hoping they can shed more light on the impact of the compression disorders or, at the very least, believe they exist (which they do).

It’s been a whirlwind couple of weeks as far as medical stuff goes. While I’m tired and ready for a break, at least we’re getting somewhere and I’m not going to die like I thought after the first few phone calls from the cardiologist’s office. My heart is not “normal”, so it’s not good news but it’s not bad either. So far, the Metoprolol is not helping the tachycardia, but I am still on a low dose and I really need to call the doctor and see if we can do an increase. So while this is the end of the chaos with cardiology, at least for now, it’s only the beginning for so many other new doctors and appointments.

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Medical Update Part 3: The Exercise Stress Test

Continued from Medical Testing Updates: Part 1, Part 2, Part 2.5, Part 3:Cardiac MRI


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Two days after the cardiac MRI, we were driving back up to the hospital once again. Luckily, this was my last medical test before my follow-up appointment with the cardiologist. The scary symptoms I mentioned in Part 2.5 had finally subsided by that morning and I was able to get a good night sleep without being interrupted.

My test was scheduled for the afternoon that day, which is by far NOT my preference. Not only is traffic usually bad (because the hospital is just more than an hour and a half away), and usually appointments are backed up as bad the highway. However, one of the many reasons that I love my current hospital is that they are never late – ever! It runs like a well-oiled machine. Still, afternoons are always rough for me because I’ve usually lost all my energy by then and  my symptoms sometimes peak mid-afternoon (although super early morning and night are worse).

I was a little worried for this test, but only in the fact that I actually had to run on a treadmill.

In front of people.

Spooky.

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The problem with this, you see, is that every time I exercise, I pass out. Or come close to it. No matter how fast or slow I take it, inevitably I’m plagued by symptoms.  My heart rate increases, more than 200bpm sometimes, and my blood pressure plummets – then the tunnel vision and hearing loss come on, letting me know that I better lay down or my body will do it for me. So, needless to say, exercise and I are no longer friends.


Which is sad, really, because I was an athlete throughout most of my life.

I loved training and working hard.

I loved competition.

I loved winning.

But sickness took that all away from me.

In childhood, I trained with Olympic swimmers and hopefuls until my body forced me to quit in my early teens. Even then, I remained active despite my illness.

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In college, I took up cheerleading after some friends hassled me into trying out for the college team. Surprisingly, despite my hesitation, I picked it up quickly and loved it. I love to fly – it was the only time I felt free in those days. I was captain for the last two years of school and even did one year on a competitive team that was training for Worlds [competition]. But yet again, unable to keep training, my illness took another love away from me.

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A few years down the line, I joined the local roller derby team. While it was fantastically fun and I loved the people, I never got really good at it before I had to quit once again.

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Even to this day when people ask me what I like to do for fun, I tell them the above. Or surfing. None of which I can still reasonably do, though. So in a way, I feel like a liar, but on the other hand, these things were a part of me – and still would be if it wasn’t for chronic illness.


Anyways, getting back on topic. While I love exercising and my body used to be both strong and efficient, those days are long gone now. My husband and I had a bet going about how long I’d be able to even stay on the treadmill: I chose 4 minutes, he said 5. That tells you how well I’m doing these days.

Plus, I wasn’t allowed to have coffee that morning, so you can only imagine how tired and cranky I was by the time the afternoon rolled around.

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I knew I had to get this test done, but I was not looking forward to it at all. I put on my old cheerleading ASICS (with the hand grips – cheerleaders, you know!) and some yoga pants.

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I was ready to do this test – or pass out trying. At least then, I wouldn’t have to do it again. I just hoped that when I would inevitably fall down that I wouldn’t land on my face.

Unless-you-fell-off-the-treadmill..


The Exercise Stress Test:

(taken from The Mayo Clinic)

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A stress test, also called an exercise stress test, gathers information about how your heart works during physical activity. Because exercise makes your heart pump harder and faster than usual, an exercise stress test can reveal problems within your heart that might not be noticeable otherwise.

An exercise stress test usually involves walking on a treadmill or riding a stationary bike while your heart rhythm, blood pressure, and breathing are monitored.

Your doctor may recommend an exercise stress test if he or she suspects you have coronary artery disease or an irregular heart rhythm (arrhythmia). The test may also be used to guide your treatment if you’ve already been diagnosed with a heart condition.

Your doctor may recommend an exercise stress test to:

  • Diagnose coronary artery disease. Your coronary arteries are the major blood vessels that supply your heart with blood, oxygen and nutrients. Coronary artery disease develops when these arteries become damaged or diseased — usually due to a buildup of deposits containing cholesterol and other substances (plaques).
  • Diagnose heart rhythm problems (arrhythmias). Heart arrhythmias occur when the electrical impulses that coordinate your heart rhythm don’t function properly, causing your heart to beat too fast, too slowly or irregularly.
  • Guide treatment of heart disorders. If you’ve already been diagnosed with a heart condition, an exercise stress test can help your doctor find out how well treatment is working. It may also be used to help establish the treatment plan for you by showing how much exercise your heart can handle.In some cases, stress tests may be used to help determine the timing of cardiac surgery, such as valve replacement. In some people with heart failure, results from a stress test may help the doctor evaluate the need for heart transplantation or other advanced therapies.

Your doctor may recommend a test with imaging, such as a nuclear stress test, if a routine exercise stress test doesn’t pinpoint the cause of your symptoms.

An exercise stress test is generally safe, and complications are rare. But, as with any medical procedure, it does carry a risk of complications.

Potential complications include:

  • Low blood pressure. Blood pressure may drop during or immediately after exercise, possibly causing you to feel dizzy or faint. The problem should resolve after you stop exercising.
  • Abnormal heart rhythms (arrhythmias). Arrhythmias brought on by an exercise stress test usually go away shortly after you stop exercising.
  • Heart attack (myocardial infarction). Although exceedingly rare, it’s possible that an exercise stress test could provoke a heart attack.

How to Prepare:

You may be asked not to eat, drink or smoke for two hours or more before an exercise stress test. Ask your doctor if you should avoid caffeine or certain medications the day before the test, because they can interfere with certain stress tests. Otherwise, you can take your medications as usual.

If you use an inhaler for asthma or other breathing problems, bring it with you to the test. Make sure your doctor and the health care team member monitoring your stress test know that you use an inhaler.

Wear or bring comfortable clothes and walking shoes to the exercise stress test.

When you arrive for your exercise stress test, your doctor asks you about your medical history and how often you usually exercise. This helps determine the amount of exercise that’s appropriate for you during the test.

Stress test

During an exercise stress test

A nurse or technician places sticky patches (electrodes) — which are connected by wires to an electrocardiogram (ECG or EKG) machine — on your chest, legs and arms to record your heart’s electrical signals. A cuff on your arm checks your blood pressure during the test. You may be asked to breathe into a tube during the test to determine how well you breathe during exercise.

You then begin walking on the treadmill or pedaling the stationary bike slowly. As the test progresses, the speed and incline of the treadmill increases. You can use the railing on the treadmill for balance, but don’t hang on tightly, as that may skew the results of the test. On a stationary bike, the resistance increases as the test progresses, making it harder to pedal.

You continue exercising until your heart rate has reached a set target or until you develop symptoms that don’t allow you to continue. These signs and symptoms may include:

  • Moderate to severe chest pain
  • Severe shortness of breath
  • Abnormally high or low blood pressure
  • An abnormal heart rhythm
  • Dizziness
  • Certain changes in your electrocardiogram

You may stop the test anytime you’re too uncomfortable to continue exercising.

After an exercise stress test

After you stop exercising, you may be asked to stand still for several seconds and then lie down for about five minutes with the monitors in place so that they can continue taking measurements as your heart rate and breathing return to normal.

When your exercise stress test is complete, you may return to your normal activities for the remainder of the day.


My appointment was at 3, but we got there a little early because traffic was surprisingly not that bad. The hospital closes at 5 p.m. since it is only a research hospital and does not have an emergency room or inpatient services, so it was half empty by this time (unlike the mornings which can be hectic with people). So thankfully we were called right back to get started early. Win-Win.

My technician running the exam was absolutely the cutest, bubbliest woman ever, and both me and my husband loved her.  She joked back and forth with us. She answered every question I had. Listened to all my concerns. She took any sense of anxiety I felt instantly away. I couldn’t say enough good things about this woman.

After getting my leads hooked up, she called in another tech to help her “just in case”. In case what, I come flying off the treadmill? Exactly! My husband said he could catch me, but she couldn’t let him because it’s considered too much of liability. Instead, I get another tiny, skinny woman. I prayed I wouldn’t smush her when I inevitably would pass out. But surprisingly, I did better than I thought I would.

The treadmill starts off extremely slow and they increase speed in each stage. It was nice because I could watch the computer screen in front of me that shows me all my vitals and EEG readings live as they were happening. I kinda wish I had this at home for when I am exercising. Better than having to stop to take measurements with multiple machines. However, I could tell as the speed and incline on the treadmill were increasing, I wasn’t experiencing any sort of abnormal heart rhythm, which I thought was odd given my symptoms and recent testing.

My blood pressure 122/68 mm Hg at rest before the start of the test. 

Stage 1: 134/74 mm Hg

Stage 2: 148/68 mm Hg

Peak: 154/68 mm Hg

My resting heart rate was 107 bpm before starting the test.

Stage 1: 132 bpm

Stage 2: 174 bpm

Peak: 186 bpm

My oxygen levels also INCREASED with exercise.

Resting: 95%

Minute 1: 98%

Minute2: 97%

Minute 3: 97%

Minute 4: 98%

Minute 5: 98%

Minute 6: 98%

Minute 7: 97%

Minute 8: 98%

That’s right ladies and gentleman, I made it a full 8 minutes before they stopped my testing due to symptoms.

Based on my age, my target was 160 bpm. I hit my technical target heart rate early on but I asked to keep going in hopes to catch something on the EEG. We finally stopped when I started getting light-headed and felt the tunnel vision coming on (which typically means I’m about to pass out).

I was a little disappointed – seemed like a normal test. That was until I stopped exercising and sat down. Then my heart rate started to down…. then up…. then down…. and up to 200 bpm. Well isn’t that interesting, I think. The technician agrees. She hasn’t seen anyone’s body do that AFTER the test. Another reason I am special, I guess. Moments later, a couple abnormal heart beats in a row.

She makes me stay an additional 10 minutes to make sure I am ok before I leave. I feel pretty good, aside from being tired and a little nauseated. The dizziness and tunnel vision are gone. After the time is up, she agrees to let me leave despite the fact that my heart rate is still going up and down but I tell her I feel absolutely normal.

I’ll get the results of my test (and the MRI) at my follow-up appointment with the cardiologist early the following week. Now I am even more nervous, given the weird new symptoms the days prior and now this odd reaction after the exercise stress test. But as per usual, it’s a waiting game until I meet with the doctor again. I try to remain calm, but there’s just so much I feel the need to know at this point. I have way too many questions. I decide to focus all my nervous energy on prepping for the follow-up appointment, because there’s nothing left to do at this point. I can’t tell if I feel good or bad about that idea. Still, I need to restart the beta-blockers tonight and all I can hope is that it goes better than my first attempt. We’ll see.

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Medical Testing Update Part 2

Continued from Medical Testing Part 1


“The human heart is such a complex organ,

fragile and sturdy all at once”

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It took a few more days for my holter monitor results to come back, likely because they have to check hours of data and compare it to my symptom diary.

I should have taken a photo of mine, but I forgot. Here's a good example though.

I should have taken a photo of my diary, but I forgot. Here’s a good example of what it looks like.

I tried not to be ridiculous with it, as I am often very symptomatic throughout the day, even on the days I consider “good”. I probably could have recorded every time I stood up, or laid down, or walked to the bathroom, etc. etc. but I chose to limit it to a range of activities, including the ones above. I wanted a decent representation of what goes on throughout the day, without being insane about it either. The hardest part was determining if and when each moment was worth pressing record and logging how I felt.  Like I said in my previous post, it felt like a relatively uneventful day as far as severe or unusual symptoms go and I didn’t expect outstanding results.

I was standing in line at the pharmacy to pick up my monthly medications when the cardiologist himself called (again!). After the last bit of news, my heart immediately felt like it skipped a beat (and in all likelihood, it probably did). As he starts talking, I am rummaging  through my crowded purse for any piece of paper and a pen, which luckily I had (even though it was just an old receipt from the store). He said he reviewed my monitor results himself and that he found a few concerning things on it. Mainly, I had some really high readings, some over 200 beats per minute. However, he was more worried about the abnormal rhythms that showed up. Usually they worry about 3 of these abnormal heart beats in a row. I had 7  abnormal beats consecutively. Not only that, but they are coming from the bottom of my heart, which are considered to be the most dangerous.

Diagnosis: ventricular tachycardia.

VT

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The following is from the NIH Website:

Causes

Ventricular tachycardia is a pulse rate of more than 100 beats per minute, with at least three irregular heartbeats in a row.

The condition can develop as an early or late complication of a heart attack. It may also occur in people with:

  • Cardiomyopathy
  • Heart failure
  • Heart surgery
  • Myocarditis
  • Valvular heart disease

Ventricular tachycardia can occur without heart disease.

Scar tissue may form in the muscle of the ventricles days, months, or years after a heart attack. This can lead to ventricular tachycardia.

Ventricular tachycardia can also be caused by:

  • Anti-arrhythmic drugs (used to treat an abnormal heart rhythm)
  • Changes in blood chemistry (such as a low potassium level)
  • Changes in pH (acid-base)
  • Lack of enough oxygen

“Torsade de pointes” is a form of ventricular tachycardia. It is often due to congenital heart disease or the use of certain medicines.

Symptoms

You may have symptoms if the heart rate during a ventricular tachycardia episode is very fast or lasts longer than a few seconds. Symptoms may include:

  • Chest discomfort (angina)
  • Fainting (syncope)
  • Light-headedness or dizziness
  • Sensation of feeling the heart beat (palpitations)
  • Shortness of breath

Symptoms may start and stop suddenly. In some cases, there are no symptoms.

If ventricular tachycardia becomes an emergency situation, it may require:

  • CPR
  • Electrical defibrillation or cardioversion (electric shock)
  • Anti-arrhythmic medications (such as lidocaine, procainamide, sotalol, or amiodarone) given through a vein

Ventricular tachycardia may not cause symptoms in some people. However, it can be deadly. It is a major cause of sudden cardiac death.


The cardiologist goes on to say, given that my “heart squeeze” was much lower than expected, he really wants to rule out a blockage in my arteries (although he thinks it’s unlikely because of my age). Plus the echocardiogram also showed I still had some pericardial effusion that he’d like to investigate further.

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He asks if I have set up the MRI appointment… I sure did. Insurance approved it immediately.

What about the stress test? Yes, sir. Both are scheduled for next week.

“Remind me”, he says, “have you done an exercise stress test before?”

Stress cat

I ask him if the ventricular tachycardia is related to the P.O.T.S. symptoms? Unfortunately, he’s never seen VT and P.O.T.S. co-exist. Typically, any tachycardia with P.O.T.S. is associated to atrial tachycardia (from the top of the heart). Interesting… I want to ask so many more questions, but I’m still in line at the pharmacy and it’s my turn at the counter.

He finished by saying he already called in a prescription for a beta blocker called Metoprolol and I am to start it immediately. Good thing I’m standing at the counter I guess. I pick up my shopping bag of medications, including the new one.

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Of course, as soon as I’m home, the computer comes on and I begin my studies using the University of Google’s medical degree I’ve been working on for the past 5 1/2 years in my search for a diagnosis. Luckily, the medication information says I can take it day or night, as long as it’s around the same time every day. Biggest side effect: lethargy. So nighttime it is then. It says to take with food. Great, this should make for a good time. I eat a few bites of chicken my husband got himself for dinner and down the hatch it went. So far so good… or so I think.

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The food makes me uncomfortable immediately. No surprise there. But 30 minutes later or so, as I’m getting ready for bed, the palpitations start and I’m having horrible chest pain. Wait, isn’t this medication supposed to STOP chest pain and palpitations. I’m so dizzy, I can barely walk up the stairs to get my blood pressure monitor.

First reading – BP: 118/82 HR: 153.  I immediately lay down. Wait five minutes. Second Reading – BP: 138/87 HR: 185. I’m getting worried. I don’t feel well AT ALL. This is definitely NOT a normal reaction. I think I am actually sweating. Am I dying? I can barely sleep that night, my body is running a marathon. I’m petrified. I take readings throughout the night, but only on my heart rate since the oximeter is quieter and won’t wake up my husband, unlike the BP machine. My heart rate never drops below 150, even at resting. At some point in the night, I finally pass out and when I awake the next morning, my vitals are back to normal. I make a note to call the doctor when they open.

Luckily, I didn’t have to wait that long. A nurse from the hospital calls to go over prep for my upcoming cardiac testing. First thing she says, stop the beta blocker until AFTER all cardiac tests are done next week. *Thank God*. I write a note in my “undiagnosed warrior journal” to discuss with doctor at the follow-up appointment or if it happens again when I re-start the medication again.

I just had the weekend before the second round of cardiac testing began once again. This time, I was a little more focused and anxious than the first tests I expected to be “normal as usual”. Luckily, I had a lot of distractions.

The foster dog got really sick so I spent my days cleaning up vomit and diarrhea off my carpet. Our old roommate and one of my husband’s best friends who moved to Florida a few years ago came in for a quick visit and we hadn’t seen him since our wedding last June. Plus, the usual nonstop medical paperwork and records, filing disability papers, emails back and forth to my STD lawyer on my appeal, communications with work about perhaps starting “work from home” (despite still being out on medical leave), and a surprise, short-notice visit from my out-of-state landlord.

Although I did not have a lot of time to worry over the weekend, that quickly changed the following Monday morning, as it was time to head up to the hospital for the MRI of my heart. As if that isn’t nerve-wracking enough, the universe evidently thought it was also the perfect time for the onset of yet another new symptom. A symptom that was not only painful, but frightening all the same….

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To Be Continued….