Quick Update On The New Year

Hello, Everyone.

Sorry that I’ve been M.I.A. lately, but (as per usual) everything has been hectic once again. However, I wanted to check in with you all and provide some updates as to what’s been going on in my life and with my health.

First off, thank you to everyone who has followed along with my blog this past year and to all the new readers who have spent time browsing and viewing everything I have put up on the blog (especially those from the Nutcracker Syndrome Group Facebook Page- and thank you to Margreta for her wonderful research skills and for finding/linking to my page). I have a lot of great information currently saved that just needs to be edited and posted, so hopefully all of that will be up live on the page here soon. Also, this week is super exciting because it’s the 7th Annual Wear Purple Day Event for SMA Syndrome Awareness but more about that later (see details below).

As most of you know, right before the holidays I took a short break from medical testing, doctors appointments, and school. 3-weeks off?!?!?! While I was hoping to be super productive and get so much done during this time, I sadly spent almost my entire break in bed as I was knocked down hard by an extreme flare that -even now- I’m still not completely over. It’s been an awful couple of months for sure and most of my days have been spent sleeping rather than doing much of anything else. Quite disappointing. Then with school and appointments starting back up, I already feel like I am so far behind on everything.  Not to mention, I’ve  had a couple hard blows from some of my doctors and with my disability claims already this year. So, needless to say, 2016 has been far from a perfect start. Likewise, it hasn’t been overly exciting either.

At the beginning of January, I submitted the last of the documents that were requested for converting my short-term disability plan into long-term, although my STD claim ended the first week of December and I have yet to hear anything in regards to a decision. I do know that they sent my case for medical review and I’m guessing that’s not a good sign in terms of getting approval. I knew when I received the other denial letter from my first STD case that they were setting up to deny my long-term (or, at least, it seems like it anyway). Financially it’s been tough, but somehow we’re making it through – at least, for now.

Also, I’ve had some follow-up appointments with my both primary care physician and my gastroenterologist, as well as continuing the usual weekly appointments with my therapist. My bloodwork and urinalysis were showing some irregularities at the start of December, so we re-ran those labs hoping to see if there had been any changes  that could perhaps lead to a diagnosis for the underlying skin/allergy/systemic disorder that nobody can seem to figure out. Like usual, though, my tests came back normal; except for finding protein and urobilinogen on my urinalysis and the low vitamin D levels and a decreasing eGFR rate in my blood serology. However, the good news is that my amyloidosis protein serology came back negative and my cortisol levels (which were low over the summer)are within normal limits again. My primary care had ordered an ultrasound of my left kidney last week to make sure nothing else was going on, but the hospital informed me yesterday that my scan was normal as well. So no more answers, but no change in diagnosis at this point either.

My GI appointment is a long story, so I’ll have to save that for another time. In fact, I plan to use it as an example for my follow-up post to The Good Patient (Part 1 of 2) – The Bad Patient. I bet you can see where I am going with this. Also, I have some other things I want to discuss in regards to my psychological evaluations and appointments in therapy, but that will have to wait until I have more time as well. The next few weeks are hectic, as I have more labs and medical tests ordered. Next week I am scheduled for more blood screenings, a 24-hour impedance and pH study (since I couldn’t complete the first one), and an anorectal manometry – how miserable, really. I’m also waiting for the hospital to call so I can schedule an MRI Abdomen/Pelvis (which I have not had before) and then I go for a tilt-table test on March 1. After all, of that is said and done, I will then follow-up up with my PCP, GI, and Cardio doctors to discuss whether or not to move forward with the surgery that the vascular surgeon recommended for the Nutcracker Syndrome. I’m sure more things will come up between now and then, but that’s the plan so far.

Aside from all that, it’s just making it through another semester in school and learning to  somehow manage my symptoms, but that is becoming harder as time and time goes on. Does that sound like I’m doing enough to you? Some days I think so; other days I feel terrible for not doing more with myself – oh the dreaded guilt of chronic illness.

Finally, as I mentioned at the start of this post, this Thursday – January 28th- is the 7th Annual Wear Purple Day to promote SMA Syndrome Awareness. It’s an online event, but everyone (both patients and non-patients alike) are encouraged to join the event via the SMA Facebook Page (linked here) and post fun pictures of you or anyone else wearing the color purple that day in support. For more information, you can either send me a message through my blog, Facebook, or email accounts or you can message the event page directly. Please share with your friends, family, co-workers —> everyone and anyone that you know. Too many SMA Warriors have been lost this year and it’s important to bring awareness to this condition. I’m hoping to be posting videos, photos, and research both here and on the Undiagnosed Warrior Facebook Page starting tomorrow.


[Taken from the 7th Annual Purple Day for SMAS Page and written by Marge Reed (for the 4th Annual PURPLE Day- 28th Jan, 2013) and (slightly) adapted for the 5th Annual PURPLE Day, on the (28/01/2014), by Maria McMillan and again (updated for our 6th Annual event from 28/01/2015 to 30/01/2015) and updated for our 7th Annual PURPLE Day, Jan 28th to 31st, 2016.]

THE STORY BEHIND PURPLE DAY:

"On January 28, 2010, my friend Samantha Mina traveled 800 miles from Virginia to check into the Florida Mayo Clinic for SMA Syndrome.
An innovative SMA Mom Maria McMillan decided, before Samantha's departure, to ask friends and fellow survivor families around the globe to wear purple that day to show their support for SMA Syndrome sufferers. With hundreds of RSVPs and dozens of uploaded photos of purple-clad people, the first annual Worldwide SMA Syndrome Awareness Day was born.
Then nearly 1000 people attended during each 2011 and 2012, praise the Lord!
Indeed, the past couple of years were marked by leaps and bounds in global SMA Syndrome education and when the documentary style TV show "Mystery Diagnosis" scouted Samantha and featured her story on the Discovery Health Channel on 83010 the survivor support group swelled to 1200 members.

At 8th January 2014 our Awareness group now has 1508
members!

As at 4th December 2014, our Awareness Group now has 1756 members!
*As at 18th December 2015 our Awareness Group now has 2113 members*
We had almost 1400 attendees for our 4th Annual PURPLE Day, Jan 28th, 2013! (Inclusive of 'Non-Facebook attendees).
So, to celebrate all the incredible progress in SMA Syndrome Awareness that has been made thus far and to encourage its continuation in 2014 we invite you to participate in the 5th annual worldwide SMA Syndrome Awareness day on Tuesday January 28 2014 (to Thursday 30th January, 2014), to allow for global time differences, by simply wearing a purple article of clothing and/or a purple ribbon, or a whole purple outfit, if you wish! Please feel free to take a photo of yourself to upload to this page.
And now, we invite you to attend our 6th Annual worldwide SMA Syndrome Awareness Day on Wednesday 28th January 2015 to Friday 30th January, 2015 (to allow for global time differences.
We had 3991 attendees for our 2015 event!
*And now, we invite you to our 7th Annual 'PURPLE Day' from Thursday, Jan 28th to Sunday, January 31st, 2016*
Thank you for sharing our 2016 event both on Facebook and in the 'real world'.

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(Once again, you can join the event here)

 

 

 

 

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 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

VT vt2


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.

F3.large

pericardial_effusion

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….

Medical Testing Update: Part 1

I’m not entirely sure which is worse:

Having every test comes back normal and

you have no idea why you feel so horrible everyday

-or-

The sudden onset of one abnormal test after another,

slowly taking away any hope of you ever feeling better.


I’ve dreaded  writing this post, mainly because I still have so many more questions than I do actual answers at this point, but the final test results should be revealed at my follow-up on Wednesday and I figured that there is no time like the present. Well, there’s that, and also the fact that I want to share these findings in their entirety and explain exactly why I’ve been so quiet lately.

So much to say and not enough time or energy to do it all at once.

So this post will be broken down between a few different parts.

So much has gone on in the last couple months. These days, I don’t know what is connected to what anymore, particularly when it comes to my symptoms. I always knew that my diagnosis wouldn’t be a simple one, but it seems like every week now the doctors add one more new problem to the list. It’s been a lot to take in, especially because life keeps throwing in additional added stress that I honestly could do without currently. I haven’t had much time to think about anything, let alone process what this all means. I honestly haven’t even been able to research these results like I normally would, thus being left with so many unanswered questions. The doctors may lose it when I walk into my follow-up appointments with the two-page list of questions that I’ve already put together without even really trying.

If you remember from my earlier posts “Welcome to the new age” and “Oh doctor, doctor…”, tests had just come back, confirming I had three vascular compression syndromes (Superior Mesenteric Artery Syndrome, Nutcracker Syndrome, and May-Thurner Syndrome) as well as POTS (Orthostatic Tachycardia Syndrome), and I had just started care with a new cardiologist, who just so happened to notice some irregularities in my earlier cardiac tests from back in 2005, and again in February 2014 (but the results were dismissed by two different doctors for being “insignificant”). Anyways, he decided to order some follow-up testing before referring me over to the dysautonomia research clinic at the university’s medical school for treatment, hoping they’d also be able to refer me to one of the very few doctors in the country that treat the vascular compression disorders. I had honestly believed going into this round of medical testing that these tests would be (again) a waste of time, as they have been “insignificant” for 10 years now. I knew, though, that once these tests were finally completed that I’d be able to begin treatment for [at the very least – one part of] my illness. Obviously I obliged. I also had one more test that my GI doctor had also ordered, but figured that the non-stop medically testing was almost truly over. Finally!

But I was wrong… so very wrong.


Initially, the cardiologist ordered two tests:

Echo1. Echocardiogram with contrast.

 An echocardiogram is a test that uses sound waves to create pictures of the heart. This test is done to evaluate the valves and chambers of the heart from the outside of your body.

An echocardiogram can help detect:

Abnormal heart valves

Abnormal heart rhythms

Congenital heart disease

Damage to the heart muscle from a heart attack

Heart murmurs

Inflammation (pericarditis) or fluid in the sac around the heart (pericardial effusion)

Infection on or around the heart valves (infectious endocarditis)

Pulmonary hypertension

Ability of the heart to pump (for people with heart failure)

Source of a blood clot after a stroke or TIA

Contrast Used: Agitated Saline Injection

 Agitated saline solution administered via intravenous injection provides air microbubble contrast in the right heart. The air microbubbles are short-lived and diffuse into the lungs when traversing the pulmonary circulation. Therefore, the microbubbles enter the left heart only in the presence of a right to left intracardiac or extracardiac (pulmonary arteriovenous) shunt. Saline microbubbles are therefore helpful in examining the right heart and identifying shunts or holes in the heart.

2. Holter Monitor (24hr)

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A Holter monitor is a machine that continuously records the heart’s rhythms. The monitor is worn for 24 – 48 hours during normal activity. Electrodes (small conducting patches) are stuck onto your chest. These are attached by wires to a small recording monitor. You carry the Holter monitor in a pocket or pouch worn around your neck or waist. The monitor runs on batteries. While you wear the monitor, it records your heart’s electrical activity.

Holter monitoring is used to determine how the heart responds to normal activity. The monitor may also be used:

After a heart attack

To diagnose heart rhythm problems

When starting a new heart medicine

It may be used to diagnose:

Atrial fibrillation or flutter

Multifocal atrial tachycardia

Palpitations

Paroxysmal supraventricular tachycardia

Reasons for fainting

Slow heart rate (bradycardia)

Ventricular tachycardia


Like I said , I’ve had these tests before and I really wasn’t too worried about them.

Hell, the last time I even had a holter monitor on (back in 2005), I had to wear that baby for an entire month… in the middle of summer… in Florida… and you can’t get it wet… at all… even with sweat… So, 24 hours in Colorado – no problem. I’d say my symptoms were low-average on the day that I had the monitor on. I kept thinking to myself, of course, you’ll have a semi-good day for the first time in a long time BECAUSE you’re being monitored. I did have my usual tachycardia and dizziness, plus one episode of syncope, but nothing I would call spectacular or extraordinary, though. I did, however, have one very loving foster dog concerned about why I had wires and a box attached to me, so he was by my side non-stop throughout the entire day.

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Anyways, the next test was the echocardiogram. The saline contrast was definitively the most interesting part of the test- at least from a patient’s perspective. I was disappointed that they had me facing away from the screen when they actually injected it, but you can feel the bubbles as they move through the body and to your heart. Plus the second nurse was fun to watch, as she had no choice but to demonstrate good coordination skills when “swishing” the saline solution back and forth between the syringes, all while holding my IV catheter in at the same time since my veins refused to cooperate that day.

When the tests were done, I was told they’d be back in a few days and that the doctor would give me a call. Although, typically it’s the nurse who calls -not the doctor- but that’s beside the point. I went on my merry way and didn’t think twice about it again.

The next morning, as I’m still asleep from being up late due to sickness the night before, I see a missed call from the hospital and it shows that I have a voicemail. I press play and realize it was the cardiologist HIMSELF calling. Uh, oh… I immediately call back, but have to leave a message as he in currently in with patients. Well, crap!

Still, I didn’t expect the doctor to have found anything of significance anyways, so I let it go out of my mind and got started on the rest of my day. That afternoon, the nurse from the cardiologist’s office calls (I guess the doctor was still busy with patients) and says that the doctor wanted to make sure that someone called me with the echocardiogram results that had come in earlier that morning, although they were still waiting for the holter monitor results. She then tells me that the test showed that I didn’t have a hole in my heart, which is what was originally expected based on the previous cardiac results. Good, I think myself… another normal test.

For once, I don’t want abnormal tests – not when it comes to my heart, anyways.

Even more so because I watched my mother die from a heart attack at age 49.

But the nurse wasn’t done. Oh… She goes on to say that, unfortunately, it looks like there is still some pericardial effusion (which was also seen on the Feb 2014 test). More importantly, though, it looks like your heart is failing… *Excuse me, did you just say thatmy heart is failing?!?!* Well, your ejection fraction is less than 50% on the left side, which means your heart is pushing out less blood than it should be. The doctor wants to order a couple more tests if that’s okay.

*Of course it’s okay…

Am I really going to say no

directly after you just told me that

I’m going into heart failure.*

I’m connected over to the scheduling department at the main hospital to schedule an exercise stress test. They also have already started on the pre-authorization process for an MRI of my heart as well… with contrast. (Sadly, no bubbles this time around, just gadolinium). The hospital tells me that I’ll get a call soon, once my insurance approves the test, but the doctor wants this test done ASAP. I hang up the phone, in shock.

Did she really just say my heart is failing? I heard that correctly, right? 

I walk out to the deck and sat down quietly. The first thing I do, of course, is start Googling everything I can: “heart failure”, “low ejection fraction”, “heart failure, left side”, “low ejection left side” “causes of low ejection”…

Ejection-Fraction

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Just then, my husband walks out. He always has such good timing.

“What did the doctor have to say?

I pause for a moment, not sure what to tell him 

-or-  

if I can tell him at all…

Can I even say it out loud? I’m not sure.

“They need to order more tests because my heart isn’t pumping correctly, something about the left side and the ejection fraction.” 

I don’t want it to be a big deal, ya know.

At least not yet.

Not until I see the results and it’s all matter-of-fact.

“What did they order?”

“An exercise stress test and an MRI of my heart…”

My husband works in health insurance.

He knows how hard it is to get MRI’s approved because of the expense.

Typically, there has to be history and prior tests.

Unless there’s a legitimate reason the patients needs an MRI,

as opposed to other diagnostic tests.

“So what does this mean?”

“It means that my heart is failing…”

And with that, there’s nothing much more to say.

Of course, now I am worried. And starting to get scared. But what can I do but wait?  Besides, maybe it’s not that bad and they are just being cautious. It is the heart, after all. I try not to work myself up over it.

A few friends stop by that night and we act like everything is normal, because -ultimately-  it is relatively normal for me. I’ve lived with this condition for years, remember. Tests showed abnormalities 10 years ago.

10 YEARS! 

Plus, we’re still waiting for the holter monitor results. There’s no way they’ll come back any worse, especially when I wasn’t even that sick during the recording time.

But I was wrong, so very wrong… again.


To Be Continued…

Oh doctor, doctor, I must have gotten this sick somehow. I’m going to ask you a series of questions, and I want them answered on the spot, right now.

Patience has never been a virtue of mine, as many of my friends and family can attest to.

But I feel that I have been extremely patient with my doctors, maybe more than I should be.

I wasn’t planning to do an update until I received the final confirmation from my doctors,

but it seems like that won’t be happening anytime soon,

so I figured that no time is better than the present.

It’s been just about a month since my abnormal tests came back. I have left multiple messages for both doctors, one every week, hoping for a callback or at least an idea as to whether or not I need to come in for an appointment to discuss the test results in person.However, all I got was silence. I literally felt my blood boiling each day that went by that I didn’t receive a call. 

I’d whine about how:

“They’re delaying my care.”

“Sure, just because I’ve been sick forever, no reason to rush or anything.”

“I don’t know how doctors can get away with not calling when tests are abnormal.”

And, of course, the classic:

“I’m going to die before they ever figure out what this is.”

I was feeling sorry for myself, to say the least. I felt alone, abandoned, and lost as to what to do next. It was really starting to mess with my head. I hated being this way but I hated how these doctors were making me feel even more.

I felt like they were completely disregarding everything I have gone through

in my search for a diagnosis.

The years of life I have lost due to being sick.

The hours spent driving to appointments.

The amount of time in hospitals and doctor’s offices.

The high levels of radiation and all the discomfort in medical testing.

The countless pills prescribed, which often caused more side-effects than actual relief.

The procedures and surgeries, which also didn’t fix my disease.

The friends and family I lost, because they didn’t understand.

My career goals and aspirations that have been placed on hold.

Everything I once was and what I could be.

My whole life is on hold!

And here, right in front of you, are these abnormal tests

that provide answers to my chronic, undiagnosed illness

that I’ve fought so hard, for so long, to find

and you can’t pick up the phone to call me? 

Maybe I am being impractical,

but a month spent waiting seems way too long.

That’s a month to complete more testing or get second opinions.

Four weeks of treatment or management.

30 days of my life lost, left waiting.

FINALLY, a nurse from my GI, Rheumatologist/Immunologist, and Cardiologist’s office called, but she only caused  more confusion and frustration than before. She tells me my fecal cultures came back normal, which I already knew. She then says my cortisol levels were low (again, I’ve had my test results for weeks) and the doctor would like me to rerun it to be sure. She’s going to mail the paperwork so I can at least have my blood drawn in town, instead of driving over an hour. Great, thank you. She also tells me to stop taking my lupus medications… wait, what? The GI doctor and the Rheumatologist/Immunologist agree that I should stop taking them, because I’m not autoimmune. Um… ok. How come she originally, as did all the other doctors, think it was seronegative autoimmune disease? Specifically, Lupus?  I’m not in the mood to argue, I’ve been feeling terrible. I ask if I stop them forever, she says yes and the conversation is over.

She calls again yesterday, just to tell me to stop taking the Lupus medications… again. Yes, you told me the day before. Both doctors think it may be causing my painful and urgent diarrhea.Um, I have had on and off urgent diarrhea for… like… ever. But ok. So it’s not because it can’t possibly be autoimmune? I’m confused. She asks if the medication has helped. I said I’m over the initial side effects. I’ve had constipation for the past few days, so don’t think it’s causing diarrhea, and I haven’t had any extreme photosensitivity as in the past weeks, but still having outbreaks of rashes. I don’t know what is causing what anymore. My symptoms are too random and sporadic. She says to call next week or the week after, let them know if being off the medication makes me feel better or not, and then we will restart it if it’s not the problem. Wait… so let me get this straight? Now you’re taking me off it, to see if it’s having side effects I have had forever, only to restart it and have to adjust to it once again? Are you kidding me? Well, it may be affecting your cortisol levels, so they want to see if I stop it if it’ll change my blood test.  I am beyond confused and frustrated at this point. I went and redid my cortisol blood test this morning, so I guess we’ll just wait and see what that tells us.

Still haven’t gotten a call from the vascular surgeon. My CT Angiography was the one I was MOST worried about and  I fretted every night about him not calling me to discuss the findings. . Finally fed up, having left four messages now, I called and scheduled an appointment to discuss. I don’t know whether or not I trust him to treat at this point, given the lack of respect of promised phone calls with no answers, but he may just not know what to do or say about the finding. This is the doctor who didn’t believe in Nutcracker Syndrome at all for his own, valid reasoning, but admitted my original CT Scan showed the most convincing case of Nutcracker Syndrome that he has seen in over 30 years. He ran the CTA to “prove him wrong”. On the order form for the test, he even wrote “to exclude Nutcracker Syndrome”, instead of “evaluate for Nutcracker Syndrome”. He was really convinced I couldn’t have it, it’s too rare, and most vascular surgeons don’t think it’s a real thing.

Well, guess what? I proved him wrong. Not only that, they found two more (even rarer)  vascular compressions. The radiologist noted both May-Thurner Syndrome and Superior Mesenteric Artery Syndrome, although the Nutcracker Syndrome is the most extensive. So perhaps, maybe he is lost as to what to do or say at this point, I don’t know. But I’d rather him tell me that if that is, in fact, the case, rather than be silent about it. But I have an appointment now, so he can’t ignore me. So we’ll see how that goes.

I also had my consultation with cardiology last week. It had gone way better than expected and I really liked the doctor. He not only listened to me, he caught things other cardiologists had  missed in the past, and had my notes completed (and accurate) by the end of the day. I was fearful for this appointment, as I have not had the best luck with cardiologists in the past. They always say they hear a “murmur” or “valve issue”, order tests, and then call me crazy. This has happened on multiple occasions, both in my teens and early twenties. So you can see how I’d be nervous about going straight into an appointment saying “I think I have POTS syndrome and so does my neurologist and the immunologist (although she seems to have forgotten EVERYTHING she told me in my last appointment, so maybe she doesn’t think I do anymore, who knows)”. I show him the letter from the neurologist and my ‘poor man’s tilt table test’ results. He says that it looks like I have POTS, but he wanted to have some “orthostatic fun” in the office just to see. He measured my heart rate and blood pressure while laying down, sitting up, and standing.  Sure enough, my blood pressure dropped really low and my heart rate increased up to 150. Yep, he’s pretty convinced that it is POTS, but because of the missed information in previous cardio tests, he wants to rerun them again just to make sure it’s not something “easier” or misdiagnosed.

In my echocardiograms from 2005 and 2007,  he noticed that there was what he called “abnormal electricity” shown, but the EKG didn’t catch it, so it was dismissed. It happened again in my 3D echo from last year. Also, the 3D echo from 2014 showed I had pericarditis, which is a typical sign of autoimmune (particularly Lupus), but, of course, need to rule out other possible causes as well. And finally, my halter monitor from 2007 showed abnormalities and heart beats exceeding 160 bp, which was also dismissed during that time. So he ordered a 3D echo again, to see if the pericarditis has cleared on its own or if it’s gotten worse. He also wants to evaluate the possibility of a hole in my heart (which many people are born with, although it usually clears up on its own as you get older) since they can’t confirm the cause of my hypoxemia, other than the mild sleep apnea that was confirmed through my sleep study last year (although he doesn’t believe that is what is causing it, because again, it was very mild and happens sporadically during the daytime as well). So I’ll be back in the hospital tomorrow to complete all of these cardio tests. If  all the differential diagnoses are excluded, then he will be referring me to the dysautonomia clinic for further treatment, but was comfortable enough to put down Postural Orthostatic Tachycardia Syndrome as an official diagnosis. Again, something I have been saying since I started looking for answers. Finally! So we’ll see how testing goes tomorrow and I guess go from there.


So what does this all mean?

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It’s more than just ONE cause, obviously.

There are multiple conditions feeding off of one another, 

making my conditions not only rare,

but also complicated to treat and manage.

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Here’s what is on the table (so far):

Dysautonomia:

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More specifically —> Postural Orthostatic Tachycardia Syndrome (POTS):

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Nutcracker Syndrome:

“The nutcracker syndrome is quite a rare condition. It is due to the compression of the distal segment of the left renal vein (LRV) between the superior mesenteric artery (SMA) and the aorta (also called left renal vein entrapment).  This syndrome needs treatment when symptoms are disabling” (Hartung, O., 2009, p. 246).

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Superior Mesenteric Artery Syndrome (SMAS):

“Superior mesenteric artery syndrome (SMAS) is a digestive condition that occurs when the duodenum (the first part of the small intestine) is compressed between two arteries (the aorta and the superior mesenteric artery). This compression causes partial or complete blockage of the duodenum. Signs and symptoms may include abdominal fullness; bloating after meals; nausea and vomiting; and abdominal cramping that may be helped by lying in certain positions.” (NIH Office of Rare Diseases, 2014)

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May-Thurner Syndrome:

“May-Thurner syndrome (MTS) is caused when the left iliac vein is compressed by the right iliac artery, which increases the risk of deep vein thrombosis (DVT) in the left extremity. DVT is a blood clot that may partially or completely block blood flow through the vein. Even though DVT itself is not life-threatening, the blood clot has the potential to break free and travel through the bloodstream, where it can become lodged in the blood vessels of the lung (known as a pulmonary embolism). This can be a life-threatening condition” (ClevelandClinic.org)

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Symptoms and Causes of Low Cortisol Levels:

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A lower than normal level may indicate:

  • Addison disease, in which the adrenal glands do not produce enough cortisol
  • Hypopituitarism, in which the pituitary gland does not signal the adrenal gland to produce enough cortisol
  • Suppression of normal pituitary or adrenal function by glucocorticoid medications including pills, skin creams, eyedrops, inhalers, joint injections, chemotherapy

Other conditions for which the test may be ordered include:


Is this a final diagnosis?

Knowing how thing have gone in the past, it’s  highly doubtful.

Maybe there is more to the story…

Maybe there is less significance…

Only time will tell.

Again, I am left waiting…


Now if only I can get all my doctors organized and working together, maybe I can clear up what this all means and what needs to be done next. Surgery? Medications? Again, who knows… 

While I DO know for sure that NONE of these diagnoses will ever be “cured”, I’m hoping we can at least find a way to manage everything so I could hopefully live a semi-normal life again.

I still have to do a hydrogen/methane breath test next week, as well as upcoming appointments the week after with dermatology (to run biopsies on my skin rashes, hopefully to “catch” the autoimmune disease that’s hiding in my skin) and a follow-up with the vascular surgeon. Plus the results from the cortisol testing I did today and the cardio tests tomorrow. Let’s hope we can get the pieces put all together and figure out what’s next as far as treatment goes.

I guess I’ll just have to wait… something that is unfortunately becoming entirely too common at this point, but at least we’re getting somewhere… slowly. 

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