Another test, another diagnosis

Life is still crazy,

but I promised updates on some of my more recent medical testing.

One of the tests I put off doing for the longest time but finally got around to was the Hydrogen-Methane Breath to check for Small Intestinal Bacterial Overgrowth (SIBO). I figured I had it anyways, as almost every person diagnosed with Irritable Bowel Syndrome has it in some way, shape, or form but figured the other testing was more important. Not to mention, every time I actually DID schedule it, something would keep me from going.

For instance, the first time I was too sick to move from bed let alone drive an hour and a half, spend 3 hours doing the test, and then an hour and a half back home. The second time, the foster dog swallowed a stuffed toy and needed to go to the vet. Then on the third attempt, a jeep caught on fire and shut down the highway. 

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I was beginning to think that this test was cursed and I would never get it done,

but I finally made it last month.


THE HYDROGEN/METHANE BREATH TEST:

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“The hydrogen/methane breath test is a test that uses the measurement of hydrogen and methane in the breath to diagnose several conditions that cause gastrointestinal symptoms.

Large amounts of hydrogen may be produced where there is a problem with the digestion or absorption of food in the small intestine that allows more unabsorbed food to reach the colon or when the colon bacteria move back into the small intestine. Some of the hydrogen produced by the bacteria, whether in the small intestine or the colon, is absorbed into the blood flowing through the wall of the small intestine and colon. The hydrogen-containing blood travels to the lungs where the hydrogen is released and exhaled in the breath where it can be measured” (NJH, 2015).

It used to be that only hydrogen levels were tested to diagnose SIBO but recent studies have shown that measuring methane levels are just as important because some patients only produce methane (instead of hydrogen) and some patients produce both hydrogen and methane, so many people were receiving false negatives when only hydrogen was being measured. According to Costello, Ledochowski, & Ratcliffe (2013), “there are patients who can suffer from the same spectrum of malabsorption issues but who produce little or no hydrogen, instead producing relatively large amounts of methane. These patients will avoid detection with the traditional breath test for malabsorption based on hydrogen detection. Likewise the hydrogen breath test is an established method for small intestinal bacterial overgrowth (SIBO) diagnoses. Therefore, a number of false negatives would be expected for patients who solely produce methane. Usually patients produce either hydrogen or methane, and only rarely there are significant co-producers, as typically the methane is produced at the expense of hydrogen by microbial conversion of carbon dioxide. Various studies show that methanogens occur in about a third of all adult humans; therefore, there is significant potential for malabsorbers to remain undiagnosed if a simple hydrogen breath test is used” (p. 1).

Still, the  physiopathology of SIBO is both complicated and widely misunderstood. 

My doctor ordered for both to be measured, just to be sure.

WHEN IS HYDROGEN BREATH TESTING USED?

“The first condition for which hydrogen breath testing is used is for diagnosing bacterial overgrowth of the small bowel, a condition in which larger-than-normal numbers of colonic bacteria are present in the small intestine.

The second condition for which hydrogen breath testing is used is when dietary sugars are not digested normally. The most common sugar that is poorly digested is lactose, the sugar in milk. Individuals who are unable to properly digest lactose are referred to as lactose intolerant.

The third condition for which hydrogen breath testing is used is for diagnosing rapid passage of food through the small intestine.

All three of these conditions may cause abdominal pain, abdominal bloating and distention, flatulence (passing gas in large amounts) and diarrhea” (NJH, 2015).

POTENTIAL SIDE EFFECTS:

“The side effects of hydrogen breath testing are exactly what one would expect to see in people who poorly digest and absorb sugars and carbohydrates, for example, bloating, distention, pain and diarrhea. When the test sugar is used these symptoms are unlikely to occur or are mild because the dose of the test sugar is small” (NJH, 2015).


So What the heck is SIBO?

“We have over 100 trillion bacterial organisms in our gut. The range and species vary depending on the area of the gastrointestinal tract. While the large intestine has around 10-100 billion bacteria organisms per teaspoon of fluid, the small intestine only has around 100 thousand organisms. It’s when there’s an overgrowth of bacteria that is prevalent in the small intestine (where there isn’t supposed to be much bacteria) when problems arise.

So, it’s more a case of bacteria growing in the wrong place… and it could be good bacteria or it could be bad bacteria.

The majority of SIBO is most likely due to chronic stress.

There’s also research pointing to acute gastroenteritis from things like H. pylori, food poisoning, or plain gut irritation causing changes in gut nerves, altering motility (how things move), and triggering bacterial overgrowth” (Reasoner, 2015).

“The primary symptoms of SIBO are similar to IBS symptoms, including:

  • Abdominal bloating
  • Belching
  • Gas
  • Abdominal pain
  • Cramping
  • Constipation
  • and Diarrhea

Leaky gut symptoms are also a big sign of SIBO. These can range from food sensitivities to headaches, fatigue, skin issues, mood issues, asthma, and joint pain.

In addition, fructose malabsorption, anemia, weight loss, and steatorrhea (fatty stools) can also be red flags for SIBO” (Reasoner, 2015).

What are the causes?

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original

Fig1ibs

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I had trouble understanding why this test was important, mainly because of the fact that there is just a ton of the crap information available on the internet. Thousands and thousands of articles, mostly from so-called “health professionals” with different protocols and ways to “CURE SIBO” or “CURE LEAKY GUT”. And they all contradicted one another. It was frustrating weeding through actual fact and sites just trying to sell you some random supplement.

Also, I wanted concrete evidence that this diagnosis wasn’t another cop out by my doctors (like I personally believe IBS is). All the scientific evidence I found in peer reviewed literature continued the debates on the effectiveness of treatment, the impact it causes for patients, and the accuracy of the breath test. In the end, however, my GI doctor insisted that it was necessary and she’s very much pro-science and medicine (not holistic at all), so I obliged.


The hardest part of the whole test, honestly, is the following the preparation diet.

Especially the NO-COFFEE rule (at least for me).

The prep:

“To ensure the best results for your test, follow these instructions carefully and completely.

  • Twenty-four (24) hours before your test, stop eating all grains (including pasta, bread and cereals), all fruits, all vegetables including any products that contain corn, , all nuts, seeds and beans, all dairy products (including cheese, ice cream, butter and yogurt) and all meats. You may have the following foods:
    • Baked or broiled chicken or turkey or fish with salt and pepper only,
    • Plain, steamed white rice,
    • Eggs, and
    • Clear chicken or beef broth and
    • Water only to drink.
  • You must adhere to the above diet to ensure an accurate test.
  •  Twelve hours before your test, you may have nothing by mouth, except water. You may take your oral medicines with water.
  • You may not smoke or be exposed to second-hand smoke at least 1 hour before and not any time during the test.
  • You may not sleep or do any vigorous exercise for at least 1 hour before your test.
  • Inform your health care provider in advance if you have recently used antibiotics. You will need to stop all antibiotics four weeks before your test.
  • Inform your health care provider in advance if you have had a recent colonoscopy. Your test will need to be scheduled at least three weeks after a colonoscopy
  • Inform your health care provider if you are taking probiotics. You will need to stop taking probiotics 2 weeks before your test.
  • Inform your care provider if you have experienced new runny diarrhea.
  • If you are diabetic and take Insulin, talk with the doctor who prescribes your Insulin about reducing the dose the day of the exam.
  • If you are diabetic, please bring your glucose meter, test strips, and a source of fast-acting glucose with you (such as glucose tablets or glucose gel).
  • Please bring reading materials or your electronic devices with you because you will be in the procedure area for about 3 hours ” (NJH, 2015).

WHAT HAPPENS DURING THE

HYDROGEN BREATH TEST?

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“Depending on the purpose of the test, you will drink a small amount of a test sugar (such as lactose, sucrose, fructose, or lactulose).

You will then blow air into a bag at designated times for 3 hours. A nurse will analyze these breath samples” (NJH, 2015).

I drank the lactulose solution. Surprisingly, it wasn’t that bad because the syrup itself is absorbed in a glass of water. My nurse that day told me that they give straight lactulose to patients in the hospital that are constipated, causing them to experiences bouts of diarrhea. I prepared myself for the worst but had no problems, thankfully, during the three hour testing or on the drive home.

That night, however, was a different story.

I had to blow into the bag every 20 minutes. I also reset the timer myself after filling the bag because it would take anywhere from 1-5 minutes for the nurses to retrieve the bag to measure it, which over time can make the test last much longer as they want to get a total of 10 readings.

My test ran the full 3 hours – definitely bring things to do because it IS boring. No sleeping, no eating/drinking, no excessive movement allowed or you’ll influence the test results.

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BreathTracker


Since I had nothing better to do during this time, I decided to keep track of my measurements while in the hospital testing so I can get an idea (in general) of if my test would be either positive or negative. 

I found this info prior to my appointment for general guidance:

“Interpretation of the test may vary widely among practitioners. There is no agreed-upon criteria, a situation which we hope to see remedied. It’s very possible that a patient may be considered positive by one doctor/lab and negative by another. The criteria provided by the machine manufacturer for a positive test are as follows:8

• A rise over lowest preceding value in hydrogen production of 20 parts per million (ppm) or greater within 120 minutes after ingesting lactulose

• A rise over lowest preceding value in methane production of 12 ppm or greater within 120 minutes after ingesting lactulose

• A rise over lowest preceding value in the combined sum of hydrogen and methane production of 15 ppm or greater within 120 minutes after ingesting lactulose

We have found that an absolute level of gases at or above the positive ppm levels provided by QuinTron, without a rise over baseline or lowest preceding value, correlates well with clinical SIBO. This is especially true for methane gas, which can have a pattern of an elevated baseline (> 12 ppm) that remains elevated for the duration of the test (Figure 1). In cases such as these, methane may only rise 5 ppm, but the ppm level is consistently above the positive cutoff. Interpretation of elevated hydrogen or methane on the baseline specimen (pre-lactulose ingestion) is controversial, but we prefer to consider a high baseline value to be a positive test9, 10 (Figure 2) unless gas levels fall after baseline and continue to diminish or remain low during the first 2 hours, indicating improper prep diet (Figures 3 and 3.5).

Image 1

The classic positive for SIBO has been considered to be a double peak, with the first peak representing the SIBO and the second peak representing the normal abundance of large intestine bacteria (Figure 4). This is an infrequent presentation in our experience. More often we see 1 peak which rises even higher in the third hour, representing distal SIBO followed by the normal large intestine bacteria (Figure 5).

Image 2

If the measured gases do not rise until after 120 minutes, it is possible that this is due to a prolonged transit time, which we have seen in patients with severe constipation. In such a patient with the expected symptom picture for constipation-type SIBO, a significant rise at 140 minutes may be interpreted as a positive test (Figure 6). Figure 7 represents a negative test; note the scale on the left of the graph is reduced to reflect the lower gas levels. Figures 1 through 7 are case examples provided by NCNM’s lab”

Image 3

(Siebecker & Sandburg-Lewis, 2014).

My self-reported results:

Time (Minutes) Baseline 20 40 60 80 100
Hydrogen 2 6 13 33 73 57
Methane 10 13 20 21 29 31
Mean of Both 6 9.5 23 27 51 72.5

*I got bored after the 6th reading and stopped writing them down, but I knew based on the increase in hydrogen (over 20 ppm) and methane of over (12ppm), more than likely, it was positive.

Doctor’s final Report:

PROCEDURE:
Breath hydrogen study for small intestinal bacterial overgrowth.
U.S. News & World Report
METHOD:
The patient was given oral lactulose and breath samples were obtained every 20 minutes for three hours.
FINDINGS:
The baseline breath hydrogen level was 2 parts per million and peaked at 73 parts per million at 80 minutes, began
to decline with a slight peak again at 140 minutes and 180 minutes. The baseline breath methane level was 10 parts
per million, peaked at 31 parts per million at 100 minutes, slowly declining had a slight peak again at 180 minutes.
CONCLUSION:
This study is consistent with small intestinal bacterial overgrowth.


So yes, yet another diagnosis. I will be starting the antibiotic Xifaxan 500mg, 3 times a day for 14 days, but I’ve heard getting rid of SIBO is difficult and complicated – similar to Lyme Disease (and supposedly there is “die-off” or “hexing” like Lyme as well – but again, so much junk on the internet, who knows). Luckily, my insurance covered treatment with no problem. Most people have to fight the insurance company or pay full price, which can be close to $1,000 for one round. It may take a multiple rounds, depending. So we’ll see if it helps at all.

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Meanwhile, I’m still testing and going to appointments every week.

More updates to come soon.


References:

Costello, Ledochowski, & Ratcliffe (2013). The importance of methane breath testing: A review. Journal of Breath Research, 7, 1-8. doi:10.1088/1752-7155/7/2/024001

Ku, M.Y. (2015). Hydrogen methane breath test. National Jewish Health.Retrieved on October 29, 2015 from http://www.nationaljewish.org/programs/tests/gastroenterology/hydrogen-methane-breath-test.

Reasoner, J. (2015) Everything You Need to Know About SIBO (Small Intestinal Bacterial Overgrowth). Retrieved on Octoberer 21, 2015 from http://scdlifestyle.com/2014/01/everything-you-need-to-know-about-sibo-small-intestinal-bacterial-overgrowth/

Siebecker, A. & Sandburg-Lewis, S. (2014). SIBO: The Finer Points of Diagnosis, Test Interpretation, and Treatment. Retrieved on October 29, 2015 from http://ndnr.com/gastrointestinal/sibo/

DISCLOSURE:

I AM NOT A MEDICAL DOCTOR, NOR DO I HAVE A LICENSE TO PRACTICE MEDICINE. THE INFORMATION PROVIDED ABOVE IS INTENDED FOR EDUCATIONAL PURPOSES ONLY.

ALWAYS FOLLOW THE ADVICE OF YOUR TREATING PHYSICIAN.

Feeling kind of fragile lately, I know only I can save me now…

“Fragile, Quiet
Feels like I’m dying
Crystal waters
Pulling me under
My rage is like thunder”

(Jennifer Marks – Lyrics Below)


Lately,

I feel the universe is testing me

To see if I will break…

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What do you do when you can’t do it all?
When everything is extremely important and none of it can be eliminated?
And all of it is time sensitive?

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 It feels like it’s never going to end.

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But so much has happened, and is happening

in both my life and my health.

I’ve been waiting for a free moment to update,

but I don’t even know where to start.


No Sleep September 

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Wasn’t able to sleep for weeks all through September, although it seemed to run into the first week of October. No idea why, I just suddenly became “nocturnal”.  I would be wide awake until about 10 am before I would then crash out until about 5 or 6 pm. I tried forcing myself to stay up, hoping I’d fall asleep early, but even that didn’t work. Again, I wouldn’t get tired to 10 am and would be “stuck” awake for 2-3 days. It was awful.

I am FINALLY back to sleeping at night, but now all I want to do is sleep. No amount of caffeine seems to fix my tiredness. I talked to a few of my doctors about it and none of them really seemed too worried about it except for my therapist. I guess we’ll see how the next few weeks go and bring it up again at my follow-up appointments, but I’m really worried how drastically my sleep patterns have changed.

The ups and downs with doctors

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Gastroenterology

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I had a follow up with my GI doc mid-September. After meeting with vascular surgery and the lack of medical evidence from the last few rounds of GI testing, I assumed we were pretty much done. Boy, was I wrong.

Despite reviewing the update from the vascular surgeon, she wanted to order even more testing. Excuse me, what? I wasn’t happy, to say the least. Especially because a few of the ones she ordered were ones I’ve already had in the past that all came back normal, not to mention that every GI test involves some sort of pain or torture.I also really don’t want to do them again, but she wanted to see if there is any change between then and now, especially with confirmation of Superior Mesenteric Artery Syndrome (SMAS) now. Plus, she talked with the vascular surgeon and convinced them that I needed to redo the upper GI series/small bowel follow through, even though he said it wasn’t necessary. This test, out of all the medical tests I’ve ever had, has been nemesis since early childhood. Even now, I cringe thinking about it.

Really, though, I have been having medical testing multiple times a week since February and frankly, I’m just tired. But if I decline to do them, then I am a “noncompliant patient” and it could affect my disability claims. *Sigh* There’s no winning, so here I am, yet again.

Vascular Surgery

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I was excited for my follow with the vascular surgeon with how well our consult went the month before and was ready to get a game plan going to treat the vascular compression syndromes. Originally, I was scheduled for an afternoon venogram that day to measure the pressure of blood flow in the veins that were compressed and see if they could confirm a diagnosis of pelvic congestion syndrome. I should have known that the plan could potentially change (especially after he changed his mind on needing additional GI testing), but he seemed so confident at our consult that I didn’t even give it a second thought. Wrong again.

A week or so before my appointment, I received a call from the same hospital asking to schedule with Dr. So-And-So. I had no idea who Dr. So-And-So was. His receptionist explained that he was a GI surgeon that my vascular surgeon called to set up a consult with because he will be assisting in my surgery. MY SURGERY?!?!?! It was news to me, but I scheduled anyways. I think to myself, FINALLY! We’re going to do something. I was both excited and petrified at the same time, especially given the potential severity and risks (depending on which type of surgery they were looking at doing).

I started making lists of things to get myself ready, reading about the pros and cons of each procedure, etc. I even made it Facebook official:

September 22:

I just got a call from the GI surgeon at University. The Vascular Surgeon called him to see if he could assist with surgery, so I have my consult end of October. Looks like we’re going in to fix the SMAS, Nutcracker, and May-Thurner all at once.

I’m petrified and ecstatic all at once. I’ll have to wait until all testing and consults are done to see if they are stenting the veins or completely “rerouting” them. Huge difference in recovery time. From what I hear full recovery isn’t guaranteed or it can fail entirely, but this is my only shot of ever feeling better.
Hoping for surgery around Christmas.

Essentially, overplanning like I usually do. Then I realized, I didn’t receive the document about prep instructions for the venogram in the mail as I expected. I decided to call back to the hospital to see what I needed to do. Good thing I called, though, because they didn’t schedule me for a venogram like I was told during my consult. It was just a follow-up appointment. Um, okay… I thought maybe they found something different during their medical conference, where they were going to review my scans again to make sure nothing had been missed. I was even more anxious for the follow-up now.

The day of the appointment, we drive the hour and a half up there and we’re almost late because traffic was horrible. I hadn’t slept well the night before at all, but I just really wanted to know what was going on with surgery. For some reason, I just had a really bad feeling  – it wasn’t until the appointment was over that I figured out why. We meet with a student, who takes the basic info about how I am doing and how literally nothing had changed since our first meeting together.

The doctor comes in a few minutes later and says that he thought all my testing that was recently ordered through my GI doctor (at another hospital, I might add) would have been done by now. Nope, we JUST got it scheduled. He says there’s nothing to really go over until all that’s done. So, then this appointment is a waste of time? Basically – Sorry that no one called to verify. I’m speechless. I ask him why we needed the tests run again – just to see if there is anything else it could be. Wait, are we NOT sure anymore? Well, we know that the compressions are there, but we don’t want to make it worse with surgery if something else could possibly be causing your symptoms. What happened with doing the venogram? I’m okay with scheduling that but if the tests show something else, then we can pursue that first. Then why are you sending me for a surgery consult with your colleague, who is supposed to assist in the surgery that  you don’t want to do because it could potentially make my symptoms worse? 

I didn’t say the last part, of course, but I left my appointment both angry and frustrated yet again. I’m so tired of doctors changing their minds on what they want to do. So far, all they keep doing is running medical test after medical test, not providing any treatment.It just feels like a giant waste of time. I came home and vented about this on one of the support group pages I follow and I’m pretty sure that  someone pinpointed exactly why this doctor changed his mind so suddenly. It’s happened to her too, multiple times. Because of the complexity of the surgeries, on top of the fact that it would be multiple interventions at a time and with more than one doctor performing, they get “scared” to “make it worse”. They begin stalling by ordering more tests or try this medication, even though it’s already been done – just to buy time. To me, it makes sense, although I can never prove it.

My venogram is actually scheduled now for December 3 after my continuous testing supposedly ends. We’ll see if that even happens. If it doesn’t, I don’t know what I’ll do at this point.

A new Primary Care doctor

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In the midst of all the other doctor drama, I also had to begin my search once again for a new primary care doctor. If you remember from early posts (And it’s a sad pictureSay something, I’m giving up on you, I know the shame in your defeat or Oh doctor, doctor), finding a GOOD primary care doctor has been the biggest challenge in my quest of finding a diagnosis. There’s something in this town that make doctors… oh, what’s the word?  oh yeah… WORTHLESS. Which is why I travel so far to see specialists, despite living in a relatively large city. But seeing as my past PCP disappeared out of nowhere, I had no choice but to find a new primary care physician (although to be honest – I only stayed with her out of convenience, despite that she worked in the worst medical office consisting of the rudest staff to I’ve encountered to date).

Earlier in the year when I had tried to find a new doctor, I originally called a clinic that ended up not taking my insurance, but the receptionist who answered actually was on the same insurance plan. She told me to try one specific clinic because they were great and she had felt my frustration with quite a few of the other doctors in town. Glad it’s not just me. However, after the fiasco with the few offices I had tried back in the Spring, I was too worn out to try and find a new doctor, so I never called them. Luckily, I kept their number, though.

I was so worried about having to go through this process again and I really worked myself up about seeing a new doctor. But ultimately, he turned out to be better than expected. The clinic was both clean and nice. The receptionists were friendly and organized as well, which was a huge difference from the last practice. The wait wasn’t too long and the doctor spent a great deal of time with me, learning about my diagnoses, comparing “expected symptoms and treatment” to my own personal experiences, and he actually did an exam. He asked me if there was anything else I needed him to do, to which I replied I had short-term disability and work paperwork that I needed to have filled out because they wanted me back at work following this appointment (which had been stressing me out over the last few weeks, to say the least).

What amazed me, though, was the fact that he refused to fill them out. Instead, he wrote them a letter saying that I am really sick with multiple complicated diagnoses and it could take a while to get a treatment plan going before I will be well enough to work again. I was in shock. He believed me! I can’t even put into words how grateful I am for him taking the time to sit down with me and listen to what I had to say. He scheduled me for a follow-up in a month just to see how things are progressing with my specialists and ordered my general, yearly bloodwork to make sure nothing is missed along the way. I’m so glad to finally have a good doctor that is also close to home.

Work and disability

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Off the advice of my therapist, I decided to start my social security disability claim over the summer just in case I wasn’t able to get back to work as fast as I had originally thought. It was a good thing I did since I currently have no expected return to work date now. So far, the process hasn’t been too bad. However, a few weeks ago, I received a letter in the mail stating I was being sent for a psychiatric evaluation. I was stunned and worried. Did they think it is all in my head? Do they think I’m lying about my symptoms? why are they doing this? Needless to say, I was worried. I talked with my therapist about the neuropsychologist that was doing my mental comprehensive exam with, and she, unfortunately, didn’t have the best news for me since she was familiar with him. Great. Again, I overprepared myself with tons of documents and information to bring to the exam, especially since she told me to bring proof of a diagnosis so he doesn’t label me as having a somatization disorder. But, overall, I think the appointment went well. Despite the fact that he wasn’t exceptionally outgoing or friendly, he seemed to identify with my answers to his questions and stated that I was very pleasant and intelligent. So I am hoping this appointment helped my case, instead of hurting it. Still, I worry about my future without disability at this point, especially considering that the number of appointments and testing don’t look like they’ll be decreasing any time soon.

Later in the afternoon, following my appointment for the CE exam, I received a call from my manager at work. As soon as I picked up, I knew something was wrong. He conferenced in a woman from the human resources department and instantly I knew – I was getting fired. I held back my tears as they advised me that since I had no expected return date that they would need to let me go because of business needs. I was heartbroken, but I understood. Still, it didn’t stop oncoming fear and panic inside me. My thoughts were racing through my head. I felt like I couldn’t breath.

What am I going to do?

I’ve never been fired from a job before.

How is this going to affect my short-term disability claim?

Or the long-term disability claim that was just initiated the day before?

How am I going to live? or survive?

We need to renew our lease next month…

What am I going to do?

I was beside myself. More importantly, I was ashamed. Up until now, I could still say I had an amazing job and that I was just on medical leave. Now I’m just unemployed. I have worked consistently since the age of 15, no matter the symptoms but only started having real trouble with maintaining work this past December when symptoms got out of control. I felt like a failure. Luckily, though, I am still eligible to continue my short-term disability benefits and finish my long-term disability application since I was on medical leave during my termination. Still, so much more has been lost than gained and it’s been difficult to remain positive.

To top it all off, getting fired has added even more work for because now I have to write  a letter to each and every state asking to return my insurance licenses so that I don’t receive fines for not continuing education or fees, in addition to the separation paperwork, returning equipment, moving and changing all of my policies. And remember, I still have all of these doctors appointments and medical testing scheduled multiple times a week, maintaining my current STD claim, finishing up the paperwork and processing for both SSDI and LTD, and finals for school. I’m about to pull what little left of hair I have left out of my head, I swear. But somehow, like everything else, it will get done. I’m just not sure how to do it all exactly, but I have no choice but to find a way.

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And last but definitely not least, 

I received yet another diagnosis.

But seeing as this post is already too long, on top of the fact that I am exhausted from all that has been going on, I’ll update this information with more specific posts on some of the medical testing I’ve been going through. Thank you all for listening and allowing me to vent about everything going on. In the meantime, I’ll try not to let all of this bother me,  although that is easier said than done. I just need to focus and get it all done the best  that I can. Really, it’s the only thing I can do.

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Fragile by Jennifer Marks

There’s a hole at the bottom of this cup
I want to fix it so I can fill it up
There is sand where the flowers used to be
I was happy then and you were here with me

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of fragile

There is dust in the seat where you once sat
Time is cruel it’s too stubborn to turn back
My heart’s so heavy it will never float
I’m holding on, cause I’m afraid to let go

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of …

Fragile, Quiet
Feels like I’m dying
Crystal waters
Pulling me under
My rage is like thunder

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of fragile.

Invisible Illness Week and Updates

It’s almost here!

September 28-Oct 4, 2015 is Invisible Illness Awareness Week.

2015’s theme is MY INVISIBLE FIGHT.

Your fight is noticed. You are seen. You matter. And someone knows how hard you are trying.

When we fight daily, silently, without any signs of our battle it can be exhausting. Join others who also battle invisible illnesses and increase awareness at the same time.

This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including some chat sessions with special guests.

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses.

I’ll be sharing My Invisible Fight. 

Will you?

In addition to blogging, the Undiagnosed Warrior Facebook Page will be filled with even more fun, including updates, shares, pictures, stories, and more. To join, follow me at https://www.facebook.com/undiagnosedwarrior.

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For more information see InvisibleIllnessWeek.com



Undiagnosed Warrior is going through some page updates as well.

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Please be patient as I add additional tips and research to the page.

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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