Should I Go to the Emergency Room or Wait It Out?

Lisa Weber avatar

by Lisa Weber |

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The pounding of my heart echoes clearly in my ears. I can see the thumps through the skin on my chest. It’s erratic, beating slowly and calmly one minute, and out of control the next. It’s like a toddler is in my chest playing a new set of drums — no rhythm, just a mix of a few gentle taps and bundles of bashing booms.

Throughout my life as a lab rat, I’ve had many tests done to my heart. Every six months, I go through procedures to study its pressures. So far, my ticker has been free from disease. But scleroderma can attack at any time. And when it does, it comes for my organs hard and fast.

The wild thumps of my heart have not been letting up, so I called my cardiologist to make an appointment.

“If your symptoms worsen or you feel like this is an emergency, head straight to the hospital. Otherwise, we’ll see you in three weeks.”

Putting this decision in my hands is like handing me the controls to the next space shuttle launch. News flash: I’m not a doctor!

Better safe than sorry

It may seem like a no-brainer — go to the emergency room and get checked out.

While I agree it’s better to be safe than sorry, there’s more to it for people with chronic illness. Every few months, my story repeats itself. A frightening symptom pops up and I go to the ER. They run all kinds of tests and send me home because they have absolutely no idea what’s causing the issue.

If you’ve ever seen the movie “Groundhog Day,” you can appreciate the frustration this brings. Reliving the same scenario over and over makes me hesitant to return.

Not an easy decision

The emotional strain this puts on my family is extremely upsetting. Every time I leave for the hospital, my entire family begins to panic. It’s a lot for my husband, children, and parents to handle. Although doctors are likely to send me home without answers, test results can sometimes take days. My children usually get kisses before bedtime every night, and they know when I’m not there.

Equally burdensome are the financial strains. I already meet my high insurance deductible every year, so we won’t be going on lavish vacations anytime soon. When I add in a few hospital stays, vacations are the least of our worries. Those charges pile up even with insurance. For the amount of money we shell out to the hospital, we should have a beachfront vacation home by now!

As you can see, it’s not as easy as “your life is more important than money.” In theory, that’s absolutely correct. But mortgage companies, grocery stores, and gas stations don’t care if you have exorbitant medical bills. Living costs money.

To make my choice even more arduous, every now and then that ER visit lands me in the hospital for a serious issue. Just seven months ago, I was rushed to the intensive care unit in critical condition. I suffered a major blood clot in the artery that runs from my heart to my brain. I had more than six strokes and lost some of my vision and sensation on the right side of my body. The worst part was that I had waited a week before going to the hospital. My choice to wait almost killed me.

Cautiously making the best decision

On one hand, I want to get peace of mind from amazing doctors. On the other, I want to spare my family the burdens of that choice. I fully understand that not going could lead to unimaginable heartache for my loved ones. The “what ifs” weigh heavily on my mind. That’s why I monitor my vitals carefully.

For now, I demanded an electrocardiogram at my doctor’s office to rule out a heart attack and other critical issues. While I couldn’t be seen by my doctor, the staff did call to let me know that my heart’s signals are strong, despite the palpitations.

I have a bag packed in case my symptoms worsen and I make a quick decision to go to the ER. I’ve also scheduled additional appointments and diagnostic tests with my heart specialist.

Lisa’s hospital bag is packed with warm socks, gloves, chargers, and basic hygiene products. (Photo by Lisa Weber)

This is my life. Scleroderma is unpredictable and relentless.

Making the decision to go to the emergency room can be extremely challenging for people living with chronic illness. If we went every time a frightening or painful symptom appeared, we would be permanent residents at the hospital. Worse, we might be called hypochondriacs.

Be patient with us. We have to battle our bodies every day. Support us while we make difficult decisions that affect us and our families emotionally and financially.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Ruth catchpole avatar

Ruth catchpole

This awful disease certainly needs more awareness, Its a waiting game a very painful one,

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Lisa Weber avatar

Lisa Weber

Ruth, that is spot on! Praying for a cure!

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freida rogers avatar

freida rogers

I rushed to the ER with an extremely rapid heartbeat and shortness of breath and was put in the waiting room by myself for 2 hours (WHICH SCARED ME). They found nothing wrong with me and sent me home after about 5 hours. I am afraid to go to the ER.

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Lisa Weber avatar

Lisa Weber

That’s definitely frightening, Freida! Being sent home is a good thing, but it certainly makes you hesitant to go back the next time.

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Lisa Lundquist avatar

Lisa Lundquist

Hi Lisa....I think going to the ER for heart and breathing issues makes perfect sense. I really feel for you on making those decisions though. I have just recently found a pattern for myself with the rapid heartbeat. I believe my symptoms are triggered by hormone fluctuations and my cycle. I have started taking a hormone balancing herbal tincture two weeks before my cycle and so far...no more wild palpitations. See if you can find a pattern when you have them. We have to come at this as a team -dont we!

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Lisa Weber avatar

Lisa Weber

Thank you for the suggestion, Lisa. I will keep track of it. I’m so happy you found relief. It really takes a village to get through life with this disease.

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Ranel avatar

Ranel

I just came home from a 5 day hospital stay after debating for half a day of debating..”should I go?” The 8 hour stay in the freezing ER before getting a room was enough to make me more miserable. I almost felt like ER docs thought I was overacting. Let alone friends who are used to people getting sick then getting better. I, as you all know, don’t ever get “cured”.

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Lisa Weber avatar

Lisa Weber

Ranel, you are so right about not coming home healed. It actually took me a long time to fully grasp that concept. Im glad you’re home. Stay warm and keep fighting!

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Doralee avatar

Doralee

I’ve been to the ER more times than I can count at this point. I’m forced in due to the gastrointestinal issues that are caused when my system becomes paralyzed due to my scleroderma. The guilt I feel every time I put my husband through this process with me is as painful as the episode itself. It is indeed part of the battle!

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Lisa Weber avatar

Lisa Weber

Doralee, everything about this disease is hard. I’m glad you have your husband by your side. Keep reminding yourself that you’re not doing this to him, scleroderma is.

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Dannette Adams avatar

Dannette Adams

I have never thought to go to the hospital, I remain home when the flare up comes on. The mental part of this is very heavy for me. Recently diagnosed with Raynard’s and Sclerodactyly as well as hearing there is no medication to help with it. No cure I feel so helpless and sad.

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Dannette avatar

Dannette

I have never thought to go to the hospital, I remain home when the flare up comes on. The mental part of this is very heavy for me. Recently diagnosed with Raynard’s and Sclerodactyly as well as hearing there is no medication to help with it. No cure I feel so helpless and sad.

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Lisa Weber avatar

Lisa Weber

Oh Dannette, I’m sorry to hear that you’re feeling helpless and sad. Find ways to stay positive and to be grateful you’re still here with us. I do believe a cure is coming! And new medications are always becoming available. Stay on top of news and bring ideas to your doctors. You’ve got this!

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Catherine avatar

Catherine

Lisa, you inspire me to keep going every time I read about you!!!!!

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Lisa Weber avatar

Lisa Weber

I’m so happy to hear that my columns help, Catherine! You’ve got this! Stay strong and keep going.

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margitta avatar

margitta

Hi Lisa,
another brilliant article! I think about you sometimes, hoping you keep up your strengst and keep you in my prayers. Did you see the Niagara Falls lit up for ss awareness ? How beautiful.
Er - I have been sent home by docs telling me they know nothing about autoimmune diseases. After the usual intake tests, nothing could be seen other than I am just fine. You are sooo right, its hard for us hypocondriacs!!

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Lisa Weber avatar

Lisa Weber

Hi Margitta! How are you doing? I didn’t know they lit the falls again! I saw it a few years ago and it made me so emotional. It’s a beautiful way to bring awareness. I’m sorry you got the “you’re fine” response from doctors. That’s so frustrating! Don’t we wish that was the case! But then again, all these little challenges make us stronger. It was good to hear from you again! Still praying for you too!

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Sonny Amiri avatar

Sonny Amiri

Hi Lisa, I am a male in my high sixties who has been diagnosed with scleroderma for over a decade. Well written article! I sometimes struggle with ER decision making too. As young as you are I am sure you will see a cure way before getting as old as I am! 😊 Just continue being positive and keep hope alive! Meanwhile continue enjoying life and your beautiful daughters and nice husband as much as you can because scleroderma or not time will fly by very fast! ❤❤😘😘

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Lisa Weber avatar

Lisa Weber

You are so right, Sonny! Life goes by so quickly and it’s important to make the best of it! Thank you for the reminder and encouragement! Wishing you lots of good days!

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Alma C Alsip avatar

Alma C Alsip

I can relate to these comments too. I was diagnosed in 1995, but had it years before it was identified. It has caused many other health problems, I'm now 74 with severe myopathy, raynauds among others, I too stuggle about seeking the ER, but prayers helps and God is faithful, so I put my trust in Him to know when I should or shouldn't go. Prayers for all.

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Lisa Weber avatar

Lisa Weber

You are so right Alma! I also find it helpful to put it in God’s hands. The hard part is being patient and silent so I can see/hear his signs. Praying for a cure for us all!

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Lois Bouchard avatar

Lois Bouchard

Dear Lisa, Thank you for your article. SS has affected my heart with microvascular disease and shortness of breath. Have had debilitating heart episodes of chest pain and pressure they think is A Fib. Last one went into a small stroke. Also have bradycardia. Most tests come back normal so they did implant heart monitor. Can you tell me if you have any of these symptoms or what the docs have told as to why you had your strokes and palpitations. How is Scleroderma affecting your heart. Did they suggest a heart monitor?

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Lisa Weber avatar

Lisa Weber

Lois, it sounds like we are experiencing a lot of the same things- right down to the fact that they have no clue what's going on yet. They are still running lots of tests and figuring it out. At this point they are doing a Cardiopulmonary Exercise Test, a Right Heart Cath with Exercise, and a Left Heart Cath to look at the vessels. As soon as they figure it out, I will share what I know! Please do the same. It's tough being undiagnosed, but we are not alone if we stick together! Best wished to you.

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Lois Bouchard avatar

Lois Bouchard

Dear Lisa, I also had a right heart cath done with exercise almost 3 years ago at MUSC Charleston with normal results. Five years ago, I had a left heart cath done with clean arteries and was told then of Micro Vascular Disease (before diagnosed with SSc). We now know that SSc causes MVD which leads to fibrosis. Last echo 4 months ago showed 'moderately enlarged' left atrium and high ejection fraction of 74% from the left ventricle. My right heart systolic pressure has doubled to 29 mmHg from three year years prior of 15mmHg. This is all related: as to the left atrium/left ventricle and now more pressure in the right ventricle. I read a lot of research papers and it describes fibrosis and A-Fib as contributing factors to an enlarged left atrium. Fibrosis can also cause thickening of the heart wall causing stiffness in pumping and smaller chamber size, not allowing enough blood to enter the left ventricle from the atrium which in turn causes a high ejection fraction. This is called left ventricle hypertrophy. I also believe the scarring/fibrosis is affecting my heart rhythm slowing it down causing bradycardia (43 - 120 bpm ). Resting heart beat is now 50bpm. I purchased a smart watch and it tells me my heart beat range and resting bpm. It can also check for A-Fib. It is actually very helpful/informative. I believe it all stems from SS attacking the Micro vascular which leads to the fibrosis, thus arrhythmias like A-Fib which led into my stroke. If you like to email me privately please do: [email protected] Please keep me updated.

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Lisa Weber avatar

Lisa Weber

Thank you Lois! I took a picture of your reply and will be discussing this with my cardiologist in just a few days! I really appreciate you taking the time to give me this information. It takes a village and we need to stick together- that way we aren't so rare! Best wishes to you!

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