What is normal anyway
We have all been to the Doctor and heard that phrase, “everything checks out normal!” So what does that term “normal” mean? Usual, typical, expected...that’s what normal means. Let me ask you this, how is a Doctor supposed to know what is normal for you? This can be different for everyone, so they go by textbook guidelines. Many times forgetting that your normal may not be textbook at all. I strongly believe that in all cases if a patient feels symptomatic, then a Doctor should be realizing that the results might not be normal for this individual. What factors can alter your normal, well, pretty much anything can from environment to medical. I think this is why I feel like I’m not being heard when I am told that, “ everything checks out normal.”
Ankylosis Spondylitis and the heart
Not everyone knows that AS can can have an impact on the heart, and the ones that do, don’t always know to what extent that could be. I think it’s important to know the details, as well as family history and personal medical state of health. Here are some facts for you to consider. Family history, AS, and lifestyle can all leave you at an increased risk. Only 2-10% of people with AS will develop heart problems, kind of makes you feel a little better seeing that number doesn’t it? What if you are having heart issues? If that’s the case, we are looking at a different set of numbers. A common drug family used to treat AS, NSAIDS puts you at an increased risk 2 to 4 times of having a heart attack, stroke or cardiovascular death, especially long term use. You have a 25% increased risk for Storke. A 37% increase risk of Ischemic Heart Disease. A 58% increased risk of Valvular Disease. Those numbers are a little more difficult to take than 2-10%! The largest group impacted by this are woman between the ages of 20-39 years of age.
What can AS do to the heart
AS can lead to many different issues with the heart, some of which don’t require any medical intervention and some of which could lead to life long monitoring or surgery and then of course, sudden cardiac death. Aoritis is inflammation of the aorta and could be minor, or more serious. Aortic Valve Disease can cause narrowing of the valve, regurgitation or back flow of the blood in the heart or even a faulty valve. Conduction disturbances can also occur, causing tachycardia or bradycardia. Cardiomyopathy is heart muscle disease, Ischemic Heart Disease is coronary artery disease. Costrochonditis is inflammation of the cartridge that connects a rib to the breastbone. Then finally Stroke. Many of these complications can lead to sudden cardiac arrest. Symptoms can range from tachycardia, bradycardia shortness of breath, chest pain, dizziness, fatigue or even no symptoms at all.
Ankylosing Spondylitis and the lungs
AS can also have an impact on the lungs. Apical Fibrobullous with or without secondary pulmonary superinfection. Spontaneous Pneumothorax, and Obstuctive Sleep Apnea. It can also affect the tracheobroncial tree and the lung parenchyma. Complications can lead to chest wall restriction.
Having heart and lung issues combined, that creates a whole new ball game for an AS patient. Life being altered by exhaustion, weakness, difficulty breathing, as well as increased or lowered heart rate.
No, everything is not normal
On the day I was told it all checked out normal, I sat in an ER with my heart rate going up, struggling to breath and my O2 level dropping as low as 69%! Anything below 95% is not normal and anything below 90% is definitely not normal! The monitor kept beeping the alarm for my O2 level dropping. They would push a button to stop it and walk away. My heart rate has gotten as high as 252 BPM at a resting state. I was placed on Metoprolol to control the heart rate, it didn’t work, it was increased and all it did was making my BP bottom out. They switched me to Verapamil. It seems to do okay, but my heart rate continues to rise and it also started dropping, as low as 24 BPM. Doing anything is a struggle. I have a family history of heart disease, my father had two mini heart attacks with 2 arteries blocked, and it wasn’t discovered by testing and monitoring. It was discovered during a surgical cardiac procedure. So clearly I have a risk. We talked about those numbers earlier. Well, just to make it a little more scary, I just happen to be 36, female and have AS and was also treated with NSAIDS long term. So as you can imagine, my risk level is probably higher than one might expect. That 60% has now been increased due to my age and gender, my family history and NSAID use. Keep in mind that there is also a 2 to 4 fold increase added in there too.
Making sense of it all
I have no idea how a person is supposed to wrap there head around this. I struggle with depression, anxiety and chronic pain. None of which have been difficult for me to accept or overcome. This on the other hand, how do you not think about things? Wondering should I make sure all my arrangements are in order in case something happens, or is that jumping the gun? Do I discuss it with my teenage children, or try to act like everything is okay? How do I make it through my work day when I can’t breath and feel like I’m going to pass out while being physically active, do I start looking into disability or wait and see? My children lost their father almost 2 years ago, how do I not worry about them losing me too? One parent gone already, they can’t go through that again. I think it would literally be the breaking point my daughter couldn’t get past. I know I turned all morbid all of a sudden, but the reality is, this is a real concern. I mean, by body clearly is struggling or I wouldn’t be symptomatic. I am unsure what the future holds, and that is a scary, scary thought. I understand a little bit about medical emergencies, I am a former EMT. When I see my vitals, I know my body is trying to tell me something. I feel it physically as well. So how do I get answers? I do I mentally stay calm and positive?
This my friends is why this cause is so important to me...nobody should have to suffer like this!
Get out there and Kick Some AS