Welcome to Focus On The Fight(previously Spoonie Spotlight), a series of interviews that will be posted every Friday, focusing on a blogger and their health.
This week we will meet Beth Cullen Crutcher who has (PPCM) Peripartum Cardiomyopathy!
Beth is a busy wife, mother and grandmother, she works at a very busy dental clinic and also spends time sharing her story on social media.
Beth has been diagnosed with (PPCM) Peripartum Cardiomyopathy, also (POTS) Postural Orthostatic Tachycardia Syndrome, and (MCTD) Mixed Connective Tissue Disorder. For today we will focus on PPCM.
Due to the fact that only 1 in 3-5000 women will develop PPCM you are probably not familiar with the condition. That being said I have done a little research and I will pass on the basic details of PPCM.
According to Johns Hopkins, “Peripartum cardiomyopathy is a weakness of the heart muscle that by definion begins sometime during the final month of pregnancy through about five months after delivery, without any other known cause. Most commonly, it occurs right after delivery. It is a rare condition that can carry mild or severe symptoms.”
Symptoms of the condition include:
• Feeling of heart racing or skipping beats (palpitations).
• Increased nighttime urination (nocturia)
• Shortness of breath with activity and when lying flat.
• Swelling of the ankles
• Swollen neck veins.
• Low blood pressure, or it may drop when standing up.
Now that we all know a little bit about Beth and the condition she lives with I would like to share the entirety of Beth’s Interview.
How long did it take you to get diagnosed?Now that you have been diagnosed and can look back at your past, is there an event that you can pinpoint as a flare now that at the time you didn’t know what it was?
I showed symptoms of Congestive heart failure after the birth of my first child in 1988. However I was never diagnosed properly. I always felt I never regained all the stamina I had before child birth but I thought I was just out of shape. I was 21 yo at that time. With the birth of my second child in 2001 is when my health definitively declined. I was diagnosed with PPCM and my heart was only pumping with a 10% (EF)ejection fraction. I was placed on meds and my heart is currently stable with a 40% EF. In 2013 I was having symptoms of almost fainting every time I stood up, and severe fatigue. I was then diagnosed with POTS. It took a year before POTS was diagnosed, by a tilt table test. The trouble with that is the help from POTS is more water and salt intake, which contradicts the (CHF)Congestive Heart failure treatment. Then when I was feeling at my worst. Huge fatigue, exercise intolerance, pain in joints, extreme abdominal pains, and more, I asked my Internist for a blood test to check for Lyme or autoimmune possibilities. Sure enough my ANA bloodwork came back high. Off to the Rheumatologist with a diagnosis of MCTD.
Please share how your health impacts your daily life!
I make myself get up every day. I'm usually stiff, with painful joints. My hands, fingers and feet are the worst. I wake up, and get up slowly, as to not get dizzy. Get dressed. , take my morning meds and get ready for work. All with little rest periods in between. Drive 30 minutes to work, I leave as early as I can to avoid high traffic and stress on the road. I get to work an hour or so before my first patient so I can take my time setting up procedures. Also , by that time my diuretic has kicked in and I will spend many of those minutes in the restroom. LOL. Depends on the patient load, and what procedures are done and how long I can rest between patients, as to how I will feel on any particular day. At the end of a work day, I go home, and if I'm still up for it, cook dinner for my husband and daughter. But most of the time it's grab through the drive thru or find something in the pantry. Get a quick shower , take more meds and go to bed exhausted by 8 or 9 pm.
Have you noticed that your health has impacted any of your current or previous relationships!?If so, how?
I married my true love in 1995. I was 29, and even though I had damage to my heart that I wasn't aware of I was much healthier and active then . When we married, it was for better or worse, sickness and in health that's for sure. He has seen me at my very best, and my very worse. He is a wonderfully patient man. He has been with me through all of my triumphs and sorrows.
In what way has your life changed since your diagnosis? Is there anything that you cannot do now that you could do before diagnosis?
Yes, there are many things I can not do now since my diagnosis. In my younger years I would dance and sing and I even used to be a gymnast! But I just remember those things fondly . I guess as anyone does when they start to age.
Everyone’s disease will act different, for you how do you know you are having a flare?
I have times when I feel even more fatigued or joint pain, or an aura migraine comes on, huge brain fog , and the feeling you just can take another step. Can't say what triggers it, seems sometimes even the barometric pressure change can even bring on a great flare.
What do you do to treat your flares? Or to make your bad days better?
When I feel a flare of even worse pain or fatigue I try to rest more than normal. But I have found for myself the more I make myself get up and do, the quicker I can feel more normal... Well... my normal.
In closing, I asked Beth what she would say if there was one only piece of advice she could share with those living with a chronic illness. As well as what one piece of advice she would give to someone going through the diagnosis process, or is newly diagnosed. She said she would say, “Be patient with yourself and don't feel sorry for yourself. Try and remember there are others that have it much worse than you do.” And “Just be and do the best you can with what you have and what you can do. Keep your loved ones close to your heart. And remember they are living with this too. I have a few different diagnosis', but the main one I focus on is the awareness of PPCM. It's the one I've lived with the longest.”
I would like to thank Beth for sharing her story with us. She has such a passion and drive to share about Peripartum Cardiomyopathy and educate others about this condition and others. Please take a moment to check out her social media platforms.
For more information on PERIPARTUM CARDIOMYOPATHY please visit the American Heart Association