Dilated Cardiomyopathy

[AlabamaBelle]

First, I want to say I am not asking for advice. I am an experienced Peds ICU RN, Peds Dialysis RN and Acute HD/CRRT RN. I only ask for some things to expect...not a fan of surprises.

My husband was just diagnosed with dilated cardiomyopathy and aortic regurgitation. He has always kidded me about writing notes on paper towels...how ironic I find it that he wrote notes on a paper towel. His EF is 25% (he does not know I found it or know his EF, he is trying to protect me). There are ischemic areas in various areas. His cath is upcoming and, of course, we will know more. He is in denial, he's also a veterinarian, but this human stuff can get past him.

He will be a patient in the hospital I work in and I know the staff in the SICU where he will spend some time afterward. I am comfortable with them and they know me well as I spend a good amount of time dialysing patients in their unit.

I just need support, know what to expect as I am outside my comfort zone. I am fully aware of the seriousness. And please hope I behave myself and don't act like "one of those awful RN family members."

And I will become the major source of income. Good thing I am well paid and have good benefits with one of the Big 2 that I work for.

I'm not stressed, not stressed at all....

[Charge200J, BSN]

Whew, that's a lot to go through all at once. That's good that you know some staff on the unit that he will be on. Heart failure is not a linear path, there are twists and turns and baby steps forward and back. The staff there will be able to help explain each step of the way to you and guide you through it. Sometimes it is so hard being the family support/caregiver and having a medical background. Some tips/tricks I've learned:

1) Rally your troops. Put those well meaning family/friends to work. Make them a list of things they can do to help. Delegate what you can so you can focus on being at the bedside.

2) Pick your battles. To avoid being "that RN family member"...sometimes you'll need to bite your tongue, and sometimes you'll need to advocate for your spouse. At the end of the day it's patient safety that matters the most, don't worry about stepping on toes - no one should ever fault you for identifying safety concerns.

3) It's ok to take a break. Step away from the hospital, go home and shower. Exercise, get outside for some fresh air. Caregiver fatigue is even more insidious when the caregiver is in the healthcare profession.

Wishing you the best. Hang in there.

[dontbetachy90, BSN, RN]

Cardiac intermediate/progressive care RN here!

I am sorry to hear this diagnosis has been sprung upon you; as a nurse you know that ANY new diagnosis can be troublesome and overwhelming, and as you mentioned you "aren't stressed," I'm sure you have thousands of questions buzzing through your skull.

Did your husband have his cath yet?

I can imagine one of a series of things has occurred: Perhaps he received stenting/PCI, or maybe given his AR and depending on the degree of vessel disease, he is a candidate for surgery. At any rate and as you know, there will be a series of medications he will be expected to comply with, and it is possible depending on his symptoms that he may be referred to cardiac rehab. As a cardiac nurse I of course advocate for rehab for patients, if anything to really help them get a grasp on their disease process and management strategies as well. As I'm sure you know, the main goals of treating cardiomyopathy include managing conditions that contribute to the disease, controlling signs and symptoms, stopping or slowing disease progression, and reducing complications and the risk of sudden cardiac arrest.

Sometimes after PCI/revascularization and medical management, alongside risk-factor modification, patients can expect improvements in their eject fraction. Other times, they may become candidates for AICD/CRT therapy if arrhythmia become an issue. As you know, every patient and every situation is different, but lucky for him you are a nurse worth your salt and can help him navigate through "the human stuff." As a family member, you have every right to "be that awful RN family member," the key is knowing when to be "that nurse" and when to trust and let the doctors and nurses and specialists do their thing. I have faith that you can navigate these waters appropriately, but in the event you find yourself being a little too much to handle, know that those actions are more forgivable than many nurses would even admit. (I say this with a smile!) We are silly to expect family members, especially nurses who in all their glory are still trained to prepare for the worst possible outcome, to be cool, calm, and collected when faced with the immense amount of stress a new or scary diagnosis may bring, let alone a hospital stay where the food is sub-optimal, sleep is hard to come by, and everything dings and rings and rattles.

Wishing you and your husband the best!