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Cardiomyopathy + CHF, Mental Health & Support
Hi everyone, I'm new here and have spent some time today reading through others' stories & questions and already I feel less alone in this diagnosis.
I am 35 years old, and I was diagnosed (at 34) with dilated cardiomyopathy + CHF in June 2019 with an original EF of 15%. I thought I had bronchitis for months (“diagnosed” 2x by urgent care staff since I had no insurance thus no PCP at the time), so I was shocked when during my 3rd urgent care trip they x rayed my chest and found that my heart was enlarged & they urged me to go to the ER. Diagnosis was a shock to me – my father passed away from complications of cardiomyopathy when I was 10 years old, so hearing them give me the same diagnosis as his made me instantly break down in the ER. After being admitted to the hospital, though, I felt so much better physically that I didn’t dwell on the negative…I hadn’t been able to breathe for so many months that I felt like a brand new person on the medications they gave me (and I lost 10 lbs of fluid during my 4-day hospital stay – no wonder I couldn’t breathe!).
Once discharged, I changed my diet (low sodium + fluid restriction), began exercising again once I got the energy to do so, completed cardiac rehab, found a great cardiologist who I see regularly, and am doing everything that my doctor says as far as medication adjustments & other recommendations. I had a cardiac MRI and nuclear stress test about 3 months after my diagnosis, and both showed that my EF increased to 43%...yay for the improvement!
The problem I am currently having these several months later is with my support system. There’s no lack of love from my husband, family, or friends, but there is a lack of understanding & empathy. I’m torn between not needing/wanting a “pity party” but at the same time wanting people to acknowledge that this is now a part of my life and will always be a part of my life. Any time I voice any concerns, sadness, fears, etc, I’m met with “Don’t worry, you’ll be fine”…which I know comes with the best of intentions (and is probably due to just them not knowing what to say), but I can’t help but feel like it’s dismissive & disconnected.
I feel like I’m being selfish for wanting this type of support, but sometimes I feel like I’m hanging on by a thread & am all alone even when I'm surrounded by people. Has anybody else gone through this?
1959LADY, February 11, 2020 5:01pm EST
I completely understand your feelings! Yes I know my family is very concerned with the condition but like you said they just don't get it. I also am not looking for a "pity party" but I'm not a complainer and when I say I don't feel good or I don't feel right I don't want to hear "you'll be fine". I guess I'm just looking for an understanding ear to gripe to and I feel as if I'm being brushed off. I don't know if it's their way of dealing with the fact that something is wrong or what.
I don't sit around and wait to be taken care of. I'm up and out to work and running with grandkids and stuff all the time so when I say I think somethings up or I don't feel right I kind of expect a little (I don't know) maybe, sympathy?
I too get scared and wonder what my future holds.
sometimes just need an ear to listen to me
Namaedwards, February 11, 2020 8:05pm EST
Firstly, it's great to hear you're doing much better. All the best ahead with you journey to a healthier stronger heart.
I too struggle with the thoughts you mentioned. The urge to have a pity party while being surrounded by supportive, loving people but feeling alone in this. I've also felt resentful and angry at times and my loved ones are who get affected by it, but they understand and I try to not blame others or feel resentful of the lack of change or how other people's lives just seem to carry on as usual.
But I try to remind myself in those moments that this (the diagnosis) though life affecting is not life defining. And having spaces like these help- to be able to share things I don't know how to put into words for friends and family. I tell myself that it's ok to feel whatever im feeling, and remember that it's all temporary. These feelings will come and go. Fighting them for me causes more distress. I'm learning how to just be.
I hope we all find our own spaces of peace. Lots of good wishes
kimmetry, February 12, 2020 4:20pm EST
And 1959LADY, I'm in the same boat...I'm the family breadwinner, cook, house cleaner, child rearer, accountant, etc and I just keep chugging along..so whenever I have an "off" day or get swallowed up in my feelings, maybe I do expect a little more leeway than most people might.
I'm sure these feelings will likely pop up less & less as time goes on, but it's noce to know that this forum exists at least to be able to connect with others going through the same thing. <3
Upstater69, February 16, 2020 9:32am EST
You are so fortunate to have a great cardiologist and to have made so much progress in such a short time, congratulations!
There is a grieving process involved when one receives the diagnosis of cardiomyopathy or any other life changing health condition. The loss of a former lifestyle imposed upon you, a change you didn't ask for. The loss brings up many emotions-- sadness, anger, frustration, denial. The loss also affects your family members and friends. Perhaps there are activities you used to do as a family, go for a hike, spend a day walking about a favorite city. Going out for dinner becomes a challenge because of diet changes and not being able to join in with that glass of wine or a drink. The most difficult adjustment, for me, was having to ask for help when I was first diagnosed. I was told not to lift anything over 10 lbs! Asking for help to bring the laundry basket upstairs or bring in the groceries made me so angry, sometimes sad--it was a constant reminder to me and my loved ones that my heart was damaged. Perhaps this is true for your family members as well, thus the seeming lack of understanding and empathy from them. Denial plays a strong role in our survival too. I also know that being overtired, from overdoing, makes me feel more emotionally raw and can cause negative perceptions of most everything-- how I look, what friends say to me, how I feel.
Eventually I decided to find a therapist who also happened to be a nurse. Today there are many nurse practitioners who are trained in mental health counseling. This is so great, you get the nurse who understands your physical issues and the nurse who is trained to help you process the emotions and challenges that highjacked your life. "Psychology Today" has an excellent on-line search tool that helps to find a therapist in your area. I have referred many friends to that website. Or check out local clinics that may have psychiatric nurse practitioners. Ask co-workers or friends. Perhaps the cardiologist or someone on his team may be able to make a recommendation. It may take some time to find a therapist you connect with, it it is so worth it.
i was 49 when diagnosed. It's 20 years later and am still standing strong! Finding a good cardiologist, lifestyle changes, taking the meds, 6 month checkups, exercising at least 4-5 times a week have made this possible.
I especially appreciate the comment by Namaedwards, this condition "though life affecting is not life defining".