Today we meet Elizabeth, who bravely shares with us what it is like living with a heart condition. Elizabeth so eloquently explains the trials and tribulations of diagnosing, awaiting surgery, and how HealthUnlocked has given her a space to talk to other people who understand, answer her questions and help her feel less alone.
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My experience started when I had a bad cough for months starting in October. After months of antibiotics, chest x-rays, and steroids, my GP asked me if I was aware I had a heart murmur. “All fresh news to me,” I replied with a smile on my face. Little did I know what was going to happen.
I was sent off for an echocardiogram in February and even I was aware of the different sounds being made by my heart. I immediately realised something was not quite right. The technician asked if I wanted feedback. I obviously did. I always want to know as much as possible. He told me I would need intervention on my heart. I asked, “What on earth does that mean?” He explained that I would need a valve replaced and said it would be open heart surgery because at 59, I was too old for keyhole surgery. I left my appointment in a bit of a daze and drove home.
I put off telling my husband and adult children. I didn’t know how to say this. I finally told my husband and hated doing it. Then I saw a cardiologist after having an electrocardiogram (ECG). My ECG was fine, but I was told I would need my aortic valve replaced by open heart surgery because it is the best way to do it. I learned I have a mild aortic stenosis, and this had probably been caused by radiotherapy for breast cancer on my left side. I was also suffering with central aortic regurgitation, which the doctor considered to be severe. To say I was stunned is an understatement.
I wasn’t in a state of mind to question all this information, as I really didn’t have much knowledge about any of this. I was told more tests would follow and given a phone number to contact valve nurses for further information.
In March, I went for lung function tests, and I am currently waiting for an angiogram, which I am already anxious about. Then I should have an appointment with the cardio surgery team, according to the letter I received in the post.
This has been a massive event that has been very difficult for me to deal with. I Google everything to do with my diagnosis to learn what I can. I felt I was given this diagnosis and afterward realised there was nobody I could ask for answers or reassurance. I felt I was left in a big void. I knew that I needed support while I was waiting to see the doctor again.
Thankfully, I found the British Heart Foundation site on HealthUnlocked. I joined this welcoming community where people knew exactly what I was going through. Other members had already been there or were in the same place as me. I didn’t feel stupid asking my questions. I learned that all these negative emotions I am feeling, including sheer terror, are normal. I am so grateful for the positive and supportive people I have reached out to. They have all given so much to me. I am still feeling terrified, but have been able to speak freely and reach out anytime I need help.
Spending time with my daughter Charlotte.
I love being outdoors and find I am better when I am puttering around the garden. I also feel better when my family is with me as that reassures me. I have always been an independent and active person and was constantly on the go. This is why it is so difficult to deal with the impact of my physical health. I just feel exhausted some days. I am learning to just give in on these days and hope I feel better the next day.
This period of waiting to get my surgery because of the National Health Service system is difficult. I would like to get through the surgery as soon as possible. I hope to come out the other end of this and get back to my old self.
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Thank you, Elizabeth, for sharing the story of your diagnosis with our readers. A domiciliary care worker for 28 years, she is currently on sick leave as she awaits her surgery.We wish you all the best with your surgery and recovery.
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Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions and wellbeing needs, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Contact us to get started sharing your story now: communications@healthunlocked.com
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