Diagnosis: Congestive Heart Failure

I am writing this because I found it very helpful and heartening to read about other people's stories with symptoms similar to mine. So if you are a young(ish) woman diagnosed with congestive heart failure, maybe this will help you know that you are not alone. This is the story of my diagnosis with congestive heart failure at the age of 39.

EKG. Chest X-ray. Echocardiogram. Angiogram. MRI of the heart.

Congestive heart failure.

Biventricular cardiomyopathy.

Diuretics. Beta blockers. ACE inhibitors.

The 6 minute walk test.

In January, all of these things became very real to me.

Towards the end of December, I started feeling out of sorts. I had some nausea. I was tired. I remember December 20 at our regular family Sunday dinner, I commented to my sister-in-law how I was so out of shape, I couldn't even haul my 3 year old out of her car seat that day without huffing and puffing. I also remember that night I threw up. I'm quite familiar with nausea but I don't actually throw up very often. But that night I did.

As the week progressed, my energy level plummeted. I got tired walking to the fridge. Crawling into bed was exhausting. I was just so. damn. tired.

Of course this was right before Christmas. The Husband said I should go to the doctor. I'm like, there are no doctors open the day before Christmas! Who am I going to see? I didn't ever feel like my life was in danger, it's not like I was bleeding to death, and I wasn't DYING, for crying out loud, so the ER seemed like a gross overreaction to feeling really tired. I could still walk up the stairs. I could still do anything - as long as I paced myself.

I dragged my ass through Christmas. I skipped Christmas Eve dinner (a HUGE tradition in my Ukrainian family) so that I could make sure I had enough energy for Christmas morning with the kids.

I'm not sure how I made it through the following week. I napped, sometimes three times a day. The Husband was home from work for a few days, so that was helpful. My kids watched a LOT of TV. Like, a LOT. I was too tired to care.

We stocked up on easy to eat/easy to prepare food. I was having trouble eating, because by the time I prepared something I was too tired to eat.

And the nausea. Ugh. It was exactly like my all-day sickness when I was pregnant. Food wasn't appetizing and I had low-grade nausea that made it very difficult to eat.

And remember the timeline - it was between Christmas and the New Year. A very difficult time to get in to see a doctor.  However I actually had a doctor appointment scheduled the Monday after the holidays (January 4) so I was hanging on until then.

I thought I was low in iron.

I thought I had the flu.

I thought I might have asthma.

I was slightly terrified that I was pregnant.

It never even crossed my mind that it could be my heart.

I dragged my sorry ass to the doctor's office. I said I'm not doing that great. I'm so tired. Just completely exhausted. Walking to the fridge makes me tired. EVERYTHING makes me tired.  And I'm having some shortness of breath. It's worse when lying down. I can't crawl into bed without feeling breathless. Sometimes I feel like I just can't take a deep enough breath. I have no appetite. I've lost weight because I can't eat. I'm nauseated, the nausea comes and goes.

The doctor sent me for four vials of blood worth of tests, plus a chest X-ray and EKG, and ordered an asthma test. I went immediately to get the X-ray and EKG.

I got a call in the afternoon, the doctor wants you to come in tomorrow.

Uh oh.

Next day, the doctor told me I had an enlarged heart. He was ordering an echocardiogram, which is a fancy word for an ultrasound of the heart. He told me the usual wait for the test was 6-7 months but he'd make some calls.

I don't know who he called but on Thursday, two days later, I got called about an appointment for the next day. Was I available? I told them I'd come in at midnight if I had to, I'd make that appointment come hell or high water!

In the meantime, I had decided that if I didn't get in for the echo within the week, I was going to the ER. Because I couldn't keep feeling like this. I felt AWFUL. The nausea was increasing. I was eating almost nothing - two spoonfuls of oatmeal, half a snack cup of applesauce - that was my total food intake for the DAY. I'm sure I lost a good 5-10 pounds between my doc appointment on Monday and my echo on Friday.

Friday afternoon, echocardiogram. I made The Husband leave work to take me - it was at a big hospital and I didn't quite know where I was going and I knew I didn't want to wander around in my state.

The echocardiogram was cool - it was really neat to see the heart working. I knew I was in trouble when they RN told me to wait for the doctor to come and talk to me. All the old ladies who were being tested were getting to go home, and I was sitting there, waiting. Ack!

The doctor showed up. He explained that my heart was not effectively pumping blood. My ejection fraction was under 20%, with normal being in the 50-60something range.  I'm pretty sure he asked me about my risk factors. He recommended that I be admitted, told me that something was off with my heart and they wanted to do some tests to investigate - an angiogram and an MRI. Being admitted would help speed the tests along.

A more senior doctor came to talk to us. The questions started:
So you're...?
39. I have 3 kids aged 9, almost 6, and 3.

Do you smoke?

No.

Do you drink?

No.

Do you have any family history of heart disease?

No. My family tends to live until 90 and then kicks the bucket. No history of early death from heart disease.

Do you have lupus/HIV/etc?

No.

Well, he said, it could be idiopathic, which means we just plain don't know why this happened. Normal is 50-60, yours is less than 20. He was surprised I looked as good as I did. He said he expected to see someone who looked a lot sicker based on my echocardiogram. The doctor said if you want, we can admit you today. It's Friday afternoon, which isn't the best time to be admitted, because not a lot can happen over the weekend, you won't get any tests until next week, but you can start treatment with drugs immediately. It's up to you, you can do this as an outpatient but getting the tests will take longer.

The Husband and I both immediately said I'd like to be admitted. I didn't want to feel crappy anymore. GIVE ME THE DRUGS!!!!

As we left to go to the other hospital, the RN who did my echocardiogram said "Sorry" - I'm like, it's not YOUR fault!

We drove to the other hospital, went right up to the ward and they gave me a room. 39 years old and I was in the cardiac ward of the hospital.