Heart Update - 2nd Opinion

I haven't posted updates because it's  been hard to talk about.

In February I went back to my cardiologist. He did another echo and told me that my EF is still at 45%, which is what it was when I was diagnosed. I had gotten much worse and while they managed to improve on where I had been at my worst, I haven't gotten any better. He said there was nothing else they could do for me except to just keep checking it, have me stay on my meds, and wait for it to get worse so we had to take more drastic measures.

That was really hard to hear, so we didn't talk about it to very many people.

We've been planning on getting a second opinion for a while, but finally made it into another cardiologist's office today.

I was misdiagnosed. I don't have postpartum cardiomyopathy. He says we'll never know for sure what caused my heart failure, but it was probably either medication (the meds I was put on during my pregnancy with Eva) or a virus (if you've ever seen the movie "Beaches", that is what Barbara Hershey's character dies of).

Cardiac rehab is usually pretty successful with those issues . . . if done in the first 3-6 months after the condition develops. We're two years past that point (although if it was the meds from my pregnancy with Eva, then we're four years past it and it wasn't discovered until it was two years too late). At this point, not only would my insurance not cover cardiac rehab, but it wouldn't make a difference.

EECP was a huge waste of time because it doesn't even treat this type of condition and I shouldn't have been sent there. Those seven weeks were hell and it took me weeks to recover from that and now I find out that I shouldn't have had to go through any of it.

He thinks my PVC (when my heart would contract before filling up with blood, making me skip every third beat) was actually caused by low potassium levels that were due to being on lasix. The medication I was put on to treat the PVC makes you retain potassium, so it just balanced out the effects of the lasix. He took me off that med (I stopped using lasix months ago because of my reaction to it).

I'm going back next week for a stress echo and he's taking me off my beta blockers (the med I'm on the highest dose of) for 48 hours before the test. He is checking to see which parts of my heart are not functioning correctly. He's also checking to see what my heart does when I'm active as opposed to at rest. This will let him know what dose of the beta blockers I actually need to be on. My previous cardiologist didn't consider any of those questions.

Hopefully all of these things will help improve my ability to function. The bottom line is the same though. This isn't going to get better. The damage is now permanent. This new cardiologist is fairly confident that if we stay on top of it, he will be able to maintain my current levels for quite a while. We're fighting for time and we're trying to improve my quality of life as best we can.

Now I just need to figure out how to adjust to this and put a positive spin on it, because that's what I do.

We've adjusted so that I no longer have to do many physical chores around the house. I have a job that has very low physical requirements. The older two kids will be home next year (long story - they will be attending an online charter school), which makes it easier for me to sleep in or rest when needed. Almost all of my symptoms didn't show up until after I started medication, so maybe they will decrease significantly if my medication levels are decreased.

I wish this would go away, but I don't wish it never happened. This has been one of the hardest things we've ever gone through, but it has made a huge difference in our lives. It has forced me to stop doing everything for everyone, which not only allowed my kids and Rob to have the chance to step up, but also taught me to start letting people do things for me. It's really hard for me to let people in and that is something I am still working on. It reset our priorities and forced us to figure out what was important.

I wouldn't pick for this to continue. I keep hoping that somehow magically I will be able to heal from this. I know that the human body is so complex that the best the medical world can do is make an educated guess and that anything is possible. They told us we could never have children and we had six in ten years. Rob says the best way to make me do something is to tell me I can't do it.

All that being said, if this doesn't magically disappear, I'm sure years down the road I will be grateful for the lessons I learn from it. It sucks, but if it had to happen, I'm so glad it happened now. We got to have six amazing children (my heart won't make it through any more pregnancies), I have my degree and a job that I love that I can still do even with my heart, Rob has a job that has really good insurance and benefits and that can totally be left at the office. I have amazing friends who love me and are happy to be able to help me.

One of my friends on facebook posted a link to something written by a woman who's husband was killed a month earlier. Towards the end of the post, she stated "Option A is not available. So let's kick the $&^% out of option B." I can totally do that :)

I shared my emotional first aid kit with my women addict's group this week. Part of it was a poem I had on my wall when I was in college. It seems to apply here.

God,

Before He sent his children to earth

Gave each of them

A very carefully selected package

Of problems,

These,

He promised, smiling,

Are yours alone, No one

Else may have the blessings

These problems will bring you.

And only you

Have the special talents and abilities

That will be needed

To make these problems

Your servants.

Now go down to your birth

And to your forgetfulness, Know that

I love you beyond measure.

These problems that I give you

Are a symbol of that love.

These monuments you make of your life

With the help of your problems

Will be a symbol of your

Love for me.

Your Father.

~ Blaine M. Yorgason