Heart Update

This is a hard post to write. It's taken me a couple of weeks to get to the point that I could.

I had a cardiologist appointment a few weeks ago, primarily to see if the EECP treatments made any difference. They didn't. I am just about exactly where I was when I was diagnosed 15 months ago. I got much worse last summer and they managed to get me back to where I had originally been, but no progress beyond that has been made. We asked the cardiologist what my prognosis was at this point. He said that in his experience, if I haven't shown any improvement by this point, I never will.

According to my cardiologist, this is the equivalent of being told I have stage one cancer, but it's not responding to treatment. It is still a relatively mild case of cardiomyopathy. It doesn't really matter how mild it is though if they can't do anything about it. That just means I'll probably have a longer time before it gets to a critical point. No idea how long that will be.

It seems so weird to type this up. I feel as if it couldn't possibly be true. I spoke to a friend recently who is dealing with some pretty heavy medical stuff with some of his family members. He made the comment that things weren't really as bad as they sounded. I remarked that in my experience, it never seems real. Until you tell people what's going on and see the looks on their faces. I think I respond to that more strongly than others might as I read people for a living. I can tell most of the time what people are thinking.

I'm sorry that we've pretty much disappeared from everything. I appreciate all the help we've been offered. I'm so grateful we are surrounded by friends who love us and want to help. Unfortunately the help offered makes us realize all over again what's going on. We're not trying to be rude. We just can't quite deal with it yet ourselves. 

We aren't giving up. My cardiologist is referring me to a heart failure specialist in Dallas, one that he sends his hopeless cases to, the patients that need heart transplants. He says we have a head start as I'm not there yet. We may get to that point, but only about 50% of patients even survive the surgery, so that is a last ditch effort.

We've decided that as western medicine hasn't helped, we're adding eastern medicine to the mix. I'm continuing to go to the cardiologist and take my medications, but I am now seeing an acupuncturist twice a week, my chiropractor twice a month, and I'm working with a master herbalist as well. The acupuncture has improved my energy levels a bit and helped me to sleep better. She says she can treat my symptoms, but that it doesn't heal things like failing hearts. The chiropractor is using pressure points on my back to stimulate healing or something like that. The master herbalist gave me a more natural substitute for lasix, which I developed a sensitivity to. My cardiologist told me only to take the lasix when I absolutely needed to due to my reactions to it. Hopefully this herb will help replace it. The herbalist also had me start taking two other herbs that help the heart to heal. I'm having a bit of trouble adjusting to one of them (cayenne), but I'm working on increasing my dose.

We recognize where that means we are. I've heard of acquaintances who were diagnosed with major illnesses and I remember what I thought when their treatments didn't work and they turned to alternative treatments. I'm trying to figure out how to balance reality with hope and right now that's a hard balance to find. One moment I'll be in a place where I know I can beat this; where I refuse to give up and I'm willing to try anything as I know there must be an answer somewhere. The next moment I start thinking about what I need to realistically do to prepare for where this will probably go. I don't know how I'll ever be ok with writing my children letters for Rob to keep "just in case" or talking about who I want as pall bearers.

I hope and believe that I will recover from this somehow. It gives me an amazing view into what it's like for people to go through being diagnosed with a chronic or terminal illness; one that I don't think I ever would have understood if I hadn't experienced it on my own. I'm hoping that this is just another thing that I get to go through so I can understand and help my clients. If that is the case, I don't ever want to forget what this feels like. If it isn't, maybe this will help someone someday.