How long has it been since you were diagnosed?

J Kate
By J Kate Latest Reply 2013-03-04 19:37:27 -0600
Started 2012-07-24 10:50:05 -0500

Hello everyone. I've been thinking a lot about the journey we go through living with a chronic illness. At first is can be shocking, and sometimes we can even go through a state of denial. Somewhere along the road we decide to take control and make better decisions for our health. We make adjustments to our daily routine or some days scrap the routine entirely. In the end it is what it is, and we make the best of it in a unique and personal way. No two journeys are exactly the same. What has your journey been like?


8 replies

Gulcherboy
Gulcherboy 2012-09-15 19:15:34 -0500 Report

I am coming up on the first anniversary of my CHF diagnosis. It has been a MAJOR education for me and I find I easily get upset when close friends start talking about the bad foods they are eating. I'm almost an evangelist — but it hasn't cost me any friends — yet.

I've noticed everyone has a relative who has or had CHF and they all think the disease is not "real" until your blood is backing up into your lungs and you have serious SOB. Since my edema is still around my ankles and calves, many people think I am not sick. Luckily, none of those people are my doctors/cardiologists! Without exception, my team has been talented, knowledgeable, devoted, caring, generous and supportive — everything you'd want a doctor to be.

My family knows I have a heart condition, but they do not seem to understand how something like three hours of grocery shopping in two stores — one of which is a gargantu-Wal-Mart — wears me out. They get upset when I try to nap during the day. And my wife is afraid to kiss me good-bye when I go to work for fear it will trigger a fatal heart attack. My cardiologist has talked to her, but he might as well have been talking to a wall.

I'm still working in retail sales and occasionally have bouts with angina that my cardiologist can't explain, but other than that, my stent and angioplasty have been like magic for me — they even increased my EF number! These days I carry around a stent card and a card with my latest EKG on it just in case I turn up in an ED.

This past year has been so busy and such an education that I hope things slow down in Year Two and I can begin to adjust to life as a heart patient!

HeartHawk
HeartHawk 2012-09-15 22:06:38 -0500 Report

Gulcher,

Increasing that EF is like finding the "holy grail". Excellent work. Keep it up. The first year is always full of new and sometimes frightening experiences. The second year should ease up considerably. Still plenty of adjusting to living a "new" life. Keep fightin' on!

HH

cpa3485
cpa3485 2012-09-13 08:13:52 -0500 Report

I was first diagnosed with high blood pressure and high cholesterol levels close to 15 years ago but at the time I didn't take it very seriously. I took some medications on a sort of sporadic basis for awhile and was encouraged to get more exercise, which I really didn't do. Yeah, I thought I was pretty bulletproof. Over time though, I did a few things better. I eventually quit smoking and improved my diet a little bit.
Then about 20 months ago, I had a heart attack (MI) and 2 weeks later had 2 SCA's. I was extremely lucky to survive and there was no
more denial of anything after that happened.

I never felt like I was particularly abusive to my own body, but I certainly didn't recognize how many years of not so good habits could manifest into heart problems.

I am doing well now. I have an ICD to protect me, but it has never fired. I eat better. I exercise more and I try to be very aware of what my body is behaving. I have decided that many of the priorities I had on life were really not all that important so I have re-arranged some aspects of my life. I read, study and try and understand what happened to me and possibly why it happened. I was initially very angry with myself, but concluded eventually that assigning blame was not productive.

In conclusion, I consider myself to be very fortunate. I have this heart condition now that I have to deal with, but I try not to let it rule my life even though I have had to make some changes. I read somewhere that how you die isn't as important as how you live. That little statement has really hit home for me.

HeartHawk
HeartHawk 2012-09-14 00:21:11 -0500 Report

cpa,

Man, you have really hit the nail on the head. Thanks for the insightful history. It is certain to help a lot of community members.

HH