Anyone else with heart disease?

Vailara · May 2012

I have ischaemic heart disease and am looking for friends in the same position. I've found that it has affected me mentally as much as physically, so I'm dealing with both those aspects! Mentally, I'm much more risk-averse than I was, but now I'm trying to face the fear (including fear of exercise!). Physically, I do get side effects from the bucketloads of medication I take, and there's no point in me using a HRM because the medication affects my heart rate.

Aside from that, I work and am the mother of a teenager so have a busy life. I was slim for most of my life but my weight shot up a few years ago. I've lost some weight and am now hovering about the 200lb mark. I am learning to enjoy exercise, even though it's time-consuming and uncomfortable!

I had a cardiac event when my child was little and couldn't find anyone else in the same situation as most survivors seemed to be older. I'm now in my late 40s, but still at the younger end of IHD for women! I'd love to hear from other people with heart disease, particularly people with similar circumstances to me.

candy69apple79 · October 2012

I am 33 and have Aysemetrical septal hypertrophy (ASH) also obstructive cardiomyopathy and I have developed Congestive heart failure I also have an internal cardiac defib/ pacemaker it does both pacing and shocking my heart back to life.

I had a stroke and got hit badly with depression and was in bed for 2 years on a crap load of meds. finally in march of 2012 i hit rock bottom and changed things i got off a ton of meds and started doing more . I have been using mfp everyday for 95 days and learning about my meds and the way our bodies dont burn the same amout of calories because we have our heart rate lowered by meds so it has taken alot of adjusting but I have lost 18lbs so far and am now up to walking a 2 mile walk and a 1 mile walk everyday. I also try to do other excersies at home. sometimes I wear myself out allot .

today i feel depressed like im not doing enough.

would love to have other friends in the same situation with heart conditions having a hard time im currently 292.4lbs and have a very long way to go.

Vailara · October 2012

Thanks for posting. It sounds like you have been through a really hard time.

I hadn't really thought that lowering our heart rates would cut our calorie requirements, but now you mention it, it makes sense! No wonder I can't eat like I used to!

I know it seems like a long way to go. I increased my exercise gradually and I'm only losing weight very slowly, but I do feel I'm making progress. I definitely feel fitter than I did this time last year. It must be much harder for you with congestive heart failure as well. No wonder you get worn out.

TheDulcimerGuy · October 2012

Add me to the list, and very recently diagnosed. Friend requests sent

candy69apple79 · October 2012

It is definetly rough and I get so frigging tired but I have my good days and bad days. Just got too keep pushing through it. yes it is very slow going for us due to our heart rates and blood pressure beign lower so i try to be extra careful. thanks for the add

cianalynn · October 2012

I was diagnosed with Mitral Val Prolapse and Mild Mitral Regurgitation 2 months ago. Changed everything for me. Doc said I need to lose a few (a lot, really) pounds but then I could not lift or run. I run out of breath quite easily as well. So losing weight for me has been a struggle. Plus I feel that the meds she placed me on restricted the type of activity I can do. But I have managed to lose 10 pounds since then and though I want it to be more, I'm not gonna complain. In the end, I think that creativity in terms of the types of exercises that we do is key.

healthchick · October 2012

I am a little different but do identify with having a heart condition.

I was born with Tetralogy of Fallot. This means:

Ventricular septal defect (hole between the right and left ventricles)

Narrowing of the pulmonary outflow tract (the valve and artery that connect the heart with the lungs)

Overriding aorta (the artery that carries oxygen-rich blood to the body) that is shifted over the right ventricle and ventricular septal defect, instead of coming out only from the left ventricle

Thickened wall of the right ventricle (right ventricular hypertrophy)

I had a surgical repair when I was 16 months, and while my heart is not perfect it is all I know. I still have right ventricular hypertrophy and severe pulmonary value regurgitation. Recently some changes in my MRI have suggested that my right ventricular hypertrophy is beginning to worsen and my pulmonary value regurgitation is more severe. So the next step is a pulmonary valve replacement.

In the meantime my goal is to keep healthy by eating sensibly and exercising . I have never let anything hold me back and am determined to push on. I have been given guidelines from my cardiologist and continue to push myself (I thrive on challenge).

It is fantastic to have MFP peeps who also identify as "heart peeps"

mamaward64 · October 2012

Hi my name is Kathy and I was born with Infant PDA (Patent ductus arteriosus) and had my first surgery at 6 months old. As I was growing up at 11 I had my first heart attack. At 12 they did surgery for coarctation of my aorta. It was like major surgery back in the 70s. They cut me open and everything. Now adays they use a stent to correct the same problem. Back then they cut the section out and reattach.
So many years later here I am with congestive heart failure, the beginning stages of heart disease. I take four different medications aday for blood pressure and angina. I again have a slght coarc in my aorta again but now it is being monitored so if I need a stent they will put one in.
I was always told as a child I couldn't run, jump, and play like the other kids because of my heart. Well that of course made an obese, lazy person you have before you. I really want to be active and to like it. I had dreams of a little girl running and kicking a ball. Now I want to do that with my grandchildren.
Add me if you like I can use the same understanding and support.

K:drinker:

tetecia · November 2012

I'm in between Stage II and II CHF. I also have VSD, CoA and Right Ventricular Cardiomegaly. The VSD and the CoA were preformed over 4 different surgeries between the end of '85 and '87.

Currently, i am dealing with extree over-tiredness from the CHF. But, days i gave the energy to exercise it does help. I'm on Spironolactone, Lasix, Carvedilol, Lisinopril, Digoxin and i also have a script of Potassium and Nitro just in case i need to use it for sudden onset Angina and the such. This is all tied in with Chronic Neuralgia which makes it hard to be able to use my fine motor skill properly.

I am constantly in pain, but i know that i need to stay somewhat active and healthy just to sustain some sembalance of a normal life as a 27 year old.

I was wondering, has anybody messed with their macro's on here? For example, i saw that mine are 55-15-30 and i wasn't sure if i should keep it that way or change it due to the CHF. I have my sodium set at 2,300/day but even then that might be a bit much (although it is oh so hard to stay within the parameters some days!)

Smokey19 · November 2012

bump!

healthchick · December 2012

How is everyone doing? Heart babies and adults are awesome!

candy69apple79 · August 2014

Wow we havent updated this thread in awhile.
well my weight skyrocketed even more out of control I reached 345lbs I thought I was going to die.
I finally went for RNY Gastrict Bypass best decision of my life. I have lost 70lbs so far in 3 months. im already feeling healthier and can do so much more.
I feel like its slow going and Ive eaten a few things I shouldnt have but at least now I cant eat alot of the shouldnt haves lol.
im glad I made this decision now at least if I have a bad heart day / week im not going to put 20lbs back on after losing 10. that was so very hard.
How is everyone else doing?

Anyone else with heart disease?

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