How to manage

I get it!

by asully - 2021-04-27 20:59:43

I've been so cooped up since covid hit!  I am a Chatty Cathy now whenever I do get to talk to someone where I always used to be shy!  I have spent most of my time over the year either at the cardiologist, ep, Hf cardio, getting tests done, having invasive tests done, and getting surgery.  In between that closely monitoring my health and slowly declining in functional capacity.

I have picked up the newer hoppy of online computer games per my significant others advice and that has been a great outlet for me (albeit not everyone's cup of tea).  Reading and watching movies, and spending time outside when the weather is nice.

It would have been hard to "go out" or do anything away from home even without covid due to all my symptoms, so my year has likely been much the same as it would have been due to my health.

Coping with HF is no walk in the park.  And personally I think it's a bit harder for young people to cope with because we are supposed to be at our peak or prime not slowly dying.

I am now at the crt-d or not decision time.  They offered me the life vest option as well but after reassurance from my ep that at this point it was highly unlikely I would need it I opted to pass.  I am still anooyed they didn't just put a crt-d in back in November instead of a crt-p but oh well.

You can chitter chatter in my ear all u want, I feel your suffering lol!

Your paintings

by Lovesthesun41 - 2021-04-27 21:32:21

I looked at the paintings that you posted and I must say they are beautiful!

my reply to asully and lovethesun

by Tulp - 2021-04-28 05:40:59

Thank you both for your replies.

I miss a chatroom here. Could be fun to be able to talk more. Feel free to @ me

Amazing artwork Tulp

by Gemita - 2021-04-28 08:12:37

Absolutely love it and obviously having a physical disability brings out the very best in your artistic skills.  Life is full of compensations, when one door closes, another opens to allow the light in and to help extend your enjoyment and quality of life.  Facing adversity can either make or break us.  It has certainly made you into the person you are today, with a greater appreciation of life, your family, yourself.  

Regarding your frustrations at having to wait for echocardiograms, I think we need to remind ourselves that movement on Ejection Fraction can take some time to change and that is why they don't perhaps do them so frequently.  There would be no point and until the cardiologist can view any movement, he too is unable to know whether your treatment at present is working or whether you will need further help.

You are free to talk in this thread as much as you like.  Someone is always around to pick up your message, so keep the conversation flowing Tulp.  While you have life, there is always hope of a new treatment, of a potential cure, of an extended life, so keep living to the very best of your ability.  Singing?   My hubby sings in a choir  (although not since COVID and I know with heart disease he finds this really tough, so well done).   You and Asully and others like you both are an inspiration to us all

reply to Gemita

by Tulp - 2021-04-28 22:21:22

Thank you for your colpliments.

The frustration comes also from the part that I have no feedback whatsoever concerning the home monitoring. Nothing to read, understand or survey, while the CrtD is inside me for 2 months. Must be my control freakissh way of coping aswell.

My réadaptation coach told me that singing is actually very good for heart recovery.

Good to know your hubby sings, I kmow he has a PM too.So singing will do him good.

If people are curious to hear my voice : here is a demo with some of our tracks =

https://m.soundcloud.com/user-234881451/demotriptychs