Join the Conversation on
41 people
0 stories
5 posts
Explore Our Newsletters
What's New in
See full photo

Little helpful household tricks #Anxiety #TBI #RheumatoidArthritis #LBD #chf #Depression #etc

Disposable hair caps use for covering leftovers! Plastic wrap is too hard for me to deal with! This is amazing!


Scared of being in a relationship cause of a heart condition

First off, ever since I had my heart surgery when I was 16 I’ve been scared getting into a relationship because I really don’t know when my heart is going to stop. On top of that I have Klinefelter syndrome which I cannot father a child. Also I’m afraid that I might get cheated on and won’t accept me because of my health conditions.
#aaoca #Relationships #ChronicIllness #CHD #chdwarriors #KlinefelterSyndrome #HeartDefect #CongestiveHeartFailure #chf #heartfailure

1 comment

Is anyone dealing with both POTS and Congestive Heart Failure?

One cardiologist is giving me a diuretic and telling me to cut down on salt and fluids for my CHF. Another cardiologist treating me for POTS is telling me to quit the diuretic, increase salt and increase fluids. My Primary doc is heading up the Covid response team for the county and is hard to reach. They tell me to see another doc, but that doesn't work -- they look at my chart and get the dear in the headlights look. #chf #POTS


My #CHD Journey

I’m a 39 yr/old #CHD survivor & overcomer!

My defect is;

• Tetralogy of Fallot Pulmonary Valve ##CHD Atresia w/ Right Pulmonary Stenosis

• Pulmonary Valve has been replaced 6 out of the 7 times. 5 times since 1989.

• CHF since 2007/2008,

• Class 3 #chf ,

• 27 overall heart operations includ. 7 major open heart.

• 3 major strokes from #CHD issues.

• an ICD

• 2 aortic aneurysms one ascending at 4.2cm and one descending (root) at 5.3cm both are unable to be intervened. 

Recently moved from, Portland, Oregon to, Louisiana, and establishing care with a team down in, NOLA.

If you would like to chat or anything, please feel free to reach out! I love connecting with other #CHD patients and families.

#CardiacWarrior #CardiacJourney #ToFSurvivor

1 comment

When You and Your Spouse Have Chronic Illnesses #

It hit me like a ton of bricks.... My husband was chronically ill when we met 11 years ago and so was I even though I was undiagnosed. He’s been having an exacerbation since about November and I’ve been wondering how come I’m having a very difficult time taking care of us. It just dawned me that I’m chronically ill myself and that I cannot do everything that the two of us have been struggling to do together since we’ve been married. I felt embarrassed because I had to ask a friend to help me clean my house and will more than likely have to do so again!!!

I woke up today feeling like I need to sleep/rest for a week!!! Fibrobeast has me in it’s clutches in a horrible way today. Everything hurts from the top of my head to the soles of my feet more than it normally does. I’m feeling bad because I should be trying to prepare something to eat for the two of us; however even the easy to prepare stuff I bought is tooo difficult to prepare!

Enough of this, I’m grateful to be alive and I will probably order something to be delivered!!! Goodbye guilt and negative self-talk and Hello delivery person!!!!!!!

Have a Mighty Self-Loving Day!!!! Gentle Hugs and Love to you all!!!🤗🤗💜❤️💕
#CheckInWithMe #chf #Fibro

1 comment