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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

PFO closure with ASD now a set back. And lost

Hello,

Back in December I gained 20lbs in 15 days. By January I was 24/7 on oxygen. End of February, they found my PFO. In March, I had the ASD out into close my PFO. During surgery, the found I have
vasospasm endothelial dysfunction (main artery spasms).

Waking of from surgery, I felt good, could breath, wanted exercise, and even got off the oxygen. The edema went down a little but never got back to pre swelling size. My Gastroparlysis even improved to where I could eat some cooked veggies and processed fruits again. I had only vomited a hand full of times since surgery instead of every 4 days.

Throughout the summer, I had a few days the spasms were very bad and oxygen dropped but I was able to breath through the pain till it past.

Every month the DIA part of blood pressure started to climb. In September my Blood pressure reading were 130/118 with pulse of 120. The edema cam back and I have put on 8 more additional pounds above my high of My fluctuations during the day. Instead of a 14 lb change in a day… I am down to 3 lbs. I am now on 2 water pills twice a day and blood pressure meds. It has brought my blood pressure down to normal range again but edema is still gaining. Additionally, I started to need the oxygen daily and as of yesterday, the Pulmonologist put me back on oxygen 24/7.

My Gastroparlysis is acting up and I barely eat soup once a day. My hair is falling out in clumps and the Pulmonologist said I lost 1/3 outer hair in my eyebrows. He pressed on my leg and said the flow back us delayed. My toes are light gray again. The Pulmonologist is back to thinking there is Pulmonary hypertension in 3rd chamber… I told him cardiologist said they ruled out Pulmonary hypertension when they closed the PFO.

The cardiologist says it is not my heart, Pulmonologist thinks it is. I feel like I am back in December and January before I had the extreme crash with TIAs causing temporarily paralysis in face and left side.

I never want to go through that feeling again.

What do I do?

Hello Bistlinelv
I’m so sorry to hear of your difficulties, it sounds like you are having an awful time and I am wishing you very much better days ahead.
Sorry I don’t have any experience of your conditions so can’t comment on what you can do medically.
But in the small hope it helps you cope with your conditions, I’ll share my ‘emotional’ journey - which was easily as bad as the physical. Here’s what I look back & think would have helped to learn sooner.

A- How much does it help our sanity, to “play the cards we’re dealt” ?

I don’t mean leaving everything to fate, more seeing the difference between uncontrollable & controllable. I’ve been forced to learn - to fight for what I can influence (getting a specialist congenital heart doc), but also recognise the reality of where I am today (sadly I couldn’t wish things away) and avoid wasting hope & energy fighting things I couldn’t influence (eg if I’d need simple or complex surgery, & when).
So I had to learn reality & acceptance. Easier to see in hindsight.

B- How much can other people support?
Friends I thought would be helpful companions were nowhere, others who I didn’t expect anything from were texting me daily cheer-ups. I hated to ask for things, but it made things simpler for them (knowing what to do), and helped me keep energy for the toughest stuff.

I hope Bistlinelv that this doesn’t sound like preaching, I don’t intend that, and I know you will find what works for you best. I just think feeling & facing the emotions (anxiety, panic, grief, loss, fear, confusion, frustration) is more than half the battle, because once my mind ‘got straighter’, I was able to handle the physical.

That said, I can see you have way more on your plate than I did, and I am really sad for your troubles. Everyone here is on your side, wishing you well and hopefully having doctor recommendations etc. Good luck.

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Thank you. All heart conditions are equally as troubling.

I have learned my friends who said they would come help never show up.

I let the ball just keep bouncing and know God has a plan.