Stand with Deanna in Her Health Battle

Hi everyone. My name is Deanna and I am 47 years old. I have spent the last 28 years of my life undergoing multiple aortic/artery dissections and open heart surgeries due to a genetic defect of the ACTA2 gene, which is a connective tissue disorder like EDS MARFAN & LD. It has resulted in 12 different major procedures to keep me alive & 2 strokes which have resulted in encephalomalacia in two different brain areas. The past 2 years have given me the chance to have my chest open 3 times for open heart surgery.

In May of 2022 I got my stenotic St Jude’s removed and replaced with an ON-X valve & a pacemaker implanted. We were forced to move from CO to VA late in 2020 to get healthcare to afford this surgery we knew HAD to happen bc my husband was between contracts when I was told it was urgently needed-I had to quit my job the year before bc the stress of my work was affecting the valve which was later solidified to be stenotic. Recovery from May's surgery was incredibly difficult in that I NEVER recovered due to another problem from a failed stent I had implanted in 2015 which caused a constant stabbing pain in my left shoulder. In October of 2022 my husband broke his leg so I became HIS legs not even 5 months after that major surgery. 5 months after he broke his leg, I was admitted to the hospital & they discovered a 9+cm pseudo-aneurysm hanging off that new valve which required the surgeon to go in AGAIN to remove it & paste down what he could-this second open heart was March of 2023. He told me that if this valve went bad again, there was NOTHING he could do. I STILL had the pain from the failed stent (TEVAR) plaguing me at this time and palliative care options were discussed to address that pain. In September of 2023, a follow-up scan revealed that the valve was indeed going bad again. The surgeon, seeing me NOT just give up, came up with a brand-new plan. The plan was to remove the ON-X valve and replace it with a homograft of human tissue. This would be my fifth open heart surgery in a lifetime, 3 in 2 years.This we planned to attempt for January. In December, that failed stent had degraded to the level where I no longer had the ability to stand up without being in unbearable pain which brought me to MedStar December 22, 2023. After I was admitted, they found the source of the pain from the TEVAR and were able to re-line it on December 28, 2023. There were plans to do the original homo graft earlier, but other people needed my surgeon’s help so I did not get it done until January 12, 2024. I survived, AGAIN, which definitely shocked me waking up, but I am never one to just GIVE UP.

Since I was released in January, the pain which plagued me for the past 4 years is no longer there to remind me of the failed stent which IS a bonus compared to where I've been the past several years. I am trying my BEST every day to get better, but this is 3 open hearts in 2 years time, plus the stent and a pacemaker implanted. The hit to our finances has been catastrophic & the stress from all of it is enough to ruin the good work the surgeon did. This is 5 major procedures in the past 2 years plus hospitalizations across 4 hospital networks. WE NEED HELP. Those of you who know me well know that is the LAST thing I try to ask from other people-*I* AM the helper in most social relationships and do not like asking. I've tried EVERYTHING to figure out how to pay these bills & I have sold everything I have, have no savings, no retirement, no money. As a huge cherry on top, my husband got a big paycut because the contract they were a part of was downgraded. We didn’t have enough $ to pay the bills we have, let alone a $20k paycut so this is another challenge I have on top of just being allowed to live at all. We have approximately $80k in bills I need to get paid for multiple hospitalizations across Colorado DC & Virginia. I am desperate. I am sorry to do it, but I don’t know what else I could even do. I am in the midst of applying for social security disability for the first time-I never thought I HAD to as most of you know I have worked several jobs at once for many years over the past decades. The strokes unfortunately have done their damage & I am no longer able to function like I used to.

Currently I am trying to recover from all of this trauma & just get a toe up. Anything you can give would be very much appreciated. Every dollar will go to help us pay my expenses & current upkeep. I hope to have the disability approved, but that may take a year or so to come through. Thank you for ANYTHING you can give.