Gena's medical expenses
My name is Ivan Greager and I'm a friend and co-worker of Gena Elam. I started this GoFundMe to assist Gena in covering the mounting medical and personal expenses arising from yet another extended stay in hospital. But before we get to the donation request, let me give you some backstory on this amazing and inspirational little lady…
Gena was born 38 years ago with a series of challenging medical conditions. Not only was she born with a single ventricle, an extremely rare congenital heart defect (CHD) affecting about 5 out of every 100,000 live births, but she also has situs inversus, another rare condition in which all organs are mirrored or reversed from their normal positions. The combination of these congenital conditions has required Gena to face up to more surgical interventions than anybody should ever reasonably have to contemplate in a lifetime. The current count is around 25 procedures, including 6 heart surgeries one of which resulted in a life threatening Staph infection! These surgeries have turned her into the proverbial bionic woman with a dual chambered pace-maker, a mechanical AV valve and a stent.
The scary part is that she is not a transplant candidate and her remaining heart tissue is so scarred from all the surgeries there isn’t a lot of healthy tissue left. She lives every day knowing that should her heart have any further serious complications, there is no way to fix it. The beautiful part of this ugly story is that no one would look at Gena and think, “that girl has half of a heart”. She is one of the oldest living patients with this combination of rare congenital heart defects, and she has gotten to that point by not allowing this genetic misfortune to define her.
Instead she has been determined to show how much a CHD woman can achieve. Aside from her regular day job, Gena qualified as both a nutritionist and fitness instructor in order to demonstrate the benefits of a healthy, active lifestyle to other CHD patients. She spends time providing ministry and counselling to pediatric CHD patients. She writes a blog to share her journey and provide guidance to a younger generation of heart patients, in the hope that they will seek inspiration, comfort and direction from her own experiences. When the doctors told her that she could not do any strenuous aerobic exercise, she trained and successfully completed a half marathon. When the doctors said she couldn’t be an athlete, she summarily started weight training and transformed herself into an amateur bodybuilder. No obstacle is too large for this lady to overcome!
“Be strong and courageous”, says the Lord. Gena is both of these things and so much more. Her determination, bravery, optimism and sheer guts are an inspiration to everyone that has had the pleasure of meeting her.
As if Gena hasn’t gone through enough already, a recent turn of events has knocked her squarely on the chin. She experienced an alarmingly rapid reduction in her oxygen saturation levels – a few months ago she was an active amateur weight lifter and today she struggles to slowly walk 300ft without being completely of breath. She now lives 24 hours a day on oxygen. She passes out uncontrollably several times a day. Gena’s unique anatomy has attracted a lot of academic attention over the years however the specialist medical teams at the Memorial Hermann Heart and Vascular Center and the Mayo Clinic are currently at a loss with regards to the source of the current health problems. She was admitted into Memorial Hermann Hospital on November 23rd 2016 in order to allow closer monitoring of her oxygen levels as well as to control her pain. Without a clear clinical and/or surgical plan it is not clear how long Gena will need to stay in hospital. Although she is due to start receiving disability insurance the end of November 2016, this is only 60% of her regular salary and does not come close to covering the rapidly escalating medical bills.
She is strong-willed, fiercely independent and isn't used to asking for help. She certainly does not want people to feel this is about making money from her unique medical condition. However we would like to give her the financial reserves to cover immediate personal and medical expenses, so that she can focus 100% of her energy into getting well again and hopefully return to support her many CHD-related charitable causes. Any money raised beyond Gena’s actual personal and medical expenses will be donated to the American Heart Association. If, by the grace of God, we get to that point we will of course report back on how much money was donated.
Thanks so much for reading about Gena’s story and expressing some interest in helping. I kindly ask anyone that has been touched by her beaming smile, zest for life and downright sassiness to help donate what they can – any donation will be immensely appreciated. If you can't I understand and would just ask you to share this with as many people as you can. We also ask for your prayers as Gena continues to fight the next battle in what has been a very, very long war.
With love and thanks,
The Greager family
PS: Gena is a talented writer and her blog is definitely worth a read. If you are interested, please visit www.genaelam.com .
We arrived to spend a few days and have a few tests done. My precious Dr. Eidem saw me and decided to admit me to St. Mary's hospital and give me the holiday special. I had every test run on my heart, lungs and head from here to kingdom come, or at least that is what it felt like.
In the end, we found a few things. I have a hole in my lung and one of my pacemaker leads is detached. Overall, I am not dying. This is fantastic news!!! On the other hand, science hasn't caught up to Gena yet. We don't know everything. They don't know why my O2 stats are dropping as low as they are. They can't see everything they need to see because of the glorious way the good Lord designed my body. There is no explanation for the pain I am having. The consensus was doing nothing is much safer for now.
I have weaned off the pain meds and been doing therapy to rebuild my cardiovascular system so that I only need the O2 during the night. I am even lifting in the gym again. Everyday gets easier. Learning to live a new normal has been difficult, but it isn't my first rodeo. There are still a few days that aren’t great, but they are manageable now.
I am anxious to get back to work. I am going stir crazy here at home. A person can only read and watch so much. I know, I can hear how bad you feel for me on that. ;) Honestly though, having something to do everyday gives you a sense of purpose.
I am overwhelming grateful to each and every one of you for your generous donation to my medical expenses. My trip, clinic visit and hospital stay has reached almost $50k. If I had spare organs, I would consider selling them... LOL! I'm just kidding. Your donations are making a dent that I could have never made on my own. Thank you so, so much from the bottom of my mended heart.
Love and hugs,
Many, many thanks for the generous donations over the past three weeks. The outpouring of emotional and financial support has been overwhelming and I know Gena is immensely grateful for everyone's prayers, kindness and generosity.
Perhaps a quick update on Gena's medical condition...Gena and her Dad travelled up to the Mayo Clinic in Rochester, MN this week. She went through another battery of cardiac and pulmonary tests on Friday December16 - based on these tests, the cardiology team has decided to admit her into hospital (yet again) for closer monitoring and more intensive testing.
Gena is in good spirits all things considered and she is currently receiving some of the best medical care in the world. It is comforting to hear that the cardiologist will not release her until he gets to the bottom of her current set of problems.
It does of course mean that Gena will potentially spend yet another holiday season in a cardiology ward. We all know that Gena is an incredibly strong woman with a huge zest for life and an amazing will to rise up from the current setbacks, but please keep her in your thoughts and prayers over this Christmas season.
Thanks again and I wish you all a very merry Christmas,
I am so grateful to finally be going up. It is hard for me to pray these days. However, I know that my spirit stands firm when I cannot. I am so grateful to all of you who are praying for me. Thank you for your donations that are getting me there. I ask that you help me pray for an outcome. A diagnosis that will lead me away from the oxygen machines and back to my gym equipment. I will send an update when I can.
BTW - I love these Snapchat filters! Making me look well and stuff!
Thank you for your love, and support and donations. I feel truly blessed by each of you. I should be off to Mayo soon. No solid date yet, but hopefully before Christmas. Daddy is working on it with the docs. I will keep you all posted. Thank you all from my whole half heart!!
Love ❤️ Gena
Gena is truly an anazing woman! I had the pleasure of meeting her a few years ago as she was one of the leaders at a retreat I attended. Her smile lights up any room, and her gentle spirit makes everyone feel loved.