She is ready to tell her story. I'm not a doctor or an expert, I don't know every detail and pain like she does, but I will do the best I can sharing as her sister and best friend.
On November 6th, 2005, Aly gave birth to a beautiful little girl. Little did she know, this would begin the battle for her life. Leaving her 2 week old baby at home, Aly rushed to the hospital to find she had a Pulmonary Embolism. In our family, this was a terrifying nightmare happening again. Our Mother, Tamara Hales, passed away from a PE when Aly was 2 and I (Ashley) 8 months old. There was no way to know this would happen, it was devastating for many to lose Tammy. Thank God Aly survived this PE and would live her life normally with the exception of taking blood thinners; or so we thought.
A few months later she ended up in the hospital again, with another PE. Then another, and another. This patterned continued. Every blood clotting disorder test known to man has revealed nothing to tell us what this is and why it is happening. The average person on coumadin (blood thinner) needs their INR levels around 2-3. (The time it takes for ones blood to clot) This is considered a therapeutic range. Aly was still clotting in this range. Doctors feared internal bleeding if she went any higher. After several hospital stays, more clots, built up scar tissue and no function in her right lung, her doctors decided to proceed with a procedure called Pulmonary Thromboendarterectomy, which falls under the category of open heart surgery. In 2006, she had the surgery and after her recovery Aly was back to her normal self. Her right lung regained blood flow, she felt brand new!
Until 3 years later, it happened again. The doctors continued with testing, but nothing was found. This cycle of clotting and being so short of breath was only getting worse. Her right pulmonary artery was clogged and her right lung lost blood flow and function again. So, in 2010 she had another surgery, the same open heart surgery for the second time. The risk was higher to have the same surgery again because the artery had already been cut to remove the scar tissue. So the artery gets thinner every time. But this was the only "cure". The second surgery was again another sucess! We all thought, this has got to be the end.
Guess what happened next? Aly got another Pulmonary Embolism. This time it was much worse. The doctors were stunned, everyone was. This surgery was supposed to be the cure! Testing to find out why this happened for the third time, while on blood thinners, became an obsession. Test after test, hematologist after hematologist, why can't this be stopped? Her right lung lost blood flow and function again. Her blood vessels were becoming more narrow, blocked and destroyed so her body developed severe pulmonary arterial hypertension and heart failure. Trials with different medications became a trend for her.
For the past 3 years Aly has been on several medications. A specific medication, called remodulin, works best to get down the pressures in her heart. However, the side affects are intense. It's a SubQ IV (an IV that is constantly on her stomach to pump the med to her every minute) this causes horrible pain and swelling. When the IV is new (every 4-6 weeks) it is the worst for about 7-10 days. She has described it many ways, these are what come to mind:
"It feels like a never ceasing rib tattoo but on my stomach, constant pain."
"It feels like my insides are going to explode."
"...like I'm being stabbed over and over in the same spot on my stomach..."
Aly says, "It's my life support, and I'm not giving up."
Every day is a constant struggle for her. I have never seen my sister in so much aganizing pain from this medication and frustration that she is so short of breath. It brings me to tears regularly. Somehow, she seems to stay positive through all of this. Through the blood, sweat and tears, she sees the light. She always says, "this is the life God gave me, so this is how I will live it."
No matter how frustrated she is, how much she is hurting or how hard it is to breathe, she still has this mind set.
Some daysI forget she has this condition bc she hides it so well.
Although she is willing to continue in this pain, to be here for her daughter, Nevia, family and friends, her body can't take living this way for much longer. This surgery has never been performed THREE times on ONE person, so her doctors have been hesitant for the last few years. They have now agreed that going forward with a third open heart surgery is the best option at giving her more time to live her best life.
She NEEDS this surgery! Please pray for us and help us during this time! We need her here, but mostly her daughter needs her here! Nevia, also has this horrible disease. When she was 5 she had a stroke. She has already had 2 pulmonary embolisms. The doctors are currently debating doing Open Heart on her now as well. Aly and Nevia are working with genetic doctors (which is all out of pocket) trying to find a diagnosis so that this WON'T keep happening!
I have never seen someone stay so strong and fight so hard for something. Alexandra is an incredible human being, an amazing single mother, passionate, loving, caring and a motivated hard worker. She is my hero, and a huge inspiration, not only to myself but to everyone that knows her.
After countless hospital stays, doctor appointments, weekly blood draws, surgeries, tears and prayers for a miracle, Aly has never asked for a dime, insisting to pay on her own and refusing help from any sort of "go fund me" account.
With Aly having to leave her business for 2-3 months leaving her with no source of income to support herself or her daughter, because of this surgery coming up in December PLUS having to pay out of pocket for the genetics testing, I asked her again if I could tell her story and see who felt led to donate, she finally said yes.
Thank you all for your love and support!
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