So, here is my story and the help I now need to change my life and give me back some independence So, on Sept, 17, 2020 I collapsed on my living room floor. I was taken to our local small ER where they realized that my aorta had dissected from top to bottom along with the carotid artery on the left side of my neck. I was definitely not expected to live even long enough for life flight to arrive and take me to Northwestern Hospital, but I was that 1% of 1% that managed to survive.
Once at Northwestern Hospital I under went a 10 hour emergency surgery to save my life. However, my vascular tissues were so degraded and so friable that the surgeons were only able to replace my aortic valve and graft the aortic arch. They then had to pull me out so as to not kill me in the process of saving me. This left 75% of the rest of my aorta and carotid artery still dissected. However, I was told that the rest of the dissection was stable and could be managed with blood pressure meds. They told me that my vascular tissues were so degraded that going back in even in the future was more than likely not an option and carried a high risk of death. So, after days of recovering in the ICU my doctors began to try and control my blood pressure and heart rate through blood pressure medications.
It has now been two months from the vascular injury and unfortunately the doctors have not been able to control the high blood pressure and heart rates. Leaving me with dangerously high BP's and HR's that become dangerously extreme anytime I try to get up to walk or take care of myself. The doctors have been stumped as to why this is happening to me and have been running all kinds of tests. The doctors are still trying to weigh out what the driving force behind my drug resistant dangerous hypertension is. They have come down to two things at this time, one being a potential adrenal tumor known as a Pheochromocytoma or Baroreflex Failure. The adrenal tumor is acting like a Pheo but is not showing up in pheo testing as an active pheo tumor. This leaves the doctors not knowing if going in to remove it would be the answer or possibly open me up to another set of problems, so this is still being weighed out. Now the Baroreflex Failure is a rare form of POTS / Dysautonomia that happens to the Baroreflex nerve which runs along the top of the aortic arch and up into the carotid artery, both of which were dissected during my vascular emergency on Sept. 17th, making this rare illness a real possibility. Unfortunately, both of these conditions when coupled with my EDS, Loeys-Dietz and the aortic dissection and subsequent surgery has left me in a very serious life and death situation. You see, if the blood pressures cant be controlled the other 75% of my dissected aorta and the dissected carotid artery will fully rupture destroying vital organs like my kidneys, heart and even brain or worse yet it can kill me instantly. So, until the doctors can decide if this is a pheo and do the surgery to remove it or decide that this is Baroreflex Failure and find a way to treat it, I am at a dangerously high risk of injury and or death just from getting up to walk to the bathroom. It also means I must remain laying down at all times in my bed just to try and keep the blood pressure and heart rate down to a level that wont injure or kill me.
Now if the doctors decide this is a pheochromocytoma it can take weeks to months to prep me to remove the tumor so that the tumor does not release dangerously high levels of catecholamines while they are trying to remove it, which in turn would kill me right on the table. If it is decided that this is Baroreflex Failure then it can takes weeks to months if ever to figure out how to control the BP and HR when I get up or even move. Baroreflex Failure is unfortunately, a chronic life long illness caused when that Baroreflex nerve is damaged. This again would be a life long struggle with being able to get up to be independent and live my life to some degree.
So, after weeks of being bed ridden and risking my life just to walk to my bathroom or go to a doctor appt. I am realizing that I am in desperate need of a powered wheelchair, one that is foldable and able to take with us to hospitals, yet small enough to maneuver around my small home, so that I can have some independence and a safe ability to get to the bathroom. After talking with my insurance company I have sadly realized that they do not pay for medical equipment like wheelchairs and unfortunately, the type of chair I need costs just under $3,000.00 and the ramp to put on my house so that I can get in and out of it is another $500.00, for a total cost of $3,500.00, money that me and my family do not have. Since the vascular dissection our financial situation has become dire, leaving us some weeks to depend on the goodness of family and friends to help us just get through the week or the end of the month. This makes being able to afford a wheelchair impossible. So, I am doing this Gofund Me page with the hopes of raising enough money to purchase a wheelchair and the needed ramp on my home.
This is the life changing wheelchair that I am trying to raise money to afford.
I know this is a lot of money to ask for, especially at this time when so many of us are facing our own financial uncertainty or crisis due to the pandemic. However, I am hoping with the crowd funding platform of Gofund Me that a small donation from many would help get me to the goal of being able to purchase my wheelchair and ramp. Being able to purchase this wheelchair would get me out of my bed safely and would give me some independence in being able to do things for myself, which would be amazing and life changing for me and my family, not to mention it could save me from further damaging my vascular system or worse yet losing my life to another rupture. So, I hope that if you have read through this that you will find it in your heart to make even a small donation to help me. Thank you to everyone who has taken the time to read my story.
- Tracey Barile
- Linda Desai
- Dean MacMorris
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