Survivor Story of Charlotte Willis
"My Family’s Struggle with Aortic, Heart and Cardiovascular Diseases"
Since 2005 my family has undertaken the mission of family caregiving. Without realizing it, we learned the demanding ins and outs of professional health care. We walked many hallways, set in many waiting rooms in doctors’ offices, pain clinics, laboratories, and hospitals. We watched the operations and roles of physician offices, including primary doctors, physicians’ assistants, nurse practitioners, plus other medical staff in today’s healthcare system.
I’ve learned when possible, to utilize one or two main healthcare system for inpatient and outpatient care to organized, managed and track health care records, findings, prescriptions, and appointments during treatment. The emotional and financial issues on an individual’s home, marriage and other family relationships add to an already stressful situation.
During this time, we watched my Father's diabetes take control of his body causing minor limb amputations, dialysis for his loss of his kidney functions, and severe nerve pain damage. He received outstanding 3-year care at Georgetown University in Washington DC, under the Limb Salvation Program.
In addition, my Mother fought her own health battles with a diagnosis of an Aortic Abdominal Aneurysm in the end of 2012 at the age of 72. This required repair at the Washington Hospital Center in Washington D.C. The following year in early 2013 she had a Thoracic Aortic Aneurysm Dissection. She was air lifted from the local hospital to Johns Hopkins in Baltimore, MD. This was a major devastation to our family. This medical emergency removed my Mother from the home and the family for a total of 6 months. My parents just recently celebrated over 50 years of marriage at the time.
In addition, during my mother’s recovery, in 2013 we lost a very important family member (ALL family members are very important in our family) my nephew at the age of 34 passed away from Congestive Heart Failure and Diabetes.
Around 2013, I began experiencing severe leg pain in both legs, difficulty swallowing, and trouble breathing. At that time, I was diagnosis with Complex Thoracic Aortic Aneurysms. During the evaluation process I found myself back in the in the Washington DC. metro area and the final evaluation was in Baltimore, MD at Johns Hopkins University.
During the process I was given a full body CTscan. I was than diagnosis with Thoracic Aortic Aneurysms with Pseudoaneurysms, located in the Ascending Aorta, Aortic Arch and in the Major Branches and the Descending Aorta. Also, Aortic Penetrating Ulcers, Abdominal Aneurysm, Right and Left Iliac Aneurysm with additional Aortic and Cardiovascular Diseases.
These diagnosis' were added to my current health issues being managed over the past years. Including an MRI that provided me with the diagnosis of Spinal Stenosis of the lower lumbar L4, L5 and S1 causing my severe leg pain. Long with Spinal Stenosis of the Cervical C2-C5.
After numerous adjustments to manage medications for blood pressure, cholesterol, blood flow, stenosis, and diabetes we've learned to manage the diseases with numerous medications, diet, exercise, stress control, and the battle to be smoke free.
I did not know at the time I was about to start my 6-year watch and wait journey. I was required to have CTscans twice a year during the wait and constant blood pressure monitoring, which I continued to fail due to the side effects of the medication taken for my blood pressure, cholesterol, and the stenosis. During this 6-year period my Dad past in 2014 and my Mother in 2016. I decided the side effects of the medication was worth it if I wanted to survive. My hold lifestyle changed during those 6 years.
Finally, a CTscan taken October 4, 2018 showed enough increase in the size of my major branch vessels in the aortic arch and the ascending aorta. The open-heart surgery was scheduled for October 2018 by my surgeon Dr. Michael Peter Siegenthaler, MD and my surgical team! Per my conversation with my surgeon, he scheduled a Left Heart Cardiac Catheterization for October 12, 2018. The procedure was performed Monday morning, October 15, 2018 and lasted for 10 hours.
Procedure: TOTAL AORTIC ARCH REPAIR WITH AN 18MM VASCUTEK GELWEAVE GRAFT, INNOMINATE ARTERY ANEURYSM REPAIR AND ASCENDING AORTIC REPAIR WITH A 24 MM VASCUTEK GELWEAVE GRAFT; TRANSESOPHAGEAL ECHOCARDIOGRAM; REMOVAL OF RIGHT ATRIAL APPENDAGE; Surgeon: Michael Peter Siegenthaler, MD;
The outcome was as expected. I spent 5 days on the ICU floor and discharged to home the following Friday!
After the aortic ascending and arch open-heart surgery recovery period of approximately 16 months. We continued with the follow up on the complex 6.0cm abdominal aortic aneurysm as well as right common iliac artery aneurysm. The aneurysm extends nearly to the level of the renal arteries. The procedure was scheduled for February 12, 2020 using Cardiovascular/Interventional Rabdology Technique.
Procedure: ABDOMINAL AORTIC ANEURYSM (AAA) REPAIR ENDOVASCULAR Service: Cardiovascular/Interventional Surgeon: Andrew Howard Schulick, MD. Preforming an aortoiliac stent graft traversing an infrarenal abdominal aortic aneurysm.
The procedure was completed within three hours. I was moved to Observation Recovery for the night and discharged the following morning!
Current medical status
· On the latest follow up CTscan in February 2021 the following are noted:
o A persistent endoleak seen is note in the endovascular AAA repair.
o Left common iliac artery measures 2.2 cm is stable.
o Atherosclerotic vascular calcifications are noted as serious.
o Dilatation Pseudoaneurysm of the mid aortic arch up to 3.8 cm.
o Aneurysmal dilatation of the descending thoracic aorta 4.7 x 4.1 cm. Per conversation with my Thoracic Surgeon no surgery until 5.5cm.
Facebook Resources -
· I made the decision to create two Facebook sites after discovering whenever I wanted information, I had to do a great deal of internet surfing about the diseases including the rare aortic disease.
· This led me to create the following Facebook Page and Facebook Group. Aortic Aneurysms, Heart and Cardiovascular Diseases in African Americans and Pseudoaneurysms, Aortic Aneurysms, and Penetrating Aortic Ulcers
· Being an African American I wanted to support education on things that would make a difference and bring awareness to this disease. My desire was to organize this in away that was easy to understand and to located vital information. It is very important for the community to know that you must see your physicians, the reason for lab work and the results, know our numbers including blood pressure, cholesterol, weight and overall lifestyle. I hoped to provide information on changing your diet, quit smoking, and remaining active.
· The primary categories on the sites are: Community Service, Health & Wellness, Medical & Health, Medical Resources and Advances in Technology. New information is posted regularly on the sites. Including some of my family adventures.
· Aortic Aneurysms, Heart and Cardiovascular Diseases in African Americans
· Pseudoaneurysms, Aortic Aneurysms, and Penetrating Aortic Ulcers
· We are currently converting the two sites to the new Facebook Business Platform. We will continue to post new information and other resources daily!