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Sydney’s Story

Site created on April 15, 2023

Many of you may know that Sydney's story started when she was about 19, but gained clarity and a name in December of 2014 when she was diagnosed with idiopathic Pulmonary Arterial Hypertension. Prior to that December, we knew that Sydney would occasionally pass out when exercising or getting her heart rate up - and she would experience episodes of tightened chest and inability to breath temporarily, followed by coming to and regaining the ability to breath. Gaining the diagnosis gave clarity in the actual root cause of the issue - that being that her pulmonary blood pressure was much higher than the allowable range, causing episodes of passing out and losing consciousness. There are more details on the disease and links to information in the "Ways to Help" section.

There is no cure for Pulmonary Arterial Hypertension, only treatments. Many people who know and love Sydney have been unaware of the toll of the disease - because she had been able to manage the condition mostly-successfully through combination therapy drugs (i.e. Specialty Pharmacy Meds) for the past several years. The efficacy of the treatments wears off eventually, and results in periodic changes in medication amounting to a never ending carousel of change and side effects - leading to the last stop of a double lung transplant. After Sydney's COVID diagnosis late last summer her medication efficacy had worn off resulting in a decline of her health, which picked up in pace over the past few weeks.

Late Monday evening on the 10th of April Sydney had her 3rd episode (passing out) of the previous 10 days, prompting a late night visit to the emergency room. After consulting with staff fellows with her primary care physician we determined we could not wait any longer to bring her in for evaluation. She had recently switched medications which was not going smoothly to put it mildly, and her health had begun to decline to worse than at diagnosis.

Fast forward a week in the hospital - after many consultations, evaluations, opinions and discussions we are at the stage where Sydney will need a double lung transplant, and we are taking steps to qualify her and ready her for the procedure. it is a process to get onto the transplant registry, which we are currently working through and hopeful we can qualify for.

Those of us that know Sydney best know she is a fierce friend and disability advocate. The ICU does not allow fresh flowers in rooms, so instead of sending flowers please consider a donation to Donate Life America (https://donatelife.net/) in Sydney's name - and advocate for your friends and loved ones to become organ donors. 90% of America supports organ donation, but only 60% are actually signed up. Every 9 minutes someone is added to the organ transplant waiting list. Each day 17 people die waiting on the list. 1 donor has the potential to save or impact 75 lives. Please consider donation to prolong the lives of those in need, which includes us for Sydney.

Newest Update

Journal entry by Thomas Ward — May 25, 2023

Sydney was moved up to the hospital floor on Tuesday after her docs were able to get her off the IV drips with medications that can only be administered in the ICU. The view is better and it’s a quieter room on the regular hospital floor.

The primary focus the past few days have been controlling blood pressures and heart rates to minimize the stress on the aortic pseudo aneurysm. The current plan is to control those metrics (which control the level of strain), discharge home for a few weeks, and after the at-home IV meds are finished (about 5-6 weeks from now) we will have Sydney back in for surgery to place a stint in her aorta. We are disappointed to have another major surgery likely on the horizon, and the situation is not ideal for a number of reasons - but we are focused on getting home before the long weekend. Discharge will not be today, but we are hopeful for tomorrow. Sydney is tired of being in the hospital more than anything, and is ready to be at home continuing her rest and recovery. I would echo that sentiment.

Read More of the journal titled "May 25, 2023"

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