So Many Deaths

All of my parental figures are dead. The first death came at only 6 years old with the last one being at age 29. Needless to say, it really changed how I saw the world and how I related to my peers.
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My current chronic illness story starts in early March 2020 with a fever, sore throat, cough, and shortness of breath. After a couple weeks, I was treated for a sinus infection, which I get every year. I continued to get worse and was tested for COVID 19 in early April, ~30 days after my first symptoms. It was negative.
I was hospitalized 3x in 2020 with bilateral pneumonia. I also developed tracheomalacia, meaning my trachea collapses when I exhale. Before I could get it surgically repaired, I developed a tracheoesophageal fistula, a hole between my trachea and my esophagus. That was surgically repaired in April 2021. May 2021 I went to the ER and was found to have a right calf DVT and bilateral PE's. I was on Eliquis for 6 months, delaying the repair of my collapsing trachea.,
In December 2021, I had a right heart cath with 5 minutes of exercise which showed that my body wasn't returning enough blood back to my heart (preload failure) and the blood returning to my heart had a higher percentage of oxygen with exercise instead of a lower one. This was actually my turning point. After doing some research, I started taking mitochondrial support supplements. That, combined with wearing oxygen 24/7 and taking Mestinon, has me MUCH more functional than the first 18 months of this journey.
Further testing at Cleveland Clinic showed I have mild systolic dysfunction of both my right and left ventricles and mild thickening on my aortic, mitral, and tricuspid valves. My EMG/NCS showed modest motor unit potential changes of decreased amplitude, reduced duration, and minimal polyphasia,“ though not severe enough to be diagnosed with myopathy. My QSART showed increased latency of the distal leg and foot, with decreased sweat production of the foot as well, which is seen in small fiber neuropathy.
After 3 years of having pulsatile tinnitus, I finally got the tests I needed and found out I have fibromuscular dysplasia. In my case, it's presenting as beading and small aneurysms in my carotid arteries. I will be seeing a specialist for that in June as well as undergoing more tests to see if other arteries are affected.
Using Sequencing's whole genome sequencing, I learned I have Autosomal Dominant Alport Syndrome. That explains the blood I've had in my urine since at least 2005 and the protein in my urine as well. Once again, even when I asked doctors why these things were happening, they were brushed off and never investigated.
I have something wrong with almost every system in my body. Testing continues and my life is nothing like it was prior to March 2020. I'm just trying to make the best of what I have.

[@ChronicKaty141]

Im so sorry for all of your losses❤️ You are so strong 🥹