Night and Day Difference
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- čas přidán 22. 08. 2024
- Being off the Farxiga is like night and day!! I am SO MUCH more functional and able to do so much more. I'm actually just NOT getting sleepy in the evenings. It's really crazy. I'd forgotten what it was like to be able to stay awake all day and actually DO things. I'm going to enjoy it while I can because who knows what the future holds?
Questions? Comments? Topics you want me to cover in more depth? Just want to say hi? Email me! peggythepegazebracorn@gmail.com
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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 was also found to have tracheomalacia in December 2020, meaning my trachea collapses when I exhale. Before I could get it surgically repaired, they found 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 (RHC) with 5 minutes of exercise which showed very mild pulmonary hypertension, the cause of which was never investigated, that my body wasn't returning enough blood back to my heart during exercise (preload failure), and the blood returning to my heart had a higher percentage of oxygen with exercise instead of a lower one (impaired oxygen extraction). 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 cardiac testing showed I now have mild thickening on my aortic, mitral, and tricuspid valves. My last RHC showed worsening pulmonary hypertension and heart failure. 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. Further imaging did not reveal any other affected areas, though I have not yet had a brain MRI with contrast.
I have something wrong with almost every system in my body. My life is nothing like it was prior to March 2020. I'm just trying to make the best of what I have.
Great news
It's been nice!!!
Hello, I watch your every video. I like to ask something. I have been having shortness of breath for over a year. But the fact is my oxygen level doesn't drop. Tomorrow is my pulmonologist appointment. Should I ask the doctor for supplemental oxygen so I could be able to breathe easier? What am I supposed to do?or should I wait for the tests? It has been so hard. I have been very much fatigued.
I am so anxious as what if the doctor denies of having supplemental oxygen since I feel the need of it? How am gonna convince the doctor that I need oxygen? Please any advice.
Do they know what's causing your shortness of breath? Do you have heart failure, pulmonary hypertension, COPD, etc? Have you had supplemental oxygen, like in the hospital, and it was helpful?
Unfortunately, it will be near impossible to get a doctor to write a prescription for oxygen with normal oxygen levels. They need to figure out what's causing the shortness of breath.
I have been to 13 doctors and they all gaslighted my symptoms as having anxiety. Tomorrow will be my first time ever appointment with pulmonologist to see what's wrong with me. I don't know what should I expect. All I know that external oxygen supply has had resolved my symptoms greatly.
When I was admitted in the hopsital last year in April, then I was given oxygen and it was at 2L which immediately improved my symptoms of fatigued and shortness of breath. I don't have any supplemental oxygen supply at home.
Should I tell the doctor about me given oxygen at the admission in the hospital?
Yes. Definitely let the pulmonologist know. I'm sorry you too have suffered at the hands of doctors. It's horrible.
They need to find out the reason first if you need oxygen, must likely they will not prescribe it for you if your 02 is up above 90. It could be heart failure, COPD, fluid overload