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The Long Fight

Teena, age 42, California

I am a mother of 2, before POTS I was a very active person who loved to go ocean fishing on a boat, organizing parties, camping, hiking, skiing, biking, gardening and baking. I also have a full time job in clinical research.

About 3 years ago I started noticing I couldn't walk much, got tired, shortness of breath and wanted to lie down. Not knowing what it was, I started acupuncture hoping its just my asthma and brought it up with my doctor. She ran a blood panel and said everything was normal but my ANA was positive. That lead to a rheumatology check up but everything was normal there. I also went to a spine specialist for my back pain and they found some stiffness & swelling and after an MRI recommended neurotomy. I saw a neurologist to rule out anything neurological for my pain, who cleared me after multiple tests. The neurotomy helped with some pain but no improvement.

I started to feel worse and thought it was maybe my thyroid, since I also have hypothyroid. The endocrinologist said it could be the reason for my positive ANA but my thyroid was well managed by medications. More tests revealed fatty liver and now with a hepatologist. I was asked to lose weight without being able to exercise while I waited for a fibroscan. I was not overweight, 149lbs, height of 5.6, but I started daily work out and lost 9 pounds, pushing myself everyday in pain. This lead to nausea and not being able to be upright after the exercise. But after six months I was 140lbs and my fibroscan came back with no concerns. I just had to eat healthy and exercise. No improvement in symptoms, just frustrated not knowing and not being able to do anything.

After that I had just given up hope when I noticed my heart rate went up when I stood up and my shortness of breath was getting worse. My PCP ordered a stress echo that came back normal so she prescribed me something for heart rate and asked to do a pulmonary function test which came back abnormal.  I then had to see a pulmonologist who ordered a CPET. All this while I was feeling worse. My CPET came back abnormal pointing to heart failure. This is were it turned out to be a roller coaster ride because I had a validating test or so I thought. So the pulmonologist and cardiologist ordered echo, Holter monitor, stress MRI and everything was normal (since they are all done lying down). The first cardiologist told me it was deconditioning and I could lose more weight and the chances are its all in my head. I came home and cried, felt dismissed. He also called my PCP and said there was nothing wrong with me. I was asked to see a neurologist again who said there was nothing wrong and it could be CFS. Felt so dismissed, I knew I did not meet the CFS criteria. The second cardiologist said it had to be my lung. Another dead end. My PCP started acting like I was making it up, my video call once started with "what now, how can I help you". I changed doctors immediately. 

My new PCP asked me to see another pulmonologist, I had an objective test that said there was something going on which could not be ignored. I went to a different pulmonologist for a second opinion and he said my lung was fine and asked me how long I would look for answers - I said until I find something, I can't accept this without knowing what's wrong. Then I pursued a third pulmonologist who agreed my CPET points to my heart and I did a walk test in the hallway of her office and she noted my heart rate and said it looks like POTS and forwarded me to one of her UCSF cardiologist. Ever so thankful to that pulmonologist. She also said I should go to the CFS clinic in Stanford  so I made both these appointments CFS in a year and cardiologist in 2 months. Felt like this was my life now, getting worse everyday, not knowing how to fix it, waiting to here "good news everything came back normal nothings wrong with you" or its all in your head.

I  knew my heart was different. Something was off. My BP was higher, pulse rate was low when standing. I was self monitoring now. After waiting months to see a third cardiologist online, she said I don't seem to fit the POTS symptoms, since I did not have syncopy or low BP but my Holter monitor did show a lot of highs so I got my Tilt Table Test. After the tilt table test the cardiologist there reviewing it said my nausea and tingling in legs are not symptoms of POTS and Heart  rate variability is normal and it means I will live a long life. I saw the results it wasn't my bad days but it was still over 30 BPM. I went home disappointed, crying and with no hope. At the end of the road. Two weeks later after not hearing from my cardiologist, I decided to reach out. She replied that my test was in her spam mail and she missed it. I have POTS based on my numbers and symptoms and started me on Corlanor. We celebrated that night cause I finally had answers, it was a long way ahead but I had answers, objective and validated.

Since it was Christmas, the Corlanor medication approval was getting delayed and I was anxious to start my treatment. After calling twice the lady on the phone forwarded a one-time approval. Medication took a while but helped with getting back with my basic home life, cooking and cleaning, spending time with kids. Only to find out next month the insurance will not approve this medication. Had to try beta -blocker to see if that helps. It made every symptom come back. I felt like this was going to be it, again. Finally I  reached out to my cardiologist who called the insurance company and disputed the approval and got me back on Corlanor Feb 2022. 

I  have learned this is a life long fight. I will not give up. Some days are better than the others. I couldn't do it without my family and friends support. The support groups are a great way to learn, understand and provide a moral boost. I work in rare diseases and now I really know some of the struggles personally. I wish to advocate and build awareness in my circle and someday go back out for a half day fishing trip.

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