To Breathe Again

January 1, 2025

Dear Friend,

Happy New Year!! I hope 2025 is good to you. I hope this finds you well. I haven’t written about medical stuff in a really long time so I thought I would give an update. I know you’ve been curious about how everything has been going.

In March 2024 I had my first PFT (pulmonary function test) test done since getting the tracheostomy out in 2021. This included the muscle function portion of the test too. The results showed that my lungs were even worse then they were in 2020. My lungs were indeed failing. The next steps were to get another blood gas test done and see if oxygen was going to be needed, again. Being re-trached was brought up and I refused.

In April I had an appointment with a specialized pharmacist. I like to pick peoples brain and ask a lot of questions. I was going to start a new medication for migraines. Before I could do that a pharmacist needed to ensure that I wasn’t on any medication that wouldn’t cause an interaction between one or more. Going through my medications at the time it was found that some of them caused harmful interactions, even if some were rare. Often retail pharmacies are so busy and understaffed that they do not check medications and the interactions between them. I tend to have extreme but very rare effects to medications.

I took the information I learned and started doing my own research. Over the course of my health spiraling there were several medications I was on that had severe reactions if taken together. I research every medication before taking them and make the decision on whether it’s worth it to take. I honestly thought the pharmacist was checking the meds I was taking, so I never really worried too much about that stuff.

I stopped seeing my gastroenterologist in 2021 after getting the G-tube I fought for, for two years prior to him agreeing to place it. The POTS specialist I saw retired and I never looked for anyone new. Prior to his retirement he also agreed that my lungs failing wasn’t from dysautonomia. This was because of how rapidly it all happened.

So why were my lungs failing? One medication I was on can cause a rare side effect that can cause shortness of breath, weakness, fatigue, fast irregular heart rate, metabolic acidosis, etc. While extremely rare shortness of breath can happen as well as respiratory failure. I have an obstruction upon exhalation. So having shortness of breath and weakened respiratory muscles meant I couldn’t exhale all the carbon dioxide, leading to a build up in my body. My lungs no longer worked like they should leading to them to fail.

Another medication I was one when taken at the same time, can have adverse effects. One being muscle weakness, and most rare paralysis. These two meds were killing me. I decided to stop taking the medication, I also decided to stop seeing my pulmonologist.

If I was going to survive or try to, I was going to have to figure stuff out on my own. I was going to have to try and heal myself without medical interventions. Getting my lung strength back up and allowing my lungs to heal. It took a few months before I stopped feeling short of breath. Don’t get me wrong, even after seven months I have moments where it’s hard to breathe. Winter was never enjoyable and made breathing harder. My lungs are nowhere near what they were in 2020, but they are still regaining strength.

Am I against medication? Absolutely not. I still take meds for ADHD, sleep, muscle spasms, migrains and nausea. I’m just a lot more cautious and aware of what I put into my body and doing more research on medications. I do feel people should be more aware of the potential for severe reactions when combining medications and what they are exactly. So often we go back to the doctor with a new or worsening symptoms and more meds are given to us.

I’ve stopped seeing my neurologist and rheumatologist. If ever I need them I’ll see them. I’m learning to listen to my body more and learning more about what makes the body do what it does and the signs and symptoms to look for in certain illnesses.

I’ve started working out, and have gained some muscle. After four years of being in the 80 pound range for weight I have FINALLY gained! It is a process as I can’t seem to gain weight and keep it on. Working out and gaining muscle has helped so much in this process.

When it comes to my lungs, I have brief moments when I feel I can’t breathe. I can run (more like sprint) and be active again, and for that I am thankful. By stopping medications, it means my pain is not controlled, so building muscle to support my joints has actually helped a bit. My neuropathy has never been controlled, so I’ve learned to deal with it. Like everything in life, just have to take it day by day.

I’m thankful for being here, to breathe another day. I’m so incredibly thankful for you and being a part of my journey.

I’ll be sure to write again soon.

Stay Well,

Rebecca