Focusing on Improvement While Living With Sarcoidosis

Focusing on Improvement While Living With Sarcoidosis
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Over the past few weeks, I had appointments with both of my pulmonologists involving follow-up consults and pulmonary function tests (PFTs). My new pulmonologist specializes in sarcoidosis and pulmonary hypertension, making him a welcome addition to my medical team.

I generally don’t mind the six-minute walk tests, but I do get a little nervous feeling like I have to rush. I used to walk and swim daily before I suffered several spontaneous pneumothoraces. I can’t go back to swimming now, but these obstacles haven’t stopped me from moving forward.

After the tests, we met to discuss the results and talked about a recent echocardiogram he had scheduled for me. My doctor told me my walk test wasn’t bad, considering I walked farther than required; however, I still needed quite a bit of oxygen midway through.

I mentioned I had reached out to my cardiologist about the echo. I monitor my blood pressure daily and send her a list of my readings every couple of weeks. Both specialists agreed that the echo looked good and that some of the pressure in my heart had decreased due to a new medicine. Good news!

Controlled testing is helpful

About two weeks after meeting with my new pulmonologist, I met with my primary pulmonologist for more testing, including breathing and another six-minute walk test. The hardest PFTs are the breathing tests. If you’ve never had the pleasure, I recommend it. You’ll be surprised by what you learn about your lung function.

Next was the walk test. I felt nervous because I just did a walk test two weeks earlier. Once I started walking, I held my own in terms of not needing additional oxygen. I walked about three of the six minutes before my oxygen saturation dropped like a stone — almost 10 points — but I kept moving. I recovered pretty quickly after the technicians provided me with supplemental oxygen, though I still needed quite a bit to finish the test.

After that episode, I met with my doctor. We casually chatted while he reviewed my test results. Like the technicians and me, he was a little taken aback when he saw the sudden drop in my oxygen level while walking. We both thought it might have been just one of those things, but it’s hard to tell, considering the condition of my lungs.

After all was said and done, he said my lungs were still stable, there weren’t any new pneumothoraces, and my right-heart pressures were coming down. Overall, not bad, but I can do better. Slow and steady wins the race!

My grandfathers led by example

Both of my grandfathers were big men. My father’s dad was affectionately called Big John. When I was a young boy, he was a big man with curly, black hair and a mutton chop-style beard. He wasn’t as social as my grandmother, but he was pretty laid-back. He loved hunting, fishing, gardening, whiskey, and his hounds. I like all but hunting and whiskey — I’m a gin guy!

As I got older, he battled lung cancer. That didn’t stop him from doing the things he liked to do, especially hunting, spending time with his hounds, and sipping. During his battle, he lost a lung. He slowed down after that, but he still enjoyed what he could. I’m sure he grew frustrated at times, as I do. But he still did a lot with one damaged lung. I still have both, and I have a lot of living left to do.

I’ve gotten my determination and steadfastness from all I’ve been through with pulmonary sarcoidosis. I refuse to sit back and let this condition define me. As long as I’m moving forward, I’m making progress. Life doesn’t stop with setbacks; they make living that much more interesting.

B.I. and Big John. (Courtesy of Charlton Harris)

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Charlton is an independent multimedia/video producer and video editor located in the Philadelphia, PA area. He has worked over a combined 30 plus years in advertising, legal education, and as an independent creative services provider. When he’s not creating at his desk or behind his camera, he’s in the kitchen cooking and is also known as a serious homebrewer. He recently completed the Culinary RX Certification program from Rouxbe Online Culinary School specializing in plant-based nutrition, and he has his food protection certification. With 2 professional bbq smoker’s in his yard, Charlton is also known as a skilled pit-master. He’s also appreciated as a jazz aficionado.
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Charlton is an independent multimedia/video producer and video editor located in the Philadelphia, PA area. He has worked over a combined 30 plus years in advertising, legal education, and as an independent creative services provider. When he’s not creating at his desk or behind his camera, he’s in the kitchen cooking and is also known as a serious homebrewer. He recently completed the Culinary RX Certification program from Rouxbe Online Culinary School specializing in plant-based nutrition, and he has his food protection certification. With 2 professional bbq smoker’s in his yard, Charlton is also known as a skilled pit-master. He’s also appreciated as a jazz aficionado.
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6 comments

  1. Debra says:

    Thanks again for sharing, Charlton. I’ve never had a pneumothorax (and hope I never do) but like you, I just cannot seem to get across the room before my sat levels “drop like a stone”. I am on oxygen 24/7 and while I am grateful for home oxygen concentrators and the smaller portable ones, I would still like to improve! I am learning that every little sign of progress is actually a big deal. And that’s the way we have to look at it. Reading about your own progress and how you tackle things helps. Keep on keeping on!

    • Charlton Harris says:

      Thanks for reading my column Ms. Deb. The key to maintaining is determination and to keep MOVING!! Sarcoidosis loves inactivity. Of you don’t belong to a gym join one, and take your tank with you. Walking on the treadmill does wonders for improvement- trust me! Also, ask your doctor about pulmonary rehab- it’s a blessing- believe me! Please continue to follow my columns, and God Bless your “comeback”!👍🏽💪🏾🙏🏽

  2. Nancy Nicoloff says:

    Charlton, thoroughly enjoyed your
    Article Sounds like you have a wonderful team of physicians. I’m still working on mine. My rheumatologist says, I’m a complex
    Person, regarding health issues
    Pulmonary sarcoidosis
    Lesions on my lumbar spine, thoracic spine, ribs and liver.
    I had two bone biopsies, drs looking for cancer, all clear. I won’t ramble
    On all my other issues. I’m so glad you have a great team of dr. I
    The the therapeutic pool, I’m sure may be years to get back to swimming, if ever. Need it desperately. Nice read
    Thank you. Nancy

    • Charlton Harris says:

      Thank you, Nancy for your support. Please continued to build your medical team and make sure they not only heart tippy, but they listen as well. I wrote a column about testing on January, please check it out, ther testing was a motivator for me!👍🏽💪🏾🙏🏽

  3. wendy schleyer says:

    all the best guidance to you. Wishing you better health. what a great writer you are. fishing is wonderful. Hope you can catch a cure for our disease.

    • Charlton Harris says:

      Thank you for the kind words, Wendy-I appreciate your compliment. Hopefully we can find a cure and/ or more therapies that will help us. In the meantime, I’ll comparator to write off you’ll continue to read my columns. Hopefully they can inspire you and many others!👍🏽💪🏾🙏🏽

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