Finding the Right Doctor Can Make All the Difference
The alarm on my phone starts its disruptive routine early, and the repetitive noise annoys me out of my slumber. While the rest of the world remains cuddled up for a few more hours of sleep, my husband and I drag ourselves out of bed at 3 a.m. to catch a two-hour flight to see my scleroderma specialist.
Earlier this month, I mentioned in a previous column that my local rheumatologist had advised me that we needed to take an aggressive approach to counter the progression of my disease. Scared out of my mind, I followed my concerned doctor’s advice and quickly emailed my specialist at the Johns Hopkins Scleroderma Center in Baltimore.
Luckily, my specialist understands how important time is when dealing with a dangerous disease that is progressing. She responded immediately and scheduled an emergency appointment within two weeks.
Waiting is always the hardest part
The day before the appointment, I found myself completely broken and terrified. Waiting has always been the hardest part for me when it comes to my care. I repeatedly cried out of the blue. I even put my phone in the refrigerator when I was cleaning up after dinner. My mind was a pile of mush, and my emotions were out of control. I desperately needed my specialist to figure out a game plan that I could live with — literally.
Lisa and her husband catch a beautiful sunrise during an early morning flight last week to see her scleroderma specialist in Baltimore. (Photo by Lisa Weber)
Some good news
The appointment lasted almost three hours, and every minute was worth it. This particular doctor has an air of calmness about her that is infectious. But it’s her confidence that always puts me at ease. She discussed every possible treatment strategy, and ultimately decided that we had a few more options for medications we could try to stay on top of the disease and slow its progression. She didn’t think we needed to take a risky path just yet, such as a stem cell transplant or difficult infusions.
Thankfully, the appointment released all the stress and fear from my body, as if someone had unclogged a drain in my soul.
Although the new medications carry their own risks, such as rare but severe side effects, I’m happy I won’t have to worry about being isolated from my family while receiving high-risk lifesaving treatments. I haven’t reached that “last option” yet, and I’m determined never to get there. I consider this to be another win for this scleroderma warrior!
Life is worth it
The day before my appointment, I was a complete train wreck, and less than 24 hours later, I was toasting my husband! While celebrating, he looked at me and said, “This is why it doesn’t matter how much it costs us to see this doctor.” And he’s right — the right physician is worth their weight in gold.
We have sold our home and made many sacrifices over the years to see this doctor. And we don’t regret those decisions at all. I am here, and my children still have their mother. My life is worth it.
Your life is worth it, too. No matter how far you must travel, and despite the obstacles in your way, find a professional that provides you with the best care. Find the person with the most knowledge about your disease. Their expertise might just save your life.
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Note: Scleroderma 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 Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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Dolores Lortz
who is a great scleroderma doctor in tennessee?
Robin Davis
This article really hit home for me. I have localized Scleroderma and my rheumatologist, who is a fairly new doctor, prescribed mycophenolate at my first visit with her. She just met me and prescribed a life long medication. I am so concerned about the side affects of the medication because my father developed a rare blood cancer and some of the symptoms are the same as the blood cancer. The other therapy suggested was an dupixent injection every two weeks. I am nervous about the injection because of the condition of my skin. I am so uncertain of which therapy to take. I feel I too need another doctor's opinion.
Christel Goetsch
Hello again, Lisa! I once again can relate to your column. Although I don’t have to board a plane to see a scleroderma specialist, it is a long and stressful trip. Each time I question the need to see this particular physician, it only takes my next appointment to rid me of any doubt that this is who I need to see!
We are so fortunate that these are even options for us to get the critical care we need!
Enjoy your Thanksgiving as you once again are thankful for yet another thing amidst so many “bad” things we deal with on a daily basis!
Christel
❤️
Beatrice Greene
Hi Lisa, I always read your Scleroderma blogs and they resonate with my journey so well. I completely agree with you that finding a doctor whose knowledgeable in the treatment of this awful disease is worth everything! I am glad that your appointment went well and you are trying some new medicine that will slow the disease progression....great! I have a question for you about flying and YOUR safety protocols used. I would like to fly to visit family but haven’t due to my antibody levels after receiving both doses of the Pfizer vaccine. I had no antibody response to the vaccine. With that being said flying has been out of the picture for me at least for now. Did you do anything more than the usual mask, gloves and hand sanitizer for your flight? I wish you well and may you continue to blossom day by day.
Sincerely,
Bea
Lisa Weber
Hi Beatrice! No journey is the same. So you have to be comfortable with your choices. I wore an N95 mask, used sanitizer and changed my clothes as soon as I arrived.