Expect the Unexpected When Receiving Second Opinions
Second opinions are a welcome hope! I received one for the first time this week, and the experience left me questioning my decision.
Earlier this year, my primary pulmonologist and I agreed that I should seek a second opinion on my lung health. Pulmonary sarcoidosis is a very tricky condition. I can tell you from firsthand experience not to underestimate breathing and lung health. You really don’t want to be reminded of their importance.
I reached out to Penn Medicine’s Harron Lung Center. The center is well-known, so hopefully it can help me on my journey.
When I arrived for my initial consultation, the facility looked like a high-tech campus. I was impressed, to say the least. I made my way to the lung center thinking all sorts of things. I was trying not to get excited and overwhelmed before meeting the doctor. My breathing became a little labored, but I attributed that to nerves. It’s not easy trying to calm yourself down when you’re unsure what you’re anticipating.
Just go with the flow
My consultation was with a lung transplant doctor. I’d be lying to say I wasn’t terrified going into this meeting. It seemed like the longer I waited for the doctor, the more nervous I became. Time wasn’t on my side.
I met with one of the coordinators and everything went well. She reviewed my medical records and we went over a lot of my medical history, sort of filling in the blanks.
After I met with her, I finally met with the doctor. She seemed very pleasant. She asked a few questions, and then went into detail about the transplant program. During our meeting, I couldn’t help but to pay attention to her demeanor. I thought maybe I was overly nervous about meeting a new doctor at a new facility. I didn’t feel as relaxed as I normally am.
The doctor reviewed my medical history from the past three years and mentioned a few tests I would probably have to take. I told her I had already done the tests she mentioned at the beginning of the year. As she reviewed those tests further, she said I would probably have to repeat all of them. My heart started racing because I kept thinking about the 50-plus blood tests I did in January. I wondered, “Was this a good idea?”
As we continued to chat, I managed to make her laugh a bit. Believe it or not, that small reaction relieved a lot of the tension I was feeling. When I meet with my other doctors, I make a point to joke with them or to make them laugh. By nature, I love to make people laugh. It helps in whatever situations I’m facing.
My doctors’ appointments are more like short social meetings with old friends. I’ve developed pretty cool relationships with them. I share my homebrew with one of my pulmonologists and one of my respiratory therapists. The therapist has now started homebrewing.
The lung transplant doctor and I finished up, and I was ready to go. Overall, it wasn’t a bad meeting. It all came down to wanting to get a second opinion but not knowing what to expect. I can add this adventure to my list of life experiences.
Growing up, my brother and I would always prank each other. The victim would declare in defeat, “Expect the unexpected.“
I didn’t know what to expect that day, but I didn’t expect to have an advantage. I’m now in the care of two recognized lung centers. I can only believe that things will get better for me. I will meet with my pulmonologist this week and tell him how my initial visit went. Although the whole process scares me, it’s time to put fear back in its place. Expect the unexpected … expect to be better.
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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.
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Comments
Alan Bart Cameron MD
Like many of people with Sarcoidosis, I have long been frustrated with coming to a diagnosis and treatment for what seems to be a rare disease which has no clear diagnostic criteria, and no generally agreed upon treatment. The medical issues that most people diagnosed with Sarcoid are divergent to say the least, and the impression of what Sarcoid is, is dependent on the specialty of the people who treat it. When all you have is a hammer, much of the world looks like a nail.
If you have pulmonary symptoms than the disease looks like a lung disease which seems to improve (often dramatically) with steroids. If you have pain in your feet (common) then it looks like an inflammatory joint or tissue disorder- which improves (sometimes dramatically) with steroids. Depending on conditions, it may look like a neurological disorder, or cardiac disease, other endocrine problem, or about anything.. and it often improves (dramatically) with steroids. Sometimes the symptoms come and go without explanation over time. Many people have overwhelming fatigue as their major symptom- only to become worse with treatment of depression, but improve with steroids. A biopsy of almost anywhere affected may show granulomatous infiltration- but consistent but not dramatically diagnostic. (I have had numerous CT and MRI as well as PET scans- showing progression of disease and then improvement on steroids.
The first pulmonologist I saw concluded that I had Idiopathic pulmonary fibrosis (not yet 50) and advised me to go home and get my affairs in order. When I self medicated with prednisone- he asked me what for? He said the side effects would be too intense and I was going to die anyway. My lungs went from ground glass appearance to near normal with some granulomas in a few weeks, then when I tapered the steroids- the changes returned. Pulmonary functions also went from excellent in the past, to awful, and then improved with steroids. My Diffusion Capacity went from normal to as low as 25% and now it remains in the mid 80s (close to normal). During the evaluation, my pulmonologist considered multiple causes like BOOP or IPF- and came up with tentative diagnosis of Hypersensitivity pneumonitis from exposure to metal working fluids aerosolized in the factory where I was a plant physician. Statistically I am a clear outlier from expected life of 18 months (now well over 20 years and counting.)
I had issues with pain in my feet- and symetrical migratory polyarthropathy in joints commonly associated with Rheumatoid arthritis- and 40 years ago Mayo Clinic diagnosed me with sero-negative RA and placed me on Plaquinil which gave some help but bothered my peripheral vision, but when I ended up on steroids my pain went away, and has only recently returned as I am weaned of steroids. RA titers were negative, but sed rates were well over 100 (high).
I also have had issues with overwhelming fatigue- at times forced to take a rest under my desk at work, or stop the car by the side of the road on the way home to avoid crashing. I have had numerous sleep studies, and wear an IPPB machine at night, and manage my sleep cycles, but it remains an issue- and sleep people think I have narcolepsy based upon monitored 24 hour sleep studies.
I have had all the usual issues with steroid use- weight gain (at one time reached 320 pounds- now down to usual weight of 170 pounds), and insulin resistance with elevated blood sugars- but now am well controlled although had to add insulin which increases hunger and leads in me to weight gain. The pain in feet and joints is similar to what it was 40 years ago- almost exactly, but my internist says that I am a diabetic so that must be the reason. Gabapentin did not help the pain, but did make my feet swell dramatically, Doxepin also did not help the pain but made my mouth dry, bothered bowels, and sedated me further to point I could not get out of bed. Methotrexate was added which causes lung disease in some, and is not recommended if it bothers my kidney function- which it did. It is also now stopped.
There are no clear guidelines for drugs that help Sarcoidosis, but there are some for RA- and I have a form of RA. I have started an infusion of Remacaid, and it appears to be helping all of the symptoms- pain, fatigue, joint issues (I am putting off my rotator cuff surgery as my function seems better), and my pulmonary funcion studies have been slipping the last couple years, and when repeated next month I am hoping are at least stablized.
Sarcoidosis is a poorly understood disease which affects people in a variety of ways. It seems that for one person with the disease I am getting relief from an anti TNF drug, although I expect to remain of Steroids for life. Due to insurance limitations, the cost of Remicade (I use infliximab as substitue) can be prohibitably expensive, So you need to find a provider who will listen to you and do their homework. Do not expect a provider to have seen people who are just like you. In a metropolitin area of 1 million people there are likely 150 people who have sarcoid, and some will have primarily lung disease, or primarily heart or other organ disease, and some will be ethnically different, or dramatically different age. All indians walk singe file... at least the one I saw did- is not a comment on Native Americans, but how we view the world. Physicans tend to view the world in terms of the cases they saw. On our board exams there was one patient with Sarcoid- a 30 year old black woman whose symptoms improved with a short course of steroids. Statistically it appears that there are more blacks than whites, and young people verses older, and more women than men with sarcoid. I wonder how many like me, thought this was a disease to look for in young black females, and do not look for it in others. Of course there is little reason to look for the disease if no treatment is approved anyway. I am an elderly white man, and despite separate open lung biopsies to confirm the diagnosis- I had to fight to get treatment authorized.
I have had sarcoidosis for likely well over 50 years, and it does wax and wane- but I have been on the Infliximab now for 8-9 months and I believe it is helping at least me. I think it is important to participate fully in your own care, and not expect your provider to know everything, but should be willing to listen to your concerns. For me at this time, it seems to be working.
Linda Violante
I thought I was reading about myself. Thank you.
Charlton Harris
Thank You for adding this.
As a medical professional with sarcoidosis, I greatly appreciate your input. I've had this for several years, and I'm currently not on any meds. I DO believe that my holistic lifestyle and herbal supplements have helped me maintain my health with this condition. My problems actually started with 2 spontaneous pneumothoraces. With that said, I'm still doing o.k...planning to do better. Please continue to follow and contribute!
Brian
Hi Charlton,
I am also a sarcoid patient and have opted for a holistic approach.
My diet is much more whole food focused and am currently only taking serrapeptase to help alleviate congestion in the mornings.
Curious as to what herbal supplements you have found as helpful.
Your insight would be appreciated
Regards
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Brian
Charlton Harris
Hey Brian-
Thanks for taking the time to read my article. To answer your question, I take several herbal supplements that I truly believe have helped me along this path. I take Black Seed capsules for immune and liver health. Google it and you'll be surprised at the benefits. I also take Dandelion Root caps as a blood and liver cleanse. It also helps as a diuretic so you don't have to take a "water pill" for fluid. It also has the potassium needed when taking a diuretic. I also take Beet Root caps to help oxygen my blood. I have others that I take on and off, but those are the main ones. I hope it helps and please research how they may help you!
Peace!
Charlton Harris
Thank You for adding this. Please continue to follow and contribute. I'm sure we'll all appreciate your knowledge and experience as a medical professional living with this condition.