In The Beginning
There’s been a LOT going on. Almost too much. It’s been nineteen years since my original diagnosis. It’s been twenty-one years since my first symptom. It never lets me down. It’s been my constant companion. Yes. Sarcoid: “The disease that keeps on giving.”
Since moving to Independence, MO I’ve been trying to take care of my home. I’m just days away (May 18th) from my two year closing aniversary. I’ve done SO MUCH to help make this home livable and something I can be proud of.
During the first year, things seemed to be going fine. Then in October of 2023, I tried to get full Medicaid here in good old Misery … I mean … Missouri. In NJ I was certainly “poor enough” to get full Medicaid. But here in MO … not so much. Even though I was making the same amount via Social Security, here in MO … I wasn’t POOR ENOUGH! Grrrrrrrr.
So the only thing I could get was Missouri’s version of Medicaid: Mo Health Net. Net? Not so much. But the tier of MO Health Net I did get paid for my Medicare monthly fee. So with that I decided to get a Medicare Advantage Plan. After MUCH research I chose a Humana plan.
With that done I proceeded to find new doctors. Back in NJ, I had to see my pulmonologist, Dr Berman, regularly. Chest X-rays, pulmonary function tests, et. al. I also had to see my Opthamologist, ENT, and Nephrologist to be certain my Sarcoid wasn’t affecting any of those parts of my body.
Cardiologist: Dr Jean-Alfred Thomas
The first doctor I looked for (besides my new Dentist) was a cardiologist. Again, I did massive research and chose Dr Jean-Alfred Thomas of University of Kansas Health System. Knowing that my dad & my paternal grandfather both died of massive heart attacks—at 62 and 72 respectivly— I thought it prudent to “get a baseline” of my heart. By the end of our first in office appointment—I knew this was the right guy! When I told him I had Sarcoid—he was on top of it! He was very familiar with the disease, and did extra blood tests, as well as an ultrasound, and MRI of my heart. He also made sure to connect with my new Pulmonologist: Dr Mark Hamblin.
Pulmonologist: Dr Mark Hamblin
Dr Mark J Hamblin was just like my two previous pulmonologists: Sarcoid specialist, Sarcoid researcher, and teacher in a university hospital setting. If I wanted to see Dr Hamblin face to face, I couldn’t get an appointment until late August of 2024. WTF? What I could get was a video visit—much sooner. I’m glad I did. But before the video visit I needed to get a full pulmonary function test, as well as a lung CT scan with and without contrast.
With all that done, we were ready for our first visit. The first Zoom video visit lasted almost an hour. He was thorough in questions he asked about my history, he seemed pleasant enough—no god complex—and was VERY informed about the latest research on Sarcoid. I really was impressed. I also told him about issues and history he needed to know.
During the video visit he was able to share with me, my lung CT scan on my computer screen, while he explained what he saw. And what he saw, he and I both didn’t like. He saw fibrotic “tendrils” on the inner walls of my lungs. To him they could be caused by my Sarcoid, or the beginning of some interstitial lung disease. WHAT???? He said … no reason to freak—yet. They could be remnants of previous Sarcoid damage, or not, but something we needed to monitor.
With all he saw and my history he ordered a slew of blood tests. Some of these test were very specialized blood tests to see if my Sarcoid was active, as well as markers that may indicate cardiac Sarcoid.
Getting To The Heart Of Things
Dr Thomas was already interested to find out if I had cardiac Sarcoid. He ordered a stress/PET scan. Once Dr Hamblin and I talked, he decided to cancel Dr Thomas’ stress/PET scan and oder another with a different contrast injection. His version of the test tests specifically for cardiac Sarcoid; where Dr Thomas’ would not. I still have to go for that scan sometime next week.
That’s Not The Scary Part
Many of the blood tests Dr Hamblin ordered came back just days after ordering them. The worst part was waiting for the specialized tests he ordered—they could take weeks to get results. Some of those specialized tests started to trickle in last week. But no one on Dr Hamblin’s staff looked at them, nor did he. Using myChart I contacted his staff and asked … are all the tests back? When will Dr Hamblin look at them and tell me what he sees? Today I got results and answers directly from Dr Hamblin.
Be Careful What You Wish For
Let’s just say … I’m a little stressed by the results.
Parathyroid Hormone
We are still waiting on most of the labs for sarcoidosis to come back. It will be later this week or next week. You appear to be significantly vitamin D deficient. PTH or parathyroid hormone regulates vitamin D metabolism, and when that high, vitamin D is usually very low, or you have been vitamin D deficient for such a long time that you have developed hyperparathyroidism.
—Dr Mark Hamblin – 4/24/24
I’ll be going for an ultrasound of my thyroid and parathyroids to see what’s what. What happens after that … still a mystery until we see all test results.
The More The Merrier?
Additional lab results are back:
The interleukin-2 receptor is probably the most sensitive and specific marker of sarcoidosis disease activity. It is elevated, so, you most likely do have active disease in the body, but it does not necessarily tell us where.
Obviously, the main concern is the heart, but it could also suggest that some of those subtle interstitial lung abnormalities on chest CT are truly related to pulmonary sarcoidosis.
When we get the cardiac PET/CT, we will be able to tell if it is lighting up in the lungs, the heart, or possibly somewhere else like the liver or spleen.
We have seen associations between coxsackie virus type B and cardiac sarcoidosis, and you do have an elevated antibody to coxsackie virus type IV, which is one that has previously been associated with cardiac sarcoidosis.
However, the lysozyme level is normal. This is typically a marker of sarcoidosis disease activity when it is outside of the lungs.
Ultimately, we just need the cardiac PET/CT to determine where there is evidence of disease activity, and then that we will determine how to move forward with treatment.
It looks like that is scheduled for May 22. It does not look like the lab ran the 1, 25 dihydroxy vitamin D. It was normal in February, so, I really would not expect it to be elevated currently. I do not know if they just did not get enough blood to run it or what. I do not feel like we need to repeat that, but obviously the parathyroid hormone was elevated, so I would probably just favor getting an ultrasound of the thyroid, which would also capture the parathyroid glands and see if any of them are enlarged or abnormal. More than likely, like I stated before, this is probably just parathyroid hyperplasia related to prior disease activity from your sarcoidosis.
I will call you when we get the PET/CT results, and we will discuss things in more detail at that time.
—Dr Mark Hamblin – 4/24/24
And In The End …
So yeah. A LOT to digest. Hopefully I don’t overthink this and project total disaster. Who me?
There’s a lot more tests and information to be had and explored. I’m confident in both my cardiologist and my pulmonologist. I’ve been doing this long enough to be confident in my ability to absorb the data and advise of my doctors and act or not act upon it.
And now I wait. I think that’s the hardest part. With all data in hand it’s easier to make a diagnosis and find out my prognosis and or treatment.
It’s just so much to take in and process on my own. The only thing I can do is, like every other day of my life: live for today!
If “Livin’ La Vida Sarcoid” has taught me anything: stay in the moment, try not to project, and deal with tribulations as they come. And just keep on keepin’ on!
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