Di Nowak’s Sarcoidosis Journey – Part 1

Sarcoidosis is a disease that causes abnormal collections of cells to form as nodules. These nodules are commonly found in the lungs, but any organ can be affected. It is estimated that there are between 1 and 40 cases per 100,000 people in the United States, and I am priveledged to bring you one person’s story. Please join me for the next couple of Wednesdays to read about Di’s journey with Sarcoidosis. I do apologize for the difference in font styles, but I’ve been tryig all morning to unify the font and, for whatever reason, I can’t make it happen. 

Sarcoidosis

I promised this blog a while back, and while you can say many things about me, being a procrastinator isn’t one of them, this is a direct result of the Sarcoid disease process.

So, some background information, I am hearing impaired and have been since I was a child.  Because of that, I have been proficient at lip reading since then, however, due to this, when it is more than a standard doctor appointment, I take my wife with me to make sure that I don’t miss anything.

I am also a type II diabetic whose diabetes is controlled with oral medication and diet.  I see a Rheumatologist initially I was referred to him because of an elevated ANA titer (anti-nuclear antibody) found during my yearly physical.  His initial testing of me showed markers for Lupus but because I had never had an episode he couldn’t diagnose me with that.  Subsequently he is following me for RA with minimal joint involvement.  I see a nephrologist (kidney doctor) because I have a low GFR (Glomerular Filtration Rate) which measures kidney function, also found during an annual physical.  Anything having to do with kidney function in a diabetic is something you need to be aware of.  I met with my nephrologist once and he told me to stop a medication prescribed as a preventative medicine and if follow up testing showed improvement I wouldn’t need to see him again, since I was already seeing more than my fair share of specialists.  Further testing done, no follow up needed with the nephrologist.

This journey (as I call it) started 5 years ago with the simple statement, “I can hear my heart beat in my ears”.  Why was this cause for alarm?  Well, my wife’s mother had passed away of a heart attack and one of the statements she had made shortly before that heart attack was the same simple statement.  Consequently, I promised to make an appointment with my doctor.

I went to that doctor appointment not expecting it to be any big deal.  My doctor ran a simple breathing test in the office and told me that I had restrictive lung disease and that she felt that I needed to see a pulmonologist and that my wife could better explain it since she is a respiratory therapist, so home I went referral written.  I got home and shared the information, as well as the doctor that I was being referred to.  My wife was happy with the choice of doctor’s since she had worked with him at the hospital.

I had to have a breathing test done prior to my appointment with the pulmonologist.  Once that test was done the doctor’s office called, and an appointment was made.  We met with the doctor, he went over the results of the breathing test and because it wasn’t conclusive he said that we needed to have a chest CT done.  The chest CT was scheduled and done, a follow up with the pulmonologist followed.  Again, the results were inconclusive I had some nodules in my lungs that he wanted to follow and that we should do a follow up chest CT in 6 months and see him after that was done so that we could go over the results.  If at the end of 2 years the CT showed that things hadn’t changed, I could then go to seeing him 1 a year.  One of the things that we did conclude was that I also was experiencing shortness of breath.  He thought it would be beneficial to refer me to a cardiologist to rule out heart issues being the cause of shortness of breath.

The cardiologist called, and he too wanted tests run prior to my appointment with him.  He ran a treadmill test, as well as did an echocardiogram.  We met with him after these tests, nothing was wrong with my heart and there was nothing conclusive that would account for my shortness of breath, or the beating of my heart in my ear.  However, he wanted me to have a heart CT done.  However, I was informed that insurance doesn’t cover it.  So we could see if we could get me enrolled into a clinic trial being conducted by Duke University.  I filled out a mountain of paperwork and was luckily accepted into the Duke trial.  After that test was done I went back to meet with only to be told that the results were normal and that I could see him 1 a year.  As we were walking out of my appointment with him, I was reading my end of appointment summary and discovered that I had 1 moderate and 1 mild leaking valve.  I came unhinged, and said to my wife “what does he mean I don’t have any heart problems?”  She explained to me that in the medical world this was not cause for alarm.  Unless there are more than moderate leaks they are considered inconsequently since they don’t do anything for them. 

Things stayed status quo, in that, we went to the standard yearly follow ups to the pulmonologist and cardiologist with no changes.  I had routine follow ups with my Rheumatologist, which included routine lab tests.  Until August of 2012 lab results from my previous months follow up showed that my GFR (Glomerular filtration rate ) was dropping again (it should be greater than 60 and mine was now in the 30’s) and he wanted me to go back to my nephrologist. 

He wrote the referral and back to the nephrologist I went.  He wanted labs run monthly so that he could continue to monitor my kidney functions.  Every month I went in, and we went over lab tests and what he thought was going on, which he really had no explanation for.  I was faced with informing my family with the news that I was in stage 3 kidney disease over the Thanksgiving holiday.  At my December appointment I asked him when he was going to do something other than lab work and was told that when my GFR dropped below 30 he would schedule a biopsy.  January’s labs came in at 29, so we were now facing a kidney biopsy.  He explained that they would take multiple samples under radiology guidance and that these would be sent to the UW for reading.  While we waited to get the biopsy scheduled February’s labs came in at 24.  On the day of the biopsy exactly 1 week later my GFR had dropped to 23.  My doctor called to review the pathology report basically it indicated that I had pristine kidneys.  He also informed me that he was relocating to Seattle.  He offered to refer me to someone local, however, since we had established a good rapport and he didn’t insist on my meeting with him every month I felt I was better served to stay with him.  So now we were faced with trying to figure out what was causing the declining kidney functions.  The next step, thyroid/parathyroid nuclear medicine test to see if this was part or entirely the cause.  That could be an explanation for the severe muscle cramps I had been experiencing.  While I was close to stage 4, my lowest GFR was 17, stage 4 was 15 or below.  Since my labs showed a creatinine of 1.6 times normal and my calcium was almost a full point above normal even though all calcium (or as much possible, and if you’ve ever read an ingredient label you know how hard it is to find food, or anything for that matter, that doesn’t have calcium in it).  The results were done from the nuclear medicine test, I was subsequently diagnosed with hypercalcemia, and hyperparathyroidism as well.  I was started on a medication that was given to kidney disease patients that were either in stage 4 kidney disease or on dialysis.  He wanted to continue to run monthly lab tests and confer via phone after them to determine what if any changes needed to be made or additional/different tests needed to be performed. 

Please join me next Wednesday for part two of this very personal piece. 

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