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 ub the United States, and I am priveledged to bring you one person’s story. Please join me for he next couple of Wednesdays to read about Di’s journey with Sarcoidosis.
During the end of 2013 I was also faced with the news that my primary care physician was going to be relocating their practice. So, I was faced with trying to find a new doctor. I met with one, and actually had decent feelings about them being a good choice. However, as time progressed, I realized that they really weren’t meeting my need as someone who could bring all the various specialists together and map out a plan of treatment. Everyone was operating separately, and that wasn’t doing much for continuity of care, left hand did not know what the right hand was doing. I was getting more and more frustrated with paying max dollars to a bunch of doctors (specialists) who I didn’t feel were helping me, told me nothing had changed and I needed to schedule a yearly follow up.
There are advantages to having a wife in health care, one being that she knows a lot of doctors. Since the new primary care doctor wasn’t really working out as hoped, she suggested a doctor that also happened to be a pulmonologist. She described this doctor to be “like a dog with a bone” she won’t give up until she has answers. The initial meet and greet appointment made, we discussed everything from soup to nuts. She asked if I was willing to give up my current pulmonologist, since she didn’t want conflict of care, I told her I was. She asked if my previous pulmonologist had ever shown me the CT of the nodules he was following, we told her no. She took us to her office and brought up the CT, we were amazed when we saw all the nodules since the previous pulmonologist had said a few when in actuality there were ~ 30. She told us that she wanted to have a radiologist that she strongly trusted look at the chest CT and get their findings. She advised that I no longer see my cardiologist since I wasn’t being treated for anything, even though it was noted that I had diastolic dysfunction. She asked if I had sleep apnea, or problems with sleep. My answer, nope, my head hits the pillow and within 5 minutes I’m out. She asked whether I woke up feeling like I had a good night sleep or woke up tired, I told her I woke up tired all the time. She said she wanted to schedule a sleep study that she wanted to do another breathing test, and to have another echocardiogram done, follow up after those were done. All testing done, we walk into the follow up anticipating good news, we weren’t so fortunate. Apparently my sleep study was terrible while I might fall asleep I didn’t reach REM until 167 minutes into the test, was in it very briefly and then went into the final stages of sleep until I woke up. The doctor that read the sleep study test had asked if I worked and when he was told yes he said I don’t know how she possibly does it. I told her, I have to work to keep my medical benefits and to be able to pay my bills. She also told us that she believed that I had Sarcoid. At last something; even though neither of us know what that meant, at least it was the first time that someone actually was saying that there was something causing the symptoms. She told us that she wanted to re-run the sleep study so that they could determine what kind of sleep apnea machine I needed and that she wanted to schedule me for lung biopsies to confirm the diagnosis of Sarcoid since my labs didn’t indicate it, she still felt that was what we were dealing with.
My daughter had come up to be here for the biopsies. That night while we were sitting around watching TV both my daughter and wife brought up what they thought were neurological issues as well and indicated that they thought I should see a neurologist. We scheduled an appointment with my PCP to discuss things and she agreed based on symptoms that I should have a head MRI done first. I get to where I am supposed to have my MRI done and in the discussion with the technician that will be doing the test we determine that they are not going to be able to do the contrast because of the kidney disease and low GFR. I offer to sign a waiver releasing them of all liability but they still won’t do it. So we do the MRI without contract. I hear from my PCP that even though the MRI doesn’t necessarily indicate any issues, due to symptoms, she feels that I should be a neurologist.
We are at the follow up appointment with my pulmonologist to discuss the biopsy results as well as the second sleep apnea test. She comes in and starts with the sleep apnea. Apparently, they could not regulate me with C pap, so I would have to go on Bi pap instead. The moment of truth, she had biopsied roughly 16 locations and had sent them off for reading and they did indeed show that I had Sarcoid in my lungs. Treatment, steroids, and while some people with Sarcoid can be on them for a short period of time and then come off, I was not going to be that fortunate. Her concerns, my diabetes would go out of whack or I would gain weight because I would want to eat everything in sight. We finally had some explanation for the shortness of breath.
On my subsequent follow up 30 days after starting Bi pap and Steroids, on paper my sleep apnea was resolved but if anything I felt more worn out, the water retention was terrible, as were the muscle cramps. Well, the steroids didn’t have the effect that she anticipated, diabetes and weight in check, and they didn’t dramatically change my life, in fact I felt worse. I asked if we could taper off the steroids since they weren’t working as she had hoped and that we could always go back on them. She didn’t want to take me off of them completely because they were helping my kidney functions but she was willing to drop them down to 5mg a day. She wanted to do additional testing, a C-PET test (cardio pulmonary exercise test) to see what gave out first, my heart or my lungs, as well as send my case up to the University of Washington to see if there was something she was missing or some other form of treatment we needed to explore.
I am blessed in the fact that while my mom is 86 years old and is on oxygen she is well enough to live on her own and spend the spring/summer months at her lake property. Sandi and I go down on most of the weekends to spend time with her and tackle maintenance. One weekend we were faced with the grass being too long to use the electric mower that we have, so we asked the neighbors if we could borrow their old push style (you push it and it makes the blade spin) mower to do the grass. I decided that I would go up and give her a hand on the parking level. I’d work for a while and then stop and catch my breath. Had done this a couple of times and was in the process of doing some more cutting when I hit an exceptionally thick patch, the mower stopped and I didn’t. I heard and felt a pop on the left side so set down to rest. Sandi came over and asked what was wrong, I told her what had occurred, she asked if we needed to go get an X-ray. I said no since I knew that there isn’t much they can do if you break a rib other than wrap them. We agree that if I am not better in a week then I will contact my PCP. Sure enough I am still having issues so we go see my primary and she wants to get an X-ray, sure enough, I broke a rib. The brittle bones go back to the hypercalcemia and hyperparathyroidism and the months where my body was leeching calcium from my bones. I ask whether or not we can get a bone density test done not only because of that, but because my mom suffers from osteoporosis. She agrees that it would be a good idea.
I hear back from UW regarding my C-PET and in order to get it done so that I can have the results when I a next scheduled to see my pulmonologist it was scheduled for 2:00 in the afternoon. We made arrangements to have a friend drop Sandi off at my work since they advised that you have someone drive you home afterwards. I did my prep for the C-PET, the biggest was no caffeine the day of the test. I argued that if they wanted accurate results then I shouldn’t hold back caffeine. Sandi said that she understood that, but that it was what they required. I did good until about noon the day for the test, then I got a headache that is beyond a migraine and probably one of the most intense pains I have ever experienced, on a scale of 1 to 10 this was 100. I managed to make it down from my office to clock out and then out to my car. I indicated to Sandi that she was going to need to drive and once I was in the car I told her to call UW and reschedule the test since there was no way that I could do it feeling the way I did. Test rescheduled, and thank God, this time it was first thing in the morning so lack of caffeine shouldn’t be a big deal. I also got a letter from the UW Interstitial Lung Disease department stating that they had received my case notes, that they were being reviewed and once that was complete they would assign me a doctor and contact me to set up an appointment.
For those who have never had a C-PET test, let me tell you that they aren’t the worst thing in the world, but the whole goal is to push you beyond the limits that you feel comfortable in. That said, we arrive and get checked in and by that point I am already short of breath because we were late getting there due to traffic so it was a rush to get to where we needed to be. Luckily, by the time that I was called back the shortness of breath had all but subsided. The tech who was performing the test explained what would occur, basically they would hook me up on an EKG machine to monitor my heart and a pulse oximeter to monitor respiration, oxygen saturation and pulse rate, start me out on a tread mill walking slowly then gradually increase the speed, once I got to 3 MPH he would start to increase the incline. He then did some base line testing, once that was done and all my leads were hooked up he went to get the doctor who would be present during the test. The doctor came in, asked me some questions and again explained what they would be doing. Both the tech and the doctor assured me that when I said I was done they would stop. So, off to the races we went and as explained everything started out fine. I hit the 3 MPH mark, and while that was a struggle I was keeping up but tiring. We started the incline and that was where it really got hard. I can’t tell you at what point I said I was done, however, I can tell you that both the tech and the doctor encouraged me to keep going, so I did. Several minutes passed and probably at least one more incline occurred before I told them that I was done and this time they didn’t try to get me to go on. So they slowly bring me to a stop and from there I move to a chair. They explained the reason for encouraging me to go on was based on what they were seeing and neither my heart nor lungs were in distress at that time and they wanted to push me until they could get a clearer picture of what was occurring. The residual side effect that lasted through the better part of the day was that my legs felt like lead.
The next thing scheduled was my meeting with the doctor at UW Interstitial Lung Disease department. We get taken back to a room and are meeting with the nurse first. We explain that we have been going through this for 5 years trying to get answers. They make it clear that I am not to be pushing push mowers and that if I am around airborne irritants that I should be wearing a mask. I am then seen by their Respiratory therapist who wants to walk me around with a pulse oximeter to check my oxygen saturation. The doctor comes in and introduces herself and tells us that she has reviewed all my case notes and the reason that she was chosen as my doctor is that Sarcoid is her field of interest. I am blessed in the fact that the majority of my doctors want the answers as much as I/we do. We talk about everything that has been done and the results with the exception of the C-PET which she doesn’t have a report on. She says that she wants to do a heart MRI because she is concerned that the Sarcoid has gone to me heart as well. Depending on what that shows we will possibly follow up with a heart PETSCAN to determine the amount of involvement. Depending on that, we will possibly have to discuss going on Immuno-suppressors. I ask if I can have the MRI done locally (Lakewood/Tacoma area) rather than have to come back up to UW to do so. She indicates that she is fine with that and she will send my visit notes as well as my request to have the heart MRI to my regular pulmonologist.
Please join me next Wednesday for the next post in this series. Many thanks to my friend Di for giving us this very personal look at Sarcoidosis