Another Day, Another Doctor

            Adam and I were still on cloud nine after finding out that we had a little baby boy on the way. We started work on his circus themed nursery. It may have been earlier than most soon-to-be parents start on their nursery, but we wanted to make sure that we got as much of it done as we could before we left to go back to Luanda. I would be returning to the States alone at the start of my third trimester and didn’t want the stress of putting a nursery together by myself. We had the nursery and a few other small loose ends to tie up before we hopped back across the ocean to our second home.

            One of those loose ends, Adam's post-op follow-up appointment. Adam had his gallbladder taken out right before Christmas. Everything went exactly as planned, and Adam was feeling much better within a week of the surgery. The gastroenterologist and surgeon had both decided prior to the surgery that they wanted to biopsy his liver because he had been sick with malaria so many times in the past. Dr. Waswick, the surgeon, told me in his post surgery report that Adam’s liver looked great and probably didn’t need to be biopsied but because he was already in there he decided to go ahead and do it. A sense of relief fell over me hearing that everything looked great. We just needed to wait on the biopsy results to support Dr. Waswick's visual findings. Looks can be deceiving, though. The biopsy results painted a very different picture for us.

            We met with Dr. Lievens, the gastroenterologist, for a follow-up to discuss the biopsy results of both Adam's gallbladder and liver. The condition of Adam's gallbladder was much worse than we had originally thought, so it was a good thing that Adam had it removed. Dr. Lievens then explained to us that the liver biopsy results showed non-necrotizing granulomatous which could be caused by one of two things in Adam’s case: medication or a condition known as sarcoidosis. Because Adam doesn’t take any medications and it had been several months since his last bout of malaria treatment, Dr. Lievens ruled out medication and told us that it was most likely sarcoidosis. It was still a surprising find considering Adam has no known family history of it, is male, and is of the Caucasian race. He explained to us that sarcoidosis is an autoimmune disorder that can affect multiple organs. It cannot be cured but can go into remission with little to no treatment. He went on to tell us not to worry because people don’t die from sarcoidsosis of the liver and that all of Adam’s tests indicated that his liver was functioning just fine. He told us that the organ most doctors worry about when monitoring sarcoidosis is the lung. But since Adam had zero respiratory symptoms, it wasn’t a concern at this time.

            My mind was racing as I tried to digest all of this new information. Adam had several scans done during the process of trying to pinpoint his gallbladder issues, but one test result in particular stuck out in my mind because it showed a hardened lymph node in the lung. I brought it up to the doctor, who had completely forgotten about that small detail considering his main focus had been on Adam’s liver and gallbladder. Dr. Lievens decided it was better to error on the side of caution, so he ordered a CT scan and referred Adam to Dr. Son Truong, a pulmonologist.

            Adam had the CT scan done, and we anxiously waited for the results. The radiologist report stated that Adam had bilateral pneumonia. Even though the diagnosis wasn’t good, especially since we were scheduled to leave for Luanda the next week, we were relieved to know that it was just pneumonia and not something more severe. We headed in to see Dr. Truong to find out what his plan was to tackle this unwanted infection inhabiting Adam’s lungs.

            Dr. Truong introduced himself to us and then did a thorough review of Adam’s health history and current symptoms, which of course were none. Dr. Truong then proceeded to explain to us that he disagreed with the original radiology report. Instead, he thought that the results were more indicative of stage two sarcoidosis rather than bilateral pneumonia. Dr. Truong told us that he would need to do a lung biopsy to be sure that what he was seeing on the scan was indeed sarcoidosis. He also wanted to have Adam do a pulmonary function test to get a baseline to help him better monitor Adam’s lung function.

            A million questions flooded my mind. I began asking Dr. Truong question after question, sometimes not even giving him time to answer the first before I asked the second. He explained to us that he may not treat Adam since he was only stage two. Adam had a sixty percent chance of going into remission without treatment over the next three years. But if it did advance to stage three then he would treat it with an intense steroid regimen. It wasn’t until stage four that we would need to consider a lung transplant. Of course this was way down the line considering we hadn’t even received a positive sarcoidosis diagnosis yet and were still hopeful for complete remission, but the talk of it opened our eyes to the seriousness of Adam's condition.

            I had been trying to stay calm throughout the entire process, but as Dr. Truong began to go into detail about the lung biopsy, my calmness quickly disappeared. I could feel the pregnancy hormones creeping up on me, and the tears welling in my eyes. Adam tried to reassure me that everything would be just fine, but deep down I knew he was just trying to stay strong for me. Neither of us were expecting any of this, making it even harder to swallow. Obviously we weren’t getting on a plane to Africa anytime soon, so we pushed our flights back a couple of weeks to try to get everything sorted out.

            Adam and I decided that it was best for me to not be at the hospital during his biopsy. It was winter and the flu was running rampant. The last thing we needed was for me to pick up something lurking in the waiting room. Adam’s mom and cousin went to the hospital to be with Adam during his biopsy, and my mom came to Wichita to try to help keep my mind off of things. The biopsy went great, and Dr. Truong was able to collect eight to ten samples from various places on Adam’s lungs. Now we just had to wait for the biopsy results to come back. Easy, right? Hardly.

            It wasn’t but a few days before Dr. Truong met with us again in his office to go over the results which ruled out tuberculosis and supported Dr. Truong's sarcoidosis diagnosis. There were two spots on Adam’s lungs that concerned him and if left untreated were at risk for turning into scar tissue. He started Adam on steroids and then scheduled repeat scans for a later date when the steroid treatment had been completed. Dr. Truong also told us that he wanted to contact a pathologist at the Mayo Clinic who specialized in lung biopsies. He wanted a second opinion just to be sure that he was treating the right disorder. Of course we were on board with that decision because a second opinion certainly couldn’t hurt.

            Adam’s mom needed to go check on their place out in Las Vegas, so she invited us to join her 

as a way of getting our minds off of things. Adam had just started his steroid therapy and our trip to Luanda had been postponed, so a week in Sin City didn't seem like such a bad idea.

            We were finally feeling relaxed and enjoying the beautiful weather in Vegas with Adam's family when we received a call from Dr. Truong. The pathologist from the Mayo Clinic had reviewed the lung biopsies. Apparently the tissue samples had all of the characteristics of sarcoidosis except for one major characteristic, so he couldn’t say with absolute certainty that Adam had sarcoidosis. Because of this, Dr. Truong wanted Adam to stop taking the steroids in case it was something else. He then referred Adam on to Dr. Moore, a doctor who specialized in infectious diseases.

            Once back in Wichita, Adam met with Dr. Moore who again took down a thorough health history as well as information about where Adam has lived, what kinds of things he could have been exposed to and so forth. Before leaving that day, Adam had seven vials of blood drawn and sent off for testing. The doctor was casting a large net to try to get to the bottom of Adam’s mysterious lung disease. Again, we sat and played the waiting game. All of his test results came back negative which meant he didn’t pick something up while swimming in the Congo River when he was younger or from any of the pesky mosquitoes that swarm Luanda. Finally a little bit of sunshine on our constantly cloudy and rainy day, or so we thought. The labs may have all been negative, but they did reveal some concerning blood counts. Dr. Moore contacted Dr. Truong with the lab results and recommended that Adam meet with a hematologist. Another day, another doctor.

            We were in luck, though, because Dr. Truong had a younger brother who just happened to be a hematologist and agreed to meet with us. We sat in Dr. Quac Truong’s office completely exhausted and unsure of what to expect or what to think at this point. We had already seen four doctors in the past two to three months and were waiting on our fifth doctor. We had more questions now than answers. It all started out as a simple laparoscopic surgery to remove an underperforming gallbladder but turned into something far bigger than we could have even imagined.

        Dr. Quac Truong was concerned about Adam’s low white blood cell count as well as his low platelets. He didn’t want to clear him to head back to Africa until his white blood cell count was up to at least a 3.4, which is still considered low but acceptable in our situation. We pushed our flights back again and waited in hopes that Adam’s immune system would bounce back. A repeat lab test two weeks later showed that Adam's WBC count was sitting at a 3.4, just what he needed to head back to Africa.

            Based on all of the tests performed and the results found, the group of doctors ultimately came to the conclusion that Adam had sarcoidosis. The only way to be certain would be to do an open lung biopsy, something we weren’t ready to do just yet. Adam continues to see Dr. Son Truong, the pulmonologist, so he can monitor Adam’s lung function. There was no change in lung status at his six-month check-up. Adam will have a one-year check-up this summer. We are hoping to see some improvement on the CT scan.

            Health is something many people take for granted. Adam and I are both young, lead a fairly active lifestyle, and eat healthy. Well, we eat healthy for the most part. I would be lying if I said the occasional Chipotle burrito or cheeseburger pizza didn’t pop up in our diet. I knew that our life was about to change in a drastic way because we were about to enter the wonderful world of parenthood. But I never could have imagined the curveball life threw us and that Adam’s health would be an issue, especially not at the age of twenty-seven. Never take anything for granted and always enjoy every moment.