Hello All, I want you all to know we appreciate everyone reaching out to see how we are doing! Really and truly means everything to us to know we have such a support system! ❤️❤️❤️ I want to keep everyone updated on his progress and it was suggested that this site is a good way to consolidate the information.
So where to start... On January 5th, Marc came down with fever, chills, and muscle soreness so we assumed it was COVID as I had experienced those exact symptoms when I tested positive over Christmas. Surprisingly, he tested negative on both rapid and PCR! His symptoms shifted over to a more of the gastrointestinal kind so he scheduled a Virtual appointment with his PCP where he reported his ongoing symptoms and negative tests. The doctor told him that she thought it was likely still Covid in spite of the test results. She extended his letter to excuse him from work as he was still feeling poorly and went in for another Covid test... once again, negative on both. Symptoms continued over next few days when it occurred to me that perhaps it could be salmonella from improper washing after handling our Backyard Chicken’s eggs. He brought it to the attention of his doctor and she prescribed an antibiotic without any testing to confirm.
He felt a little better over those 5 days he was on the antibiotics (but still only eating the BRAT Diet), and even went back to work for the week! After he finished the antibiotics he started declining further. We couldn’t understand why this was happening. He was constantly in pain with cramping, bathroom visits every two hours (even throughout the night), and couldn’t even drink a sip of water or take a bite of white toast without initiating this horrible cycle. He had already dropped nearly 20lbs, having a starting weight of 185lbs before getting sick. Realizing that this wasn’t going to get better on its own he contacted his Gastroenterologist and they ordered full fecal screening.
After a couple days results were in and it came back positive for both Giardia (microscopic protozoan parasite) and Campylobacter bacteria (common food borne illness). Proper medications were prescribed, but by this point Marc‘s gastrointestinal system was so inflamed that absorption of the medications was questionable. He went to the emergency room at NWH on Friday 2/5 and was admitted after bloodwork and CT Scan showed his entire Large Intestine was inflamed with colitis (Pancolitis). Following this was a sigmoidoscopy which confirmed a diagnosis of mild/moderate Ulcerative Colitis. They started treating with the less harsh drugs to see if they made any improvements but unfortunately he was worsening. Steroids were started midway through his 12 day hospitalization at NWH and though his inflammation markers in his blood work came down significantly, his symptoms remained unchanged. He started experiencing splitting headaches and double vision over next couple days and on February 11 when I was getting ready to leave (visiting hours were only 3hrs though the nurses were kind pretending I wasn’t there 🤐), I noticed that his left eye wasn’t tracking to the left and informed the nurses.
The next day while kids were at school and I was at work, I received a call from the neurologist at NWH reporting that had a bad night - his heart rate dropped low as did his potassium levels. He also informed me that Marc was given an MRI and that his Pituitary Adenoma had grown slightly. —- Side note: Marc was diagnosed a year and a half ago with a benign tumor on his pituitary gland called an Pituitary Adenoma. These are very common and are almost entirely benign. The issues they can cause are whether they are hormone-secreting or via the “mass effect” by growing and pushing on existing structures and sensitive tissues like optical nerves and/or Carotid artery. We have been monitoring it with one of the foremost specialists in this specific field at NYU Langone.
I left work early and went straight to the hospital. When I saw Marc, his eye had worsened significantly. It was not able to move at all, his pupil was fixed & dilated, and his eyelid was closed- only able to open midway. Neurologist and Neurosurgeon (who also trained under Marc’s specialist) explained that 3 of the nerves in his eye were not working and all agreed that it was not an emergency situation as his vessels were not occluded and it did not pose an immediate health risk. They changed the type and frequency of his steroids to see if that would help not only his colon but also the ocular nerves affected. It was at that point we realized he needed to consider going on a more serious medication called Remicade (immunosuppressive drug which has serious side effects).
Even though there were no changes symptomatically, we weren’t ready to commit to a potentially lifelong medication of that level if other, more safe options were available. Over the next couple days, the Doctors said if he wanted (and if he thought he would do better in his own bed & bath), could switch to oral medications and go home. He was discharged on Tuesday 2/16. He was home and his condition worsened drastically.
On Thursday 2/18, under the advice of his primary Gastroenterologist I brought him into White Plains ER. They went through all the same testing again (CT/Bloodwork/Sigmoidoscopy/MRI) and his results came back worse than they were before going in to the hospital the first time. The CT confirmed continued Pancolitis, his blood work showed his CRP (inflammation markers) higher than before, and his Ulcerative Colitis was now categorized as Severe. The neurosurgical team at WP also felt that his tumor needed to be addressed very soon, so calls were put in to his specialist in NYU.. of course it being the weekend things take a little longer. He has continued to lose weight... upon discharge from NWH he weighed 156lbs. His body is wasting away from lack of any nutrition over the last 40 days. With the continuation of his pain and inability to sleep due to the frequency of bathroom visits and cramping, he finally decided to go on Remicade. After the Infectious Disease doctors cleared him, he got his first IV infusion this evening, Saturday 2/20 while listening to the UFC fights!