I came home Tuesday night and felt worse due to the transition stress. About an hour before leaving the hospital I experienced what I can only describe as "brain shocks". I was sitting in a recliner fidgeting minimally when it felt like some stuck defib paddles on my head. I had two if these intense "shocks" in rapid succession. Apparently, nobody had ever heard of this. They looked at my monitor and checked for signs of TIA (mini stroke) but everything looked normal. I haven't had a recurrence, but it's still a mystery. My best guess is that is some weird neurologic manifestation of stress.
At home, i've struggled mostly with fever. I have an inflammatory syndrome precipitated three years ago by an Epstein-Barr flare-up (95% of people over age39 have a dormant EBV infection). The outward effect is that physical and emotion stress can trigger an inflammatory response, which manifests as fatigue, fever, or both. Since one might say that OHS is "slightly" physically and emotionally stressful it comes as no surprise that my inflammatory response is in overdrive. This confuses things both at the hospital and at home, where a fever often suggests infection. It has been challenging to get this across and, I imagine, challenging to deal with clinically. But the current approach, which makes sense to me, is to use fever as a lesser indicator and with different criteria for reporting it. Now I will only report a fever of 101 or higher that persists for more than 6 hours in the presence of Tylenol. Fortunately, and predictably, the fever responds almost immediately to Tylenol, lowering it by about a degree or more. Because of this they are using other outward signs to indicate infection of which, at least so far, I have none. But every day is a roller coaster of too hot, too cold, chilled, etc. And it is exacerbated by activity, so even though I otherwise feel like I could do more walking etc, I have to attenuate these activities or end up stuck in a hot room under three blankets shivering. I include this detailed account for the benefit of others who may have a similar autoimmune disorder like CFS or fibromyalgia. If you are asking the question "will this affect my surgical outcome?" the answer is probably no. But to "could this impact my recovery experience and create some confusion for my caregivers", I would say yes, and recommend that you prepare a sheet of paper explaining yor autoimmune disorder and how it manifests under stress. Make lots of copies and give them to a family member who can bring them to you to distribute during recovery as needed. Self-advocacy can be very rewarding.
Finally, I have Thalassemia minor, a common benign form of Mediterranean anemia. There are no symptoms, but your hematocrit tends to show up low (your red blood cells are smaller than normal). There is some question about the reliability of finger-prick (portable and home based INR machines). It may produce an exaggerated INR reading compared to lab machines. Which also raises the question of "which machine is right for the intended purpose of INR levels". My cardiologist is working with me on this to compare the results between the two machines (yes, that means I get pricked AND stuck each time - but hey, for science). I'll report back findings.
Sleep is the greatest healer.
My very best,
Pem
At home, i've struggled mostly with fever. I have an inflammatory syndrome precipitated three years ago by an Epstein-Barr flare-up (95% of people over age39 have a dormant EBV infection). The outward effect is that physical and emotion stress can trigger an inflammatory response, which manifests as fatigue, fever, or both. Since one might say that OHS is "slightly" physically and emotionally stressful it comes as no surprise that my inflammatory response is in overdrive. This confuses things both at the hospital and at home, where a fever often suggests infection. It has been challenging to get this across and, I imagine, challenging to deal with clinically. But the current approach, which makes sense to me, is to use fever as a lesser indicator and with different criteria for reporting it. Now I will only report a fever of 101 or higher that persists for more than 6 hours in the presence of Tylenol. Fortunately, and predictably, the fever responds almost immediately to Tylenol, lowering it by about a degree or more. Because of this they are using other outward signs to indicate infection of which, at least so far, I have none. But every day is a roller coaster of too hot, too cold, chilled, etc. And it is exacerbated by activity, so even though I otherwise feel like I could do more walking etc, I have to attenuate these activities or end up stuck in a hot room under three blankets shivering. I include this detailed account for the benefit of others who may have a similar autoimmune disorder like CFS or fibromyalgia. If you are asking the question "will this affect my surgical outcome?" the answer is probably no. But to "could this impact my recovery experience and create some confusion for my caregivers", I would say yes, and recommend that you prepare a sheet of paper explaining yor autoimmune disorder and how it manifests under stress. Make lots of copies and give them to a family member who can bring them to you to distribute during recovery as needed. Self-advocacy can be very rewarding.
Finally, I have Thalassemia minor, a common benign form of Mediterranean anemia. There are no symptoms, but your hematocrit tends to show up low (your red blood cells are smaller than normal). There is some question about the reliability of finger-prick (portable and home based INR machines). It may produce an exaggerated INR reading compared to lab machines. Which also raises the question of "which machine is right for the intended purpose of INR levels". My cardiologist is working with me on this to compare the results between the two machines (yes, that means I get pricked AND stuck each time - but hey, for science). I'll report back findings.
Sleep is the greatest healer.
My very best,
Pem
