I’m writing this post in my makeshift office/ dining room because going outside was so 2019. Right now we are in the middle of a Global Pandemic and everything is shut down and both me and my husband are working from home, like many people. The current Novel Coronavirus (COVID-19) crisis has changed our day-to-day lives and that includes changes for those with chronic illnesses.
I receive a monthly IV infusion to manage my Crohn’s Disease. This medication, like many that are used to treat IBD, suppresses my immune system and many patients have been worried about continuing these treatments because it puts us at a higher risk to contract the Novel Coronavirus (COVID-9). As I always say, I don’t give medical advice and you shouldn’t listen to random people online when it comes to making medical decisions for yourself or a loved one. However, for this, I’m breaking my rule because it’s got to be said and it needs to be repeated. DO NOT SKIP YOUR MEDICATION DOSES! Please, if you are concerned, speak to your doctor. Do not change anything in your drug regimen without consulting a medical professional that is familiar with your case and knows your history.
Yes, the Novel Coronavirus (COVID-19) is awful and we are still learning so much about it. However, you do not want to be in a flare-up right now if you can prevent it. Imagine you get so sick, you need to be hospitalized. Hospitals are still operating and taking care of patients with non Coronavirus related issues. We can’t shut down chronic illnesses like we are with non-essential businesses. If you need to be hospitalized because of a flare-up, most hospitals are not allowing visitors at all. The hospital I go to is only allowing one visitor if the patient is a minor or at end-of-life. Other than that, you have to be there by yourself. No one can hold your hand in the ER or keep you company during your hospital stay.
Last week I received my monthly treatment in our new world and I discussed my experience on Amber J. Tresca’s podcast, About IBD. The most important thing I want to stress is that I felt safe and confident in the level of care I received and I know I have a better chance of staying healthy while on my meds. Think about it . . . have you ever thought about skipping your medications during flu season every year? Probably not. Listen, my last flare-up spiraled into a total colectomy that resulted in multiple hospital stays post-op with lingering abdominal abscesses and a whole mess of complications. I was on medical leave for six months, I couldn’t eat solid food, and I spent about 10 weeks over a four month span in the hospital. If that had happened this year, I would have been by myself after my surgery and every day I was hospitalized. And I’m sorry to those that are currently in the hospital during this pandemic and have to go it alone. It can’t be easy.
Many patients receive their medications via a self-administered injection that they get at home, which is a great option in this current pandemic. However, not everyone has that choice. So, if you’re like me, and you have to go to a medical facility to receive your treatment, please know there are new systems being put in place for your safety. Call ahead to find out what to expect. The facility I go to currently does not allow visitors and screens you before you are allowed to enter the building. If you have been exposed to anyone with symptoms or a confirmed case of COVID-19, please ask what are your options to receive your treatment.
Please be patient with health care workers right now. They are scrambling to adjust to this new normal and working with what they have to keep us and themselves safe. Allow for extra time since you most likely will be screened before being allowed to enter. I chose to wear a mask that I happened to have leftover from my medical supplies from last year. I know the mask isn’t filtered, but it kept me from touching my face while I was out. The nurses and staff were also wearing masks the entire time and they are not allowed to remove them while working.
Patients who had appointments were all moved to a teleconference. They are trying to limit the number of people who have to physically be there. The building was empty compared to a normal day. Patients receiving infusions were kept in separate exam rooms to keep up with social distancing. Normally we are separated by a few inches and a curtain, however, my facility had to improvise and make the necessary changes. I have to go again at the end of April and by the looks of it, the current system will still be in place. I’m sure there will be more changes by then because every day we are learning more and more about this.
Now for doctor appointments . . . I happened to have one this week. For a simple follow-up appointment, I got to say, I love the teleconference option and hope this continues into the future. It was so easy and I could do this from work and save so much time since I don’t have to drive and check-in and sit and wait for the doctor. I was sent the teleconference information through my patient portal and logged in right at 2:30 p.m. for my appointment and there was my doctor’s Nurse Practitioner sitting in her home office. She had access to all of my recent lab orders and we were able to discuss the plans for my care going forward. Check with your doctor’s office if you have an upcoming appointment to see what procedures they have put in place.
I don’t know how this is going to play out in the long run, do any of us really know? I just know, we are going to have to adapt to this new world and these constant changes. But anyone with a chronic illness can tell you that we know all about adapting to quick changes. For now, stay safe out there, and stay home and wash your damn hands!