Living with GBS in times of Influenzas and Covid-19

 This journey I have been on since my diagnosis of Guillian Barre Syndrome, has been filled with roller coaster rides going up, down and has turned my life upside down. Facing reality, negativity, depression, plenty of tears but seen blessings, silver linings and positivity too. My first two years I faced many challenges just to stay alive, in-hospital complications which some will be with me always. Those complications, though resolved, still puts me at higher risk for infections especially respiratory. Now, living in a LTC facility, I will have the increase anxiety during our annual flu season (Oct - Mar). 

Being a quadriplegic and GBS, my nerves were damaged to the point where I have some diaphragm dysfunction affecting my respiratory system. I can no longer able to do those deep coughs to bring up any phlegm that sits on my lower lobes. To assist with coughing, twice a day I have to my lung volume recruitment (LVR). They take the resuscitation bag and push air into my lungs and I hold my breath for 10 seconds. I do that 3 times. With having repeat pneumonias while in hospital (ventilation assisted pneumonia (VAP), hospital bacterial pneumonia (HAP) and Aspiration Pneumonia) it has weakened my lung function. One of the measurements they use to determine if you need oxygen is calculating my O2 sats. As I have a history of asthma, my O2 sat was probably 98% normally. Unfortunately, my new normal is 91% - 92%. This is another reason for doing the LVRs twice a day, allowing my lungs to expand too. There is a standing order that if my oxygen saturation goes below 88%, we will need to monitor if I would need a transfer to the emergency to receive any supplemental oxygen. Of course, I had a tracheotomy complication where while changing my tracheostomy tube, it damaged three of the cartilage rings of my trachea. As cartilage cannot regenerate itself, the damage is permanent and the medical term is “A-frame trachea” or in other words, I have a permanent partial obstruction of my trachea. Having an A-frame trachea now increases my risks for complications when I am intubated/extubated moving forward. The common complication will be pneumonia. In April 2020, I had to have an emergency appendectomy requiring a general anesthesia. As I was still intubated after leaving the OR, I was sent to the ICU for extubation and monitoring for any respiratory complications. Luckily, the extubation went well, but by day 2 post-op I was diagnosed with postoperative bronchopneumonia. With IV antibiotics, it had resolved within a week. Just to point out, my surgery was like 20-30 minutes in length. If I had a lengthy surgery, I do not know if the pneumonia would more serious. Before leaving the ICU (August 2017), my internist let me know, if I needed the trachea repaired, it would be a major surgery and in all likelihood I would end up with a permanent tracheostomy to allow me to breath. Furthermore, with my A-frame trachea, if there are issues with intubation, this too could end up with me having a permanent tracheostomy. Having a tracheostomy, I would definitely have to transfer to another LTC facility who has the capacity to care for residents with a tracheostomy. Scary and concerning I know, but that is a reality I will need to face to ward off getting infections. 

Between the time of August 2018 until February 2020, I have been able to prevent contracting pneumonia (especially during the flu season which is Oct-Mar), but did come down with 2 cases of laryngitis (upper respiratory tract infection - URTI). Definitely not fun, as I was quarantined to room until it was resolved, which took about 2 weeks to do so. During this time, the staff monitored me for fever, coughing up phlegm and watched my oxygen saturations. Fortunately, the laryngitis resolved on its own without needing to go to the emergency for oxygen. To be medically safe, if I ever came down with pneumonia, I am thinking I will be heading for an inpatient admission - to be able to receive IV antibiotics, receive supplemental oxygen if required and a respiratory technician (RT) to monitor my condition as well as knowing my medical history if I would need ICU monitoring in case I require intubation. 

With the arrival of 2020, it has brought us a coronavirus (SARS-2: systemic acute respiratory syndrome). It started off as a respiratory virus beginning in China, and quickly spreading to Europe. By March we basically faced a global lockdown as countries tried their best to contain the virus to stop the spread of the virus. Unfortunately, many countries now are facing a second wave of spiked new cases, increase hospitalizations with COVID-19 virus and this has increased stays in the ICU too. With the combinations of the on-going spread of COVID-19 virus and now that we are into flu season, the strain on our healthcare system will be showing with hospitals reaching capacity of hospital and ICU beds. Personally, I have to be more vigilant than ever about the people I have to interact with to avoid infections. The main thing I have control of and that is to stay in my room. I will get in my chair, but I won’t go to the dining area for meals. Therefore, I would interact with my staff and maybe my 2 designated persons. 

From Mid-March to Mid-May 2020, my facility had to be put on facility outbreak protocols due to 4 staff had contracted COVID-19 virus (thankfully no residents contracted the virus). So there was no visiting of family and friends unless you are end of life (palliative) where you were allowed one designated persons. Alberta’s Chief Medical Officer realize the impact on a resident’s emotional and mental health by not having that physical contact with loved ones. As I have Internet in my room, I count myself very fortunate to be able to do Zoom, Facebook video chats and FaceTime to have visual visits with family and friends. Plus I had phoning, texting, emailing and Facebook as other ways to stay in touch with loved ones too. It does help, but there is something special seeing someone in person to have a conversation with. It brings a smile to my face and brightens up my day for sure. From May 28 to Oct 11, I have enjoyed my outdoor visits, my community walks near my facility, and allowing two designated persons for indoor visits (my physiotherapist and a friend). 

Unfortunately, the unenviable did come - Covid-19 arrived on my wing on the morning of Sunday October 11. It started as one resident but within a week, we now have 6 residents (two in the hospital) and 1 staff who have tested positive. Happily my result is negative and probably be tested one more time to ensure all residents are negative. Reason being the incubation period for this virus is 2-14 days, so might initially tested negative, but the next time you test you could be positive. Nasty virus for sure. I would be lying, if I said I am not concerned and anxious about getting it myself. I do feel reinsured that the facility and staff are doing the best the can to keep me safe and healthy during this stressful time. 

From the standpoint of which is worst - Influenzas or Covid-19? Hands down the worst is the Covid-19 virus. The major difference between the two conditions are: Influenzas focus on the respiratory system, which is still worrisome in my case. In learning about this new virus, what makes this so more deadly is it’s highly contagious (you can pass the virus to someone without knowing it before your symptoms show) and it impacts the  systemic system. The impact of Covid-19 is it just not impacting the respiratory system. We are learning it impacts the blood circulation system causing skin disorders, blood clots causing obstruction in limbs leading to amputation. It impacts major organs like heart, kidney, lungs and liver. It has killed over 1 million globally since January 2020 - about 10 months!

My reason of concern for me, with my current situation and knowing my medical history, is my outcome if I contract this virus is probably a fatal outcome. First of course my lungs/respiratory. Over these many months and through autopsies the Covid-19 virus can severely damage your lungs to a point the only way to stay alive is to have a double lung transplant! So with the issues I already have, logically “quality of life” would come into play. Being immobile and having a history of recurrent blood clots in my limbs and having had blood clots in my lungs, I would assume I would be more susceptible in having clots. These clots can cause peripheral artery occlusion which could lead to amputation or the blood clots turn into an embolism or thrombosis leading to respiratory failure, heart attack or stroke. Throwing into the mix, I am on blood thinners, who knows what complications that would bring. The new complication link Covid-19 virus is on the neurological system. There has been cases globally where a person contracted GBS due to this virus, suffering from paralysis. Thankfully, the paralysis is short, resolving with days or a couple of months. Even so they will still suffer the residual effects of fatigue, numbness, needing OT/PT for rehabilitation to normal activities. My fear of getting this virus, what would a GBS relapse look like? Would my outcome be fatal?

I know what I written is blunt, but wanted you to realize the impact of having influenza and Covid-19 virus in my life. Ensuring I keep myself safe knowing my surroundings and who I interact with;  I might have to seem “anti-social” until Spring 2021 to keep me safe and healthy. Thank you for your patience, allowing me to vent or share an opinion, as I navigate myself through this so it doesn’t overwhelm my life but to just be a part of life, just like GBS.