Conditions I face while recovering from GBS

My GBS journey can be split into two ways - my stay in hospital (700 days which included 365 days in the ICU) and my continuing stay in a long term care (LTC) facility (AgeCare-Skypointe, 2 years and counting). Obviously, each way has had a significant on my wellbeing overall (physically, mentally, and emotional). It is a constant roller coaster ride balancing too keep my positive outlook. 

Today I am looking at the latter, staying in LTC facility these past 2+ years. When I arrived on August 5, 2018, it was nearing lunch time. So when arrived on my wing, there sitting in the wheelchairs were numerous residents watching tv. My heart sank - this is what I will be facing for the foreseeable future. Definitely didn’t expect to be entering a LTC at the age of 47, let alone as a quadriplegic too. In beginning, my interactions with people consisted of residents at the dining room when I went; my mom until she knew I had settled in before moving back to Thunder Bay; friends would visit me in my room - then the rest of my day would be me and my iPad and Google mini to keep me entertained. I did try the recreational activities the facility provided but it didn’t feel comfortable as their activities are focused for senior citizens to entertain. Definitely a generation gap on this issue. So, have come to enjoy my own company watching my favourite tv shows, The National, movies and tv series on Netflix, Prime, CBC Gem and Crave. Of course computer games on my iPad - have to strengthen my head and neck muscles so they weaken (atrophy). 

Over the last few months of 2018, new health issues had to be addressed (they still continue today in 2020). 

1. Generalized edema in both lower legs/feet and both hands/fingers and forearms: First we putting me on Lasix (water diuretic pill) to help with reducing the fluid in my body. I suffered from fluid overflow throughout my hospital stay due to the trauma my body was going through as well as being immobile too. In the summer months, the hotter months contributes to my swelling too. Not having any control regulating my body temperature probably doesn’t help matters either. I saw a nephrologist in September 2018 to make sure my kidneys were functioning well (which they are). I finally was able to get compression stockings for my lower arms and legs to help with edema. I am on the wait list to attend the Lymphedema Clinic who specializes in assessing and providing treatment for patients that have lymphedema. There is a 12-18 months wait lists to even get your first appointment! I have been on the list since May 2019, and which was delayed with Covid-19 restrictions. Still waiting..

2. When we noticed the swelling in my lower arms and legs in September 2018, we ran through our check list - elevation of my limbs, reducing my sodium intake and beginning to a diuretic to flush the excess water out. We also did an Ultrasound Doppler of my legs and sure enough my deep venous thrombosis (DVT) had returned. Being immobile, having recurrent DVTs is a reality. As a precaution I will be on blood thinners as long as I remain immobile. 

3. Dysfunctional Uterine Bleeding (DUB): Being an obese your hormones were usually not consistent. Then beginning getting hot flashes while in ICU and the impact of having GBS, my hormones probably didn’t know what to do either. November 2018 is when my annoying vaginal bleeding started again - Urgh! It was nice not having to worry about it for the 2 years in hospital. Over the course of 2 years, I have had bleeding to the point I had to go to the emergency twice due to excessive bleeding (September and December 2019) and random spotting in between. Ended up having a D&C and sampling taken in January 2020. Unfortunately, the spotting and bleeding has continued. October 19, 2020 I will have another appointment with my gynaecologist to discuss options as being 50 now, will be facing menopause - grand life being a woman (lol)

4. Urinary and Catheter issues: Being a quadriplegic plus having a neurogenic bladder due to the nerve damage caused by the GBS disease, I am not able to go to bathroom. Therefore, I require an indwelling Foley catheter to be able to urinate. Unfortunately, it took time to figure out the right catheter size while in ICU - going from 12-14-16-18-20-and back to 18. It is such a weird feeling bypassing around your catheter, especially when you can’t move or talk. The common complications you face with long time use of a Foley catheter is recurring UTIs and hematuria. One of the side effects of recurrent UTIs, is excess debris, which leads to numerous catheter changes due to blockage within the catheter tube. Normally these catheters are changed every 4 weeks; for me, it’s more like 1.5 to weeks. With GBS, I am extremely sensitive feeling the movements of my catheter. Many changes of the catheter I will be in tears due to pain especially with insertions. While doing investigations in Spring 2019, the CT scan showed I had not only ureter stones but also a kidney stone. Only symptom I had was the hematuria, no pain. With my immobility, we elected to do a electro shockwave lithotripsy (ESWL) to evaporate my kidney stone in September 2019. Flash forward to now (October 2020), similar symptoms are back. Had went for a CT scan last night to see if my stones have returned, unfortunately for safety reasons it had to be cancelled. Will now have a MRI in November. Until then, we just carry on as my daily life is not impacted. It’s simply annoying is all.

5. Pressure sore wounds: Due to my immobility, many people who face paralysis, also risk the development of pressure sores on their body. Primarily they are found on and around the buttocks, elbows and heels because you lie on the bed for long periods of time. I count myself lucky - 2 years in the hospital and I was discharged with 2 pressure sores on each side of my buttocks. We have found that if I wear diapers, the elastic portion sits right on my wounds so with the irritation it causes the skin of the wounds open up. While in the hospital we found these white soaking pads work well and doesn’t irritate my wounds. So thankful. 

6. Skin moles: In June 2020, one of my HCAs noticed a rather good size mole on my upper left back by shoulder. We took a picture of it and when we checked a month later, it had changed shape. A referral was sent off to the dermatologist. August 2020 I met with the dermatologist. Of course there is an interesting story behind this appointment. When I arrived, it was clear there was no way I would be getting through that front door of the building. So I called up to the office to explain my situation. The receptionist said if I could wait as the doctor has three more patients and she will come. She did exactly that - the dermatologist with her assistant came outside on 17ave SW to have my appointment. After her assessment, she agreed that it was the correct move to come see her but she wanted to take some punch biopsies of the mole first. As 17ave SW is a busy street in Calgary, went down one of the side streets (31 St SW). There she gave me a local freezing and took 2 punch biopsies of my squishy mole and there seems to have been another mole she didn’t like so she lanced that off too. As it will turn out good thing as the result of that mole was an atypical mole (https://www.skincancer.org/risk-factors/atypical-moles). As my dad as had atypical moles removed and my brother had a benign mole removal, so with my own personal history with an atypical mole and there is a family history too, I will be at a higher risk of developing atypical moles or melanoma in the future. Like I need another thing to worry about. 

So as you can see, my diagnosis of GBS has given me other health issues to deal with that are related to GBS. It seems never ending at times. It’s just one more thing...