Heather's Journey to Take Back Her Life

Hi, my name is Melanie Johnston and I am fundraising for my Mom. For anyone that knows Heather, they know she would literally do anything for you, even a random stranger. She never asks for help and after the hell she has and is going through, she agreed to letting me do this for her so we can hopefully have our Mom back. Her journey so far has been horrible to watch unfold, seeing a very active, very involved Mom and Grandma being confined at home or in the hospital living off a pump. We don't want to see her miss out on anymore of her children or grandchildren's lives, so we hope this can get us there. Thank you for reading Heather's Story!

**Keep in mind funds raised will have to be converted to USD to pay for expenses in the States**

My journey started Thanksgiving weekend 2022, when I placed a 911 call for an ambulance as I had back pain and couldn’t move my left leg. The Rapid City Emergency Services and Rivers EMS responded and delivered me to the Brandon ER. I spent 3 weeks in the Assiniboine Centre trying to get pain under control while the Neurologist and Ortho surgeon tried to determine what to do, ultimately, they injected a “freezing agent” into the disc area at L5/S1 in my low back. This improved my condition until January 2023 where I was in the hospital ER for pain control every other week.

Fast forward to March 2023, I was sent for a nerve conduction study on my back in Winnipeg. We made it there to find out the equipment was not working and was told to go to HSC ER – 23 hours of waiting, I was sent for a CT scan. The results showed compression at L5/S1 significant enough to be on the list for disc replacement but non emergent at that time and I was sent home.

I went off work on disability in April 2023 as I could no longer walk or sit and was on very strong medications. In May 2023, I ended up losing control of my bladder due to nerve compression and was bumped up to emergent status for surgery. June 10, 2023, my first surgery was done via my abdomen for disc replacement. Device was said to be in good condition, everyone was happy with results, and I was sent home 3 days later. Approximately a week later I felt something was not right but assumed it was just part of healing. At the 6-week checkup, the x ray showed that the bottom plate of the device had not adhered to the vertebrae causing the disc to put pressure on the plate, cracking it and fracturing the L5 vertebrae (this now made me a case study for the device).

August 24,2023, I had my second surgery to remove the device and do a fusion on my spine through the abdomen approach (this is now my second spinal fusion in my life). During the surgery my bladder was compromised in 2 spots, thus having a catheter for 4 weeks allowing it to heal. Every week I was in the ER at least once if not more to deal with blood clots and blockages in the catheter. Finally, end of September I was healed and finished with the catheter. October 2023, I was back in the hospital for 3 weeks with a bowel blockage. Once that was working again, I thought I was okay, but I was wrong. I was back in the hospital many times including the week of Christmas 2023 for bowel issues and pain management.

End of December 2023, a laparoscopic surgery was performed to explore and remove bowel scar adhesions, but food was still not moving through properly. On March 8, 2024, I had a gastric emptying study done to see how food was moving through me – diagnosis – severe gastroparesis (after 4 hours I had 86% food retained vs a normal person has >10% remaining). Only 4% of the population suffer from this diagnosis. On April 18, 2024, a peg -J tube was inserted so I could get nutrition. To get my “meals on wheels”, I am hooked up to my feeding pump for 15 hours through the evening and overnight. Now the wait began for the gastroenterologist in Winnipeg to come up with a plan.

The proposed plan was a surgery to snip the muscles of the pyloric valve at the base of the stomach to allow food to pass directly through. The surgery was performed late July 2024. I was released only to return to the Brandon ER 3 days later with pain… the clips used to hold the site closed had come off and needed to be replaced as I was bleeding internally. Another 6 weeks of waiting while I healed.

By the end of August 2024, I knew there was no change in my situation, in fact things had gotten worse. I met with the specialist in Winnipeg, and he suggested going out of country for consult and procedures. In the meantime, September 18, 2024, a balloon was tied to stretch the pyloric valve and had botox injections. No change. Due to this, I have developed dehydration issues and required a PIC line in my left arm where I now put 1L of saline in 2x daily. My total hours “plugged in” is now 18 out of 24 hours. I am unable to do much of anything and totally rely on my husband and family to take care of everything.

I await my next step; my family Dr. is referring me through Manitoba Health to the Mayo Clinic where they have a specialist in gastroparesis. I will be responsible for travel, accommodation and expenses that Manitoba Health won’t cover (only cover what the costs would be in Manitoba for treatment).

Thank you for reading my story!