Here is the couple’s story:
It has been a long and arduous road for a local family of seven and after coming up with no answers for nearly two years, there appears to be some light at the end of the tunnel. After having three children, Lindsey Bushman of Watrous became pregnant with twins and it was during her pregnancy that she began feeling congested in her sinuses. Not thinking too much of it, her symptoms continued to worsen throughout her pregnancy and after giving birth to twin boys Feb. 13, 2017, the congestion started to turn into an unhealthy state.
“At first I thought I just had a cold,” said the 29-year-old. “When it continued to worsen, I just thought it was because I was run down from having our twins and getting back into the swing of things at home.”
Two months after that though Lindsey found herself in a doctor’s office searching for some type of relief and a few answers. Nothing was improving and after visiting her doctor, she was referred to a specialist. After getting the okay to see an ENT (ears/nose/throat) specialist, the long waiting game of finding a diagnosis got underway.
“We waited a few months and never heard back. We called and were told they had received the referral but the specialist was gone on leave and there was no definite time frame when patients would be accepted.”
Not risking waiting around any longer, Lindsey was referred to a different ENT specialist. While waiting to see the specialist, Bushman’s sinuses and tissues in her nose were being attacked and were slowly deteriorating. She also often found herself sick with infection and her sense of taste and smell disappeared altogether.
“I had no energy and I could barely get out of bed in the morning. Even the day to day tasks I struggled with. I didn’t know if I’d wake up sick one day or healthy the next.”
Then in October of 2017, the Watrous resident was able to see a specialist and a CT scan along with a scope on her nose were performed two months later. “At that point we knew there was something not right and my ENT specialist decided we needed to do nasal septum reconstruction.”
A process to repair the wall of bone and flexible tissue between the two nasal passages, Lindsey had surgery just after celebrating her 29th birthday. Then six weeks later at her post operation follow up, she learned that whatever was invading her nasal cavity was spreading.
“I could fit a Q-tip between my septum at that point. Now, I have no septum left. I can touch the tips of two of my fingers together in my nose. Whatever is attacking me has just eaten away all of it.”
Bushman was sent for a biopsy May 1 and doctors began searching for a diagnosis and treatment to prevent further progression. Wegener’s Granulomatosis, an autoimmune disorder was one theory. The rare disorder where the exact cause is unknown attacks and destroys healthy body tissue by mistake. Small-sized blood vessels in the nose, sinuses, ears, lungs and kidneys become inflamed and damaged and other areas may also be affected in some cases. It can also produce a type of inflammatory tissue known as a granuloma that’s found around the blood vessels.
To see if in fact the diagnoses was Wegener’s, a doctor took a small sample of affected tissue but the results came back negative. “We were told that with nasal biopsies, it is extremely hard to confirm Wegener’s Granulomatosis. But something was going on because things had been progressing faster and faster and my nasal area was deteriorating at a rapid rate.”
Then a week after her biopsy, another hurdle arrived; Lindsey became really sick. “I couldn’t get out of bed and there was incredible pain. Thankfully my ENT specialist was able to put me on some medication, which ended up helping.”
With relief and finally having some energy back, Bushman figured things were looking up. However, a second CT scan, this time done May 26, showed more progression. Thinking the situation involved an autoimmune disease as opposed to just a sinus issue, Lindsey was referred to a Rheumatologist, a specialist who deals with immune-mediated disorders. The earliest appointment was scheduled for Sept. 18, 2018 but Bushman could not wait that long. The continual progression of deterioration was not willing to push pause and wait for the September meeting so Lindsey was able to find another specialist, getting an appointment in June.
After meeting with the specialist but not confirming Lindsey had Wegener’s Granulomatosis, it was decided to perform another biopsy and begin treatment. Like the previous biopsy, it came back negative once again. “It was suggested perhaps I had IMDD or Idiopathic Midline Destructive Disease, which does not respond to the same treatment as Wegener’s and requires localized radiation. A form of lymphoma, IMDD is also extremely hard to diagnose and essentially is done by elimination of other diagnoses.”
Looking into whether or not she had IMDD, in the meantime, Bushman was prescribed for medication for Wegener’s Granulomatosis and also saw a naturopath and osteopath for their opinions. With time becoming a serious factor, she waited for something to work. “Instead of getting better, I became really sick at the end of July and had a fever of 105˚F. I contracted pneumonia and because of the severity of the situation was sent to Royal University Hospital and went for another CT scan. The CT scan showed even more progression, I had bone loss and it was moving into my sinuses. At that point I was discharged with antibiotics and headed for another biopsy, which was a few weeks ago.”
At her biopsy, going over the latest results, doctors elected to rule out Wegener’s Granulomatosis and IMDD. Lindsey was taken off her medication and her specialists began seeking further opinions from across the country. It was also at that point that Lindsey and her husband Derek decided to pursue the idea of visiting a Mayo Clinic in the United States.
With more than one million people going to Mayo Clinic each year for care and 88 percent of patients visiting Mayo Clinic for a second opinion receiving a new or refined diagnosis, the Bushmans felt it was something they needed to try.
“We had no diagnosis and the progression of what I have has not only destroyed my septum but it had started working its way into my sinuses. I now have a cavity in my left cheek and with it eating away right under my eyes and near my brain, we felt we did not want to risk losing anymore time.”
Collecting all of her medical records, CT scans, appointment forms, and getting a passport done, Lindsey was also able to see optometrist Warren Toews to ensure her eyes were still okay. After accumulating as much information as she could, an email was compiled and sent to Mayo Clinic in Minnesota to see if she could get in. Making the decision to head south of the border, Lindsey also received the support of her specialists after they had discussions with doctors in Calgary, Hamilton and Toronto and came up with no new information or diagnoses.
“We know everything takes time but we didn’t have that luxury anymore and Mayo Clinic got back to us right away. We were approved and had a schedule within a week.”
While the news of being approved and able to attend a Mayo Clinic was a long awaited relief, her appointed was slated for Sept. 26, over a month away. “We were excited to get in but devastated to learn that it would not be until later in September.”
Getting sick again, this time right after she found out about the appointment date and with time such a factor, Derek and Lindsey thought maybe one of the other Mayo Clinics in Arizona or Florida would be able to get them in earlier. With the fear of having to wait another six more weeks, the couple composed an email and sent it off at 10:30 p.m. Aug. 12. Not expecting anything to change, the pair received an email by 8:04 the next morning stating the Mayo Clinic was able to set up a new appointment for Aug. 24 in Minnesota.
“There is no explanation other than God had answered our prayers. There have been so many people praying and asking for something to happen and it was granted. We were just so thankful and we know there is still a long road ahead but to get us in that much sooner, it was just a real blessing.”
Scheduled to be at the Mayo Clinic in Rochester, Minn., later this week, over a month earlier than originally planned, Derek and Lindsey said there will be between five to eight business days of testing for outpatients. Then after that, it all depends on the diagnosis. Once a diagnosis is made, more treatments would take place and there would be lots of follow ups and reconstructive surgery.
Whether or not that would all be done in the United States or some of it in Canada, the pair said there remains a long road ahead. “It scares me how things progressed and escalated so quickly in my nasal and sinus area,” said Lindsey, who grew up on a farm between Watrous and Drake. “But we have been leaning on our faith to help get us through.”
While the pair are relieved to be able to head to Minnesota and hopefully receive some answers, there are a lot of expenses that will be adding up during their time there. Lodging, transportation, food and the cost of health care in the United States are a few of those while future treatments, being off work and raising five kids will also put a strain on finances. To help alleviate some of the added financial stress, a gofundme page has been established for the pair and their kids. In addition to that, family and friends have been lending a hand and people from the church the Bushmans attend have also rallied around the family by providing meals, offering childcare, and yard maintenance.
“Many people have been finding out about what we have been going through and are coming to us asking, ‘What can we do to help?’ We are just so overwhelmed and humbled by that outpouring of support from family, friends, our church family, co-workers, the Watrous School of Dance family, neighbours, our specialists, the doctors and nursing staff here in Watrous and people we don’t know. We’ve had so many generous people stop by offering to help and even helping us with our flights, it is truly amazing.”
After being told by her ENT specialist that she is a one in a million case, Lindsey said, “People wonder how I have remained calm while juggling kids and work on top of this. I tell them that God has given us an unexplainable peace. We have found that peace through Him and have been reminded by that from these verses in the Bible: Philippians 4:6-7: Don’t worry about anything; instead pray about everything. Tell God what you need and thank Him for all He has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”
The couple said while it has been really hard not knowing what is going on, they are looking forward to getting some answers and are hopeful that it will all work out.