The thought of writing out a story about Keith's journey with Wegener's (now also called GPA) has been a bit daunting, but today, I finally convinced myself it's time to start. In 2 days, we'll be hosting a fundraising event for the Vasculitis Foundation in support of Vasculitis Awareness Month, so with my mind on the disease more than usual lately, it's been interesting to dig back into our records and take a look at so many details that have (thankfully) become a distant memory. There was little information available online when Keith was in the hospital and I was searching, so I hope that someone may stumble across this post and those to come, and that they'll be a source of information & encouragement.
NOTE - the dates and information described here are tedious, but for someone looking for answers, or a story they might relate to, details are helpful. I SO wanted to find real life stories as I searched, and that's why all the nuts and bolts are included here.
You've been warned. :)
In October 2010 (photo above), Keith and the boys went on their annual hunting trip with my dad. All was good, although I recall around this time Keith mentioning that he was feeling overburdened by his workload, which was something he hadn't ever felt before. He had always dealt well with pressure, and for some reason, things were getting to him now.
The first week of November 2010, 2 weeks after returning home from hunting, Keith woke up with a plugged right ear. He tolerated it until mid December, thinking it would go away. Nothing else seemed out of the ordinary. Finally he went to see our naturopath the middle of December. After a heavy 3 day dose of antibiotics in combination with natural decongestants, nothing had improved and he went to see our ENT. She gave him a steroid shot, and another round of antibiotics. The plugged ear remained, and the last week of December, he had a CT scan; the scan showed a sinus infection. His ENT decided to make a tiny hole in the ear drum, and ear drainage began; that was a relief. Keith wasn't miserable at all during this time; it was just a pretty mild, but annoying, change from his normal good health.
About a week into the New Year, we took a family trip to California (picture below). Keith would mention how strange this thing was... whatever was going on with his ear... but that he just couldn't really describe it. When we returned home mid-January, his ear felt plugged once again so our ENT put another small hole in his ear drum for drainage, and gave him another steroid shot. Relief again. It was during this month that Keith carried a pocket full of Kleenex and Q-tips because his ears were constantly draining (yuck).
Finally Keith had sinus surgery on January 25th, 2011. The morning of his surgery, he woke up to both ears plugged for the first time. Tubes were placed in his ears during surgery, and they repaired a deviated septum & cleaned infection in both sinuses. When he woke up from surgery, he had lost his voice completely. He quickly regained the ability to talk, but his normal voice did not ever return (his changed voice is one permanent result of the disease). He went on steroids and antibiotic pills for the next 2 weeks.
The next month and a half was pretty eventful...
January 28: After a couple days of feeling great post-surgery (we realized later it was the steroids in his system that made him feel GOOD), Keith crashed. Lots of ear pressure and drainage, and a strange pain began in his head and ears that he couldn't describe.
First week of February: Began a Z pack, prednisone, and antibiotic ear drops.
Mid-February: Keith's ENT, a good friend, referred him to another ENT in Seattle. The new ENT ordered a CT scan that showed a bilateral mastoid infection.
Middle to end of February: Continued antibiotics, but the drainage and pain in ears kept getting worse. What had started as a little fatigue over the past couple of weeks became intense, and he began having sleepless nights. We noticed any time he tapered off steroids, he began to feel worse.
February 28: After a very painful night of strange sensations on the left side of his face that also radiated down his neck, Keith woke up early in the morning with left side facial paralysis. He was given a steroid shot, an antibiotic shot, and a new CT scan was done. Results of the CT scan were not consistent with his symptoms. His current prednisone dose of 30mg was doubled to 60mg.
March 2: Left side mastoidectomy was performed (picture below was taken on the morning of that surgery). Post-surgery, the doctor explained that he had expected to find a badly infected area during surgery, and did not.
March 7: MRI results showed Keith's facial paralysis was not consistent with a Bell's Palsy.
March 9: Saw a new naturopath and began on a detox and immune boosting regimen. Dr. believed this mysterious "infection" may be the result of a root canal done several years prior.
March 10: Pain was at its worst yet; Keith could not explain where the pain was coming from, or compare it to anything he'd felt before; fatigue was worse, and it was difficult to do more than lay in bed; skin rash and bumps begin.
March 12: Left index finger became cold and numb; small purple spots began appearing under his fingernails.
To this point, despite all these things, we were trying hard to live life as normal. Keith continued to drag himself into the office each morning and work, heading to jobsites whenever he felt remotely up to it; he coached Cole's rec basketball team; took care of the ranch the best he could (it was calving season, after all); some of our friends will even recall we were in a couples' Bible study at church, and they just looked at us in shock each week as Keith worsened but continued to show up. We truly were just thinking that the simple answer was right around the corner, and he'd be healthy again any day. But many people, not just our Bible study group, were really becoming concerned, and my voicemail and e-mail were filling up with questions from those who cared, so on March 14, I sent out the first of many updates to those who loved Keith:
I just want to thank all of you for your prayers and concern for Keith and our family as we try to figure out his health problems. Today we spent from 8am-5pm seeing doctors; it got us a little farther down the road toward his healing, so we’re super thankful for that.
We saw his ear surgeon, who removed the metal tubes in his ears, replaced them with plastic ones, and ordered an MRI. He went in for the MRI and found out that the results don’t show anything new. The surgeon is back to thinking the facial nerve is being affected by the infection in an area where he did not operate a week and half ago. The surgeon will be consulting with colleagues over the next couple of days to talk about Keith’s symptoms…all the ear stuff and related pain, along with facial paralysis, weight loss, a messed up voice, and more. We have an appointment to see him again this Wednesday. Both Keith and I are very happy that we are seeing this doctor; he is confident that Keith’s health will be fully restored, and he really is going the extra mile to help us put the pieces of the puzzle together. So many people don’t get to experience health care that moves as quickly as it should, and we’re thankful that it has moved quickly for Keith.
After the ear surgeon, we saw a new dentist. This came at the recommendation of the naturopath we saw last week, who suggested Keith may have an infection at the site of a root canal he had done about 3 years ago. The naturopath felt it was likely that an infection in his mouth could be the source of his sinus problems, which then also turned into ear problems. The dentist did find not only the site of the root canal to have a massive infection, but also infections in all 4 areas where Keith’s wisdom teeth were removed many years ago. So, he now has an appointment with an oral surgeon to get those things taken care of this Thursday. Again, we are thankful that the doctors are working quickly to help him!
After the long day with doctors, we both feel like things are moving in the right direction. Thank you all again for your prayers. I would love to ask for your continued prayers for Keith’s strength and endurance, as we know the pain he’s in will not be going away real soon (or at least we don’t think it will), and wisdom for the many professionals who are working to get his health restored.
Through all of this, we both have SO many things to be thankful for. Our God is so good, that He continues to bless us beyond measure, even in the middle of difficult times!
Sincere thanks to you all!
Over the next days, Keith's health continued to go downhill...
March 15: Saw an infectious disease specialist for testing.
March 16: Started coughing up small amounts of blood
March 17: Oral surgery; the surgeon removed the tooth at the site of the root canal and was surprised to find very little infection. He also opened the sites of all 4 wisdom tooth extractions from many years before.
On March 18th, I sent out another update...
We were feeling pretty positive about how things were progressing on Monday night when I sent out the last update. I suppose that, for me, it was partially because I knew that only part of our day on Tuesday would be spent “doctoring”, and I was looking forward to the break! J Well, at our visit to the naturopath Tuesday morning, Keith pointed out that the tip of his left index finger had been losing circulation on and off since Saturday. Our appointment ended, and the minute we walked in the door at home, the phone rang and it was the naturopath, concerned about Keith’s finger. So our half day of doctor visits turned into all day again. Before we knew it, we were headed to Seattle to see an infectious disease specialist. They did more blood work and found his white blood cell count to be high. Because of those results, they put him on 2 new antibiotics, which started yesterday.
Wednesday, we met with the ear surgeon and another one of his colleagues. The blood test results don’t sound like something to be alarmed about…there are lots of variables that fit Keith’s situation which could contribute to that, like the medication he is on, and the stress that his body is under with the infection. They believe his weight loss may be an effect of his metabolism speeding up in order to fight the infection. They want to continue to watch the facial paralysis closely, as they think there are minor changes happening, and want to let it come back on its own, if possible. The voice loss is strange to them, but they’ve now scoped his throat 3 times this week and found nothing to be worried about…just redness and irritation. There are some other strange, and even gross symptoms, but I’ll spare you the details! J In all, they still feel that he’s a healthy guy with some strange things going on. We keep hearing, “You are NOT a textbook case”. You’re kidding…
So, oral surgery was yesterday and all went well. Keith had the tooth with the root canal pulled and it was infected, so they cleaned it out. He also had the 4 sites where his wisdom teeth were pulled cleaned out. That procedure makes me cringe, but he didn’t even take any pain meds today for it. He said it wasn’t bad, yikes!
As of now, we have no doctor appointments today. Then we’ll start up again seeing them on Monday. I’m praying that a few days of the new antibiotics, along with the mouth surgery done, and all the detox stuff, will make a big difference over the next couple of days. When I say that Keith has a good day, that pretty much means he can think clearly and walk from room to room in the house. When I say it’s been a rough day (or night), it means he’s been in so much pain he can’t think straight and can’t function at all. I’m thankful that today was a “good” day, even after the surgery. But for Keith, I know the rough days are starting to wear on him and he’s ready to get back to life as normal.
Thank you all again for your prayers. We are so thankful, and are seeing how God is working in this each step of the way. Keith is totally at peace with how things are going, despite the pain that is hard to tolerate at times. And I’m at peace too. God is giving us patience, and showing us that, when it comes down to it, EVERYTHING else in life can wait. I believe that soon enough, Keith will be back to good health, and we’ll be off and running again, but this time with a renewed sense of God’s presence in our lives. Yes, He has our attention now, that’s for sure!
Thank you again; I just can’t say it enough! It is humbling, and has brought many tears when we think of and talk about all the people who are praying on our behalf. We’re so very grateful.
And that update would be the last one before Keith was admitted to the hospital. He rapidly declined over the weekend, was unable to get out of bed, and began coughing up large amounts of blood on Sunday, March 20th.
As we would later learn, the diagnosis of Wegener's can often take a very long time. Keith's symptoms lined up well with the disease long before his diagnosis. My next post will begin with the start of his 6 week hospital stay as doctors tried to get the disease under control.