Well, we’ve been back for a few days now from our second trip up to Mayo. This trip really sapped my energy, so sorry this didn’t get put together as quickly as last time! For those who enjoyed the post from the previous trip, hopefully this is worth the wait.
Day one went much better than last time. There were no detours on the drive to Rochester, I was able to eat food with flavor when I wanted (no fasting required), and we opted for a handicapped suite at the hotel. No more stuck-in-the-hall or stuck-in-the-bathroom moments for me this time around! Also, our daughter J went with us, which was definitely a blessing. Besides her help with carrying all my junk I need for sleeping and getting around between the car and hotel, she and I had lots of fun keeping things silly… kind of like the X-ray picture I chose for this post above. :) More on the silliness later.
Before jumping to day two, we did have one minor adventure at the hotel. T and J headed down to try out the hot tub while I stayed in the room to veg a bit in front of the TV. I didn’t make it through one round of channel-flipping before they were back. They were laughing and cringing as they informed me the maximum capacity of the tub was two, there was a sign with rules that you must not use it alone (therefore also a minimum capacity of two), and that there were some unidentifiable substances floating around in it. They then went on to figure out who got to sanitize in the shower first.
Day two was initially expected to be the only day at the clinic, and that afternoon we would head home. Our itinerary looked about like this:
- 8am – Rheumatology
- 10am – Orthopedics
- 12pm – Echocardiogram
- 2pm – follow-up with General Internal Medicine
- 3pm – random immunization (stupid tetanus shot)
Like last time, “the plan” completely changed with the first appointment. After some fun examination and discussion with the young rheumatology resident, who originally went to school to be an avionics engineer like T and me, the main doc came in and proceeded to give us a diagnosis. He cut to the chase right away with: “I’m confident you have ankylosing spondylitis.” (Stay here though… you can check out the Wikipedia link later. ;) T likes to think of it as “ankylosaurus spondiferous” or better yet “that dino disease.” Does anyone else remember ankylosaurus from school? That dude was awesome… he could take on a T-rex!
The doctor’s language when informing us implied this was an easy diagnosis to make and it needs to start being treated with meds… but only after doing a bunch more testing, which he immediately scheduled. Suddenly we were looking at another day half-full of testing and a follow-up appointment a week later. But forget the talk about meds and appointments. T and I were just sitting there stunned. Why? The short story is we’ve questioned this disease various times over the years, and it has been ruled out due to nothing showing up in my spine or hips, which is primarily what it affects. My issues are in all the other joints… so if correct, this seemed to progress completely backwards. We bring this up with the doc, and he spends a fair amount of time explaining his reasoning, pointing to my latest X-rays which show for the first time that my spine has the same stuff going on. My sacral joint is even completely fused. There’s supposed to be a bunch of back pain associated with this as well and there hasn’t been until just this past year. You might say the timing of this is… “interesting.” More on that later… we have several appointments and tests to deal with.
Oh wait, before moving on… right before we left rheumatology, he nonchalantly dropped a bit of a hand grenade on us with, “there’s also this one lab test that shows you might have Wegener’s disease … we may need to keep an eye on that.” After researching the link I left there for you, I can’t stop repeating the doc’s conversation in my head as “by the way, you might also have a cool Nazi disease.” You’ll have to read the Wikipedia summary later to see what I mean. :)
While still stunned, we headed over to our appointment with an orthopedic surgeon… the key guy I wanted to see from the start. The main intent of the original Mayo trip was hoping to get some options for replacing my right knee in order to get walking in some form again. I considered getting a more definitive diagnosis only as a possible fringe benefit. Honestly, it was kind of hard to concentrate on the idea of the surgical options when we were still stunned from the “simple diagnosis” surprise of the previous appointment after baffling doctors for more than a couple decades.
The short story of the ortho appointment is: “there are options.” They aren’t great options by any means. Basically, they could replace my right knee with a special “hinged” implant which fully encompasses the leg bones and should prevent the re-fusing that happened with the left knee’s implant. This would allow me to straighten my right knee again, but might not give me much bending motion… all bets were pretty much off in that direction, and would be based partially on major effort in therapy. To make walking actually work, they would have to rip out the left knee’s implant and replace it with a hinged implant as well. This would then hopefully get both knees working the same way. Again, lots of effort in therapy and no guarantees. After much discussion, we all agreed the best move was to forgo surgery for now and continue working with rheumatology.
But first, it’s time for my echocardiogram. Why an echocardiogram? I had told the internal medicine folks during the previous trip that I’ve been experiencing chest pains, though I felt they were perhaps muscular or in my rib cage, probably due to the disease. They wanted to cover all the bases, so lucky me. :) This test was far better than being stuffed into tubes or attempting contortionist positions when unable to move most of my joints. I simply had to lay down while the nurse kept pressing hard on my chest with a metal stick. Of course, remembering that I suspected all the pain near my heart was in the muscles and ribs instead, this test was… painful. We learned later in the day I was right. My heart is fine, thankfully. :)
This would be a good time to side-track just a bit and explain some of the fun J and I had throughout the day. The first would be the “Special Needs” bathroom signs we kept passing in the hallways. Like a good father, when she asked what those were for, I told her: “You. You have special needs, my child.” I nearly got pushed into the wall for that one. :) I couldn’t stop repeating the joke every time we passed them as she drove my wheelchair all over the clinic buildings. Of course, she enjoyed making fun of me when I asked her to push me to one of said bathrooms. (I apologize if you don’t think I should make fun of myself. You should be used to it by now, though.)
The second bit of fun we had was ribbing T about her new mega-sized purse. That thing acted like a black hole. Every time I would set a medical record down, or J would put down her tablet or a book, they would be gone when we looked seconds later. We would hunt around and find out they magically ended up in T’s purse. It happened to J a couple times when T and I went to an appointment. Poor girl wouldn’t have what she intended to pass the time with and had to wait until we returned. Or, J and I would be running and wheeling down hallways to our next stop, forget the floor and desk we had to get to, and we’d have to block all hallway traffic while waiting for her to locate and extract the schedule yet again. That thing is a monster.
But what was really fun for J and I was all the driving around. Honestly, it was pretty scary for me. I kept thinking about those signs you see at roller coasters… “keep your appendages inside the vehicle at all times.” There were some seriously long “hills” in the underground passage system between the hotel and clinic that she would speed-race me through, making me think back to Christmas Vacation. Anyone else remember the scene where Clark Griswold, against any sane person’s judgment, applies astronaut-grade lubricant to his metal sled?
Back to the appointments, we next met with general internal medicine, where they followed up from our original visit with a “goodbye” to us as we seemed to be on the right track with the other doctors. A funny little tidbit about that original meeting with them is they shook their head when I mentioned my general physician back home usually just wrote down ankylosing spondylitis on my medical receipts since we figured it was “close enough.” The internal medicine folks had discounted the idea as well with, “no, can’t be that… you don’t have anything in your spine.” We got a bookmark and a thank you card for “letting us serve you” (with another bill, I thought ;). At least we also got my tetanus shot covered while waiting at that appointment. That stupid shoulder still hurts.
Now is when we scrambled all over the clinic trying to get every test scheduled for day three done on day two. We were told this might be possible, and that earlier results would mean we also might be able to make the rheumatology follow-up our day three adventure. (By the way, please don’t ask T why her husband insisted before the trip that it would be more efficient to book a hotel on-the-fly if we had to stay another day, rather than book it ahead of time and cancel if it wasn’t needed. Seriously, don’t bring that up again. It’s really difficult for me to get into body armor.)
First stop was for blood and urine tests. As soon as the rheumatologist ordered these in the morning, I understood I needed to fast the entire time before taking them. We were sitting around 3pm at this point, and boy was I getting hungry. The blood draws were a great time. The first vein seemed to work perfectly… until after a minute or so it simply stopped providing blood. The nurse and I just kind of sat there staring at it for a bit… me wondering if it should do that; her shrugging and pulling out the needle. Another nurse started filling vials and we were all laughing about how there’s no way she could spread it out enough to hit the minimum marks. So, back for another poke and we topped the vials off.
Once that was finished, I raced through part of a sandwich and some much-needed caffeine as J raced my modern chariot over to get a chest X-ray. I believe this was to establish a baseline for how my chest is working due to the state of my spine in order to monitor in the future. This required a bit of contortion to attempt to stand up flat against the X-ray machine, which simply wasn’t happening. We called it good enough after a few minutes and moved on.
Next stop was a bone mineral density scan. The purpose of the test was for a baseline of how much osteoporosis has already set in vs. how much continues to over time. Again, more contortion as I got to experience a bit of what a piece of paper feels like in a scanner. Keeping my body low enough for a device to slowly scan over my hips and spine was a bit of a feat… recall how my knees are fused at crazy angles.
The last test of day two was an electrocardiogram to check out the electrical activity of my heart, as this disease will likely affect it… so again, more establishing a baseline to monitor in the future. This was a simple, quick test until the nurse started having fun ripping out my chest hair from the bajillion patches that she applied when I showed up. As much of life continually reminds me of movie scenes, this reminded me of a clip I once saw on Youtube from a Steve Carell movie.
We ended the day with enough time to grab a relaxing sit-down dinner near the clinic, race the wheelchair all over the underground subway system to find the new hotel, and veg out in front of the TV.
The morning of day three was pretty straightforward. We grabbed breakfast and went back to rheumatology in hopes of them squeezing in our follow-up appointment before heading home, rather than having to come back a week later. After a couple hours waiting, there really wasn’t much news other than finding out they were still waiting for some of day two’s test results. So, I took a trip over to the closest bathroom and did something stupid. Their handicap stall turned out to simply be what I can only describe as a “normal” stall turned into a phone booth with a metallic bar contraption bolted to the stool. With my immovable elbow joints, I should have known not to try it out. After bashing my rib cage in on the fall down (pain which is still making me quite miserable), I was pretty much ready to leave for the day. Of course, when we were all done laughing about my mishap upon my return to the waiting area, the girls reminded me I should have used the Special Needs bathrooms. Ah… how life tends to get me back for my joking. :)
Around 11am, the lady at the desk (who was a rock star for all the help she gave us) informed us one of the tests wouldn’t be done until at least 3pm and likely the next day, so we were probably going to have to add a day four. As it turns out, it was a Tuberculosis test which was only being done to cover a situation where the treatment for my disease could actually reactivate latent TB if I had it. After some discussion, she went back to the doctor and they agreed there was no need to keep waiting for that test in the first place.
We got back to see the rheumatologist, and he went through all the drugs I was about to start taking for the rest of my life. One is a drug also used for chemotherapy, so you can guess at the possible side effects. The other major player is a “biologic” which will require either periodic visits to town for IVs or self-injections at home kind of like insulin shots. Maybe J would love to help me out there. :) Then there are others I will take to attempt to deal with the side effects of these two drugs, and there will be many periodic visits to continually monitor how my body is reacting to the treatment. Things are definitely going to change in my daily/weekly schedule, but he’s confident these will slow down progression of all the joint fusion.
As it turns out, these are mostly the same drugs I refused to try out when I met with rheumatologists here in town years ago. When nobody was confident what disease I really had, it never felt right to make such a life change in my early 30s… it just seemed like random experimenting as we wouldn’t even know if they were working for a year or more. They also didn’t know as much about the drugs back then, and it sounded at the time like I would be well on my way to a liver transplant if started so early in life. Discussing some of this with the doctor, he clearly felt bad for our situation, thinking maybe this could have gone much better for us if things had been caught and/or treated back then.
This is where my lovely wife stepped in and conveyed to him how we’ve come to see this journey. While it sure would be nice if I had maintained some better mobility, he should not feel bad for us. We would never change any of this. We have come to know Jesus Christ so much more and have ended up with a faith we never would have otherwise. God used this disease for so much good. It took years to see and appreciate His perfect timing, but we can definitely look back and see it. Even this trip was timed such that the doctor had the clues for a diagnosis due to the disease finally showing up in the “normal” places in my body. My favorite verse, which I have used in my instant messenger note at work for years, pretty much sums up how I see this “adventure” we’ve been on. Walking is temporal. Faith is eternal.
8 Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ
Philippians 3:8 (ESV)
So, the next step is to take his notes (when he’s done putting them together) and get with rheumatology here at home. Hopefully the Mayo trips are done, and we can move on with the next step in this process. Before doing that, however, I would like to share one last moment from the trip. As you can imagine, we were ready to race out of there and start the long ride home. Well, right at the bottom of the elevators in the Gonda building is a huge lobby with a grand piano that people will periodically play music on. Right when we got down there, we saw a ton of people gathered around it and they immediately broke into “Amazing Grace.” I cannot begin to describe to you the beauty of that song, when sung by staff and patients of all sorts, also crippled by diseases, gathered in that area. It stopped us in our tracks. We were in awe. It was such a special God-given gift of worship to end our trip. While those singing were crippled, they were not broken.
You see, Paul himself asked for God to remove his own “thorn,” and this is what he got back.
7 So to keep me from becoming conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. 8 Three times I pleaded with the Lord about this, that it should leave me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
2 Corinthians 12:7–10 (ESV)
God’s amazing grace is sufficient for us, too. May we all learn that life lesson… though I hope y’all are a bit less stubborn than me. :)Share on Facebook