Sunday, February 22, 2009

February - April, 2008: What Brought Me To The Mayo Clinic

It was about a year ago today that it started. I equate the years before February 2008 as the “pre-season” MS years. For example, in the NFL pre-season, fans still get charged the full price but it’s just not the same quality and level of competition that you get in the regular season. The head pains, sweats, stomach ailments, occasional loss of balance and so on – that was just the 2nd string playing on behalf of my MS. I had been taking my horse pills, I mean Pentasa, for a few
months and hoping that we were onto a new chapter in our lives. It turns out I was right, just not how I thought.

Angela and I went to Miami shortly after New Year’s to see Virginia Tech play against Kansas in the Orange Bowl. The Hokies lost (Kansas of course, cheated, at least that is how I remember it) but we had a blast meeting up with the Allard’s (sans kiddos and emergency room visits on this trip) and reuniting with some old high school and college friends. We had never been to South Beach before and enjoyed ourselves so much that we even started thinking about a return visit later in the year. After returning back home, Angela and I got pretty sick. It was probably from the traveling and preceding weeks during Christmas, Vincent’s Birthday and the New Year that kept us fairly busy. I think our bodies were saying “enough” and that they needed a break. After a few weeks, though, I was still surprised that I didn’t feel so well. At this point, I didn’t have a fever but just a lot of sinus pressure – I assumed it was a sinus headache. I can’t even remember if it was bad enough where I was taking medicine for it, but after over a week of this dull pain – which was confined to the right side of my face, predominantly my eye – I mentioned it to Angela and she agreed that something didn’t seem right.

It wasn’t high on my to-do list to make a doctor appointment with my primary care physician for yet another headache/eye related issue. But as the pain entered its second week and gradually started to increase, the red flag started waving. Soon, other issues emerged. My vision seemed a little slower. Almost as if I had drunk one too many alcoholic beverages…the room was slowed down a little bit. I began having problems with my peripheral vision and it started to hurt to look out of the corner of my eye. This was quite the sinus headache, I thought! As with most of my preceding symptoms, I just adapted to it. In meetings at work, I would intentionally choose seats that would limit the amount of peripheral vision that was required. And when necessary, I would literally turn a full ninety degrees in my seat to the side to speak with the individual straight on. Walking the halls at work became an odyssey, hearing my name, but not sure who was saying what, often I felt like I was in a Twilight Zone movie and it would only get worse.

One morning, as I was getting ready for work, it became unbearable to shave. I couldn’t stare into the mirror as I shaved my face without causing a severe pain in my eye. This was too much. I went downstairs and started doing some research and wasn’t surprised to learn that Crohn’s disease, which is an inflammatory disease of the digestive system, also manifests itself in other places on the body – including the eye. And there went the light bulb in my head. What started off as a slight sinus headache had progressed to impacting my vision and now I had something to tie it to Crohn’s. I called my GI doctor and he agreed that it could be related to Crohn’s and referred me to see an ophthalmologist right away – eye issues are not something you take lightly. My GI doctor get me an appointment with her that morning.

Within a few minutes she ruled out the problems I was having as Crohn’s related – my eyes weren’t red and no inflammation appeared to exist. After an exam, she referred me to go for a CT Scan and let me know that I either had an issue with my sinuses or my brain. Unfortunately, this is how a lot of my doctor appointments had proceeded over the years, particularly with my head pains. Generally, I was referred for a CT Scan (looking for tumors became way too common) and I’d go and have it done, head home, wait a few days for the results and then after they returned negative, wake up the next day and move on. So even when she painted those two options, one of which was just horrible to think about – although I do believe she laid the odds as 80% sinus related – I think I had become so desensitized, it was just a normal part of living my life. She did make mention that she’d prefer I have an MRI done, but out of fear of my insurance not covering it, we should just go with the CT Scan. This would prove to be a pivotal decision.

Over time, it became a bit comical (read: dark humor) calling for the results of my tests. When somebody is having a test done to determine if they have a tumor or other highly sensitive health issues, they generally want to know the prognosis from their doctor sooner rather than later. Maybe I’ve just succumbed to the internet generation, and I’d like to be able to log-in to my medical page and see the continuous and instantaneous status of where my x-rays/tests results are, have they been reviewed – things like that. Instead, I (with a lot of help from Angela) usually have to be proactive with multiple phone calls, waiting on hold, listening to the person on the other line shuffle through some paper, “um, how do you spell your last name again…hmm, don’t see anything, let me put you on hold...”, tick…tock…tick…tock, “um, Mr. Wentnickling? We got your results and it looks like they are negative. Would you like to schedule a follow-up?” I don’t recall exactly how things worked out with ophthalmologist – I do know that it was a much more pleasant experience than usual – but the diagnosis was the same; negative on both counts.

So there I was with my eye doctor at another dead end. She prescribed me an oral steroid to ease the pain and set up a follow-up appointment in a week. The steroid eased the pain immediately but my vision problems persisted and expanded. I started getting “floaters”, as I would learn they were medically called, but not your run-of-the-mill kind – they were multiple, constant and at one point, it appeared that a curtain was falling. It sounds insane and trust me, it was – but seriously, a curtain being lowered is the most accurate way to describe it. Blurred and double vision was always part of the package but originally I just assumed that was related to the pain. I rarely have any of these issues anymore. Occasionally, I get a sharp pain in my right eye (always the right eye) – you know when somebody says “I’d rather stick an ice pick in my eye”, well that’s what it feels like. The only other symptom that persists to this day are the bright lights. It’s only in a dark room, or walking around my house at night. Out of the corner of my right eye, I get flashing lights – think of a strobe light. I remember a few months ago at a follow-up with my doctor talking about the “strobe light” and unbelievably to me, I learned this might just be something that will be with me for awhile. It’s really the least of my problems right now, and if anything, is kind of entertaining.

During my follow-up after taking the steroid for a week, I was given my prognosis – optic neuritis (ON). As it turns out, ON is the most common symptom that occurs before somebody is diagnosed with multiple sclerosis. It was nice that I was able to finally attach an official name to one of my ailments and there was no ambiguity, further tests, anything. It’s funny, I remember one moment with my ophthalmologist….and I think about it a lot. I was sitting in her office after one of my follow-ups and she was doing some paper work, facing away from me. We were talking (almost joking) about all the issues I’ve had over the year – the “mystery” patient…and Mike “WebMD” Wentink came out and asked about multiple sclerosis. It was one of the various options Angela and I had looked into. I’d researched it and thought “wow, this sounds like me” and Angela had done the same. We’d never talked about it with each other, though – both of us didn’t want to stress the other one out – so we kept it to ourselves. So I took a shot with my eye doctor and this is the moment I replay in my head…she paused from writing, probably about 5-7 seconds, kept looking down at her notes, never looked up at me and then resumed writing. It was a long awkward pause and no response to my question followed. I took it as an irritation on her part, which I’m sure doctors feel a lot; a patient arming themselves with some wikipedia entry and thinking that qualifies them to put a medical certificate on their wall. But now as I look back, I think, was it actually an “Aha” moment? Probably not…but it sticks with me. The pain was gone but my vision problems continued for at least a few more weeks, it took a long time to get back to normal. I was very nervous, a lot of what I had read about ON mentioned permanent vision loss. One night, right before I went to bed, I told Angela how fearful I was of losing my vision and I told Angela “I’d rather lose my taste than my vision”.

The next morning I woke up, went downstairs and took my horse pills (4 of the 8 daily pills I was taking for Crohn’s) and as usual had a tall glass of water to wash it all down. But, something was off. I drank the water and I wasn’t satisfied – I just couldn’t quench my thirst. What was going on? I grabbed something to eat, and had my own “Aha” moment – my taste was muted. My taste wasn’t gone but it may as well been. Everything I ate had very little flavor, it’s as if somebody had taken a needle to all of my food and drained 80% of the taste out of it. My “Aha” moment that morning wasn’t that I had MS, but that this is getting serious and way beyond Crohn’s – I had a journal I had been keeping for my stomach problems, but that day started to expand to include everything that had previously or was currently ailing me. For the next few weeks, my muted taste continued; eventually I had a few days where everything I tasted was of today, my taste has returned to normal. I certainly learned my lesson, though, as cliché as it is - be very careful what you wish for!

Looking back, the weeks and months all blend together but this was around the time that my health began to truly unravel. The numbness and tingling intensified and I started getting what I later learned was vertigo. I remember one day vividly at the grocery store. I had just stopped by to pick up a few items but I felt like half of San Antonio was there, too. All the people, all the motion, I could barely stand up. I ran my cart into a table, into other people…I eventually just left. I felt like the store was spinning and I couldn’t maintain my balance. This would come and go over the next few weeks, some moments/hours/days worse than others. Not sure if it was the vertigo, vision problems, or just a combination of ailments that also led to a constant state of nausea. I had it before, that was part of my Crohn’s write-up, but this was constant. It reminded me of Angela in her first trimester of pregnancy, with crackers near the bedside, always needing a snack or something to get in my stomach to try to make the nausea go away. This remains even until today, thankfully it isn’t as constant and even better Angela found me some relief from a neat little product called Nauzene.

I was losing other faculties, too. Dropping things. Not fumbling around, being klutzy – this was different - I would literally be standing there one second holding something and the next second it would be on the ground and I didn’t know why. At work, from time to time – as a “stress reliever” – we’ll throw around a little nerf football. Professional QBs, we are not, but over time one becomes pretty apt at shooting the ball between cubicles, avoiding ceilings, sliding it through office doors…all while causing little to no damage. This story doesn’t end with me breaking anything; I never got the chance to. It was almost as if I didn’t have control of my throwing motion, my throw would basically go straight into the ground or something very close to that. MS isn’t only physical, it is also mental. At times, words would escape me. Nothing as minor as “dog” but certainly part of my regular vocabulary; regular enough for me to notice. Frequently, I’d be asking myself - why can’t I think of this word? I’d play $100,000 Pyramid a lot with Angela – giving hints and pseudo-direction until she solved my riddle. Words, names of people, places and so on at random times for no apparent reason. I’d learn to always have a thesaurus operating parallel in my mind while I talked with family, friends or co-workers – just waiting for it to occur again.

Clearly this was impacting my quality of life and, in my opinion, was well beyond Crohn’s. For me, losing my taste, really was the tipping point. I worried that I had been reading too many internet medical sites and was playing mind games with myself, creating the neurological issues I was having. But losing my taste? That’s not in my head, it is what it is. I had an appointment with my GI doctor and brought my list of recent ailments and told him that I might have Crohn’s, and that’s fine – but my biggest worry is that we are missing something. He agreed and suggested a second opinion and based on my ailments, I needed to go to the “mountain top”, so he wrote a letter of recommendation on my behalf to The Mayo Clinic. Hearing those words from him…communicating those words to Angela, was very difficult. It is one thing to joke about being a “mystery” to the medical community, but quite another to fly up to Rochester, Minnesota to be examined. A few days later we came home to message on our answering machine from The Mayo Clinic requesting a call back to set up the dates for my visit.

Sunday, February 1, 2009

Emergency Room Visit & Extended Stay At The Hospital

All I wanted was for the pain to stop. I wasn’t looking to solve any larger puzzles that night. I wanted relief, determine the source of the ache and then head back home. We had friends in town visiting and I was a little embarrassed that their vacation was being interrupted by a late night trip to the emergency room. Murphy’s Law usually results with our house breaking down when friends or family come visit. We’ve had the fire alarms go off (and it only happens at 3 a.m., naturally), the A/C unit bust (during the summer, naturally…Briggs and I went delirious in the heat waiting for the repairman), garage door breaking…the works – but only when people come and visit. It would be way too convenient for it to happen while nobody was here! But this was something new; a trip to the emergency room on a Friday night.

I’m fuzzy on the exact details but this is what I remember. Not surprisingly, there was a lot of waiting followed by a lot of tests. Chest x-ray, CT of my abdomen and pelvis, blood work – they did it all. It was three in the morning but I felt like I was in constant movement, being carted around from room to room. As we waited in the emergency room earlier in the morning, our patience and my pain threshold were tested and we both grew weary… Angela and I found humor, because that is all we had. We’ve never seen “Grey’s Anatomy” and often we feel like the only people in America that haven’t. So maybe it was ironic humor getting the best of us or just through plain delirium but as the clock ticked in the waiting room I started to joke with Angela “Is this how it is on Grey’s?” and then as I was being wheeled through the different corridors with Angela by my side I’d remark, “I feel like I’m on Grey’s”. Most of the staff at the hospital probably thought we were loons and it probably doesn’t make a lot of sense for most of you reading - but for Angela and I, it was something we could laugh about – just the two of us, our way of finding some kind of solace through all of the medical mysteries we had encountered. We’d do a lot more of this over the next year and a half.

The emergency room doctor was very nice but also very hurried. He was pretty swamped that night and here I was, just a normal looking guy with a stomach ache. The tests didn’t return anything remarkable but there were abnormalities, particularly my small intestine – some kind of fluid build- up. This, combined with my history of gastrointestinal issues led the ER doctor to the conclusion that I might have Crohn’s Disease or Ulcerative Colitis

What? What is that? Well, for starters - and at the time this is all that mattered to me – it was something I could use to explain all of the problems I had been having. I knew something was off and hopefully with this Crohn’s/UC thing I can take some “magic pill” and return to living a normal life again. My stomach and arm pain had subsided thanks to pain relief provided by the hospital so with this news I was ready to get home, see Vincent, spend the rest of the weekend with the Allard’s and start reading about these gastrointestinal diseases. The doctor recommended admitting me into the hospital for more tests to confirm Crohn’s or Colitis but with friends in town and a busy week of work ahead, I declined and decided to schedule the necessary tests later that week. I was leaving the hospital in pain but at least now I was a lot closer to a conclusion, could head home and see Vincent, crawl into my bed and finally get the IV removed from my arm.

The next day I was pretty limited with my movements and remained in bed for most of the day. The Allard’s took our car and did some touring of San Antonio on their own and at night Angela took them out for dinner. They left the next day to head back to North Carolina and I again took it very easy. I was feeling better, the sharp pain had become a dull ache and my left arm was feeling a lot better. I considered working from home on Monday just to ease myself back into the workweek but with future doctor’s appointments sure to follow I wanted to limit my time out of the office. That seemed like a pretty good idea at the time, anyway.

Monday morning came, and I don’t think I made it 3 hours at work. Relaxing at home with a wife that goes out of her way to make sure you are comfortable just isn’t the same as a Monday morning in Corporate America. In fact, the two could be viewed as polar opposites. I made it through my first meeting – long deep breaths, this wasn’t my first time navigating through pains, whether they resided in my stomach, head or otherwise. By the end of the hour two, I had to throw in the towel. I gave my manager the condensed version of my exciting weekend trip to the emergency room, called Angela and headed home. She had already called my parents to come watch Vincent and off we went to the hospital.

Angela spoke with the hospital ahead of time and the expectation was that we would be admitted immediately and we would begin scheduling the necessary tests. Unfortunately, it didn’t work out as smoothly as that. Instead, since the hospital was near capacity, we had to navigate again through the emergency room and re-live the same horrors from the other night. By now, I had lost count of the number of times I had told my story to various medical staff…all of the weird ailments, not sure of how they add up – and the best, trying to quantifying the pain I was feeling “on a scale of 1-10”. Still not sure what that even means. I’m a husband, father, full-time professional and part-time student so I’m not going to waste the hospital’s time, my family’s time, my job’s time and my time unless this pain is really messing with me. After almost an entire day of waiting, more tests (a full body scan this time) and another IV, I was finally admitted into the hospital.

Not surprisingly, over the past week I had been living with the night sweats again. I wasn’t sick – I felt great when Mark and Melissa arrived, but the sweats were still there each night to remind me that something was off. As the hours I spent at the hospital increased, the worse I began to feel. One of the reasons I never liked going to a hospital or doctor’s office is because each time you go, your chance of getting sick increases – from being around others that aren’t feeling well. And the odds finally caught up to me and it wasn’t long before I had come down with something. So now in addition to the pain, I started to feel like I was getting the flu. Soon my body temperature would catch up with how my body felt, and this would only prolong our stay at the hospital.

One lesson learned from our stay at the hospital was – if you are going to have a mysterious medical issue arise, try to avoid having it during the summer, when a lot of doctors and other medical staff are on vacation. We’d been at the hospital for almost two days before we met the hospitalist; he’d just returned from a trip to Vegas. We had better luck with my gastrointestinal (GI) doctor. It was well after dinnertime our first night in the hospital but by sheer luck and timing, we ended up meeting with one of the “Top Docs” in San Antonio – and for the first time, Angela and I felt like somebody was actually listening to us. Truly listening, he wasn’t in a hurry to get to the next patient, wasn’t quick to order and test and run – he wanted to know my complete history and understand all of the issues I had been facing.

After talking through my ailments, he recommended an upper endoscopy which they scheduled the next day. I won’t go into the details about the procedure and I was knocked out, anyway – or at least with the sedative it felt that way – but I woke up later with Angela by my side and talking with my GI doctor. He had discovered some inflammation in my lower intestine which would potentially confirm Crohn’s. Unfortunately, Crohn’s is similar to MS, in that there are no easy tests to figure out what you have. This was just the first step.

The endoscopy was on my second day in the hospital. Up until this time, I’d been pretty lucky the first three decades of my life. I had some bumps and bruises along the way but I’d avoided broken bones and never had any overnight stays. So the first few nights were rough. I was sharing a room with another individual who, among other ailments, had a continuous cough that made the hairs on the back of my neck stand up each time I heard it. This is my blog about MS, not a Stephen King novel, so I will just leave the details at that. Angela reminds me of many other details of this horror story but I will spare anyone who happens to be reading this…feel free to ask her about it sometime, she’ll have a great time filling you in on the details! Almost as bad and maybe worse than his blood curdling cough was that he had his TV on all night. Never turned off, or if it did I was either passed out or dreaming it was still on. And it was the same channel, all day and night – showing re-run after re-run of Law & Order. Yet another popular TV show that I’ve never seen and promise you that I now never will. If I see it on TV I have to turn away and leave the room, the opening “dun dun” was a fixture in my mind for days to come.

Angela arrived the second morning and my health had by then greatly deteriorated. I was now running a high fever, had multiple bouts of sweats, loss of appetite and only felt that I was getting worse. I shared my first tip on not hitting up the hospital for an extended stay during the summer and here is my second tip, which is just as important. Try to have somebody there by your side that will be your biggest advocate. I was feeling progressively worse and was in no condition to have a rational conversation with the medical staff and the moment Angela saw me in that condition, she grabbed everyone’s ear she could find to get me a private room. They couldn’t even finish telling Angela how much extra it would cost before she agreed – just get me in a private room.

I have no idea if I picked something up from my “roommate”, or the lack of sleep contributed to my declining health but by the time I got to my private room the medical staff was very concerned with my rising fever and overall state of health. Due to the nature of the procedure, they wanted to rule out any chance that I had picked up an infection. So the next few days I was confined to my hospital bed, watching TV, reading, sleeping…a few times I found the energy to get up and walk the floor.

The nights all kind of run together now, but they were the worst. Being with my “Law & Order” friend was bad enough but even when I had my private room I still had plenty of visitors during the night to take blood and more – I even had an ultrasound! They’d knock twice and then open the door…this really wore me down. By the fourth day, Angela and I couldn’t take it anymore. We had been requesting to check out and hadn’t been successful. I never knew that I’d have to work so hard to get out of a hospital! I don’t know what I would have done without Angela; I think I’d still be on that hospital bed. Again, she was borrowing the ear of everyone she could find. We didn’t know a lot more than when I was admitted. Apparently I might have Crohn’s but my pains had mostly gone away and my fever subsided so we were anxious to just get home.

By October, the diagnosis was Crohn’s and in my mind that explained a lot of the mysteries that we had encountered over the years. I read quite a bit about it, educating myself to explain it to others. I went back to work, went back to my normal life of being a father, husband, professional and student. I would meet with my GI doctor frequently as we attempted to verify the original diagnosis. I had a variety of tests, some of which…well, let’s just say I saw the future and I’m not looking forward to entering my 50s. Unfortunately, I got to experience this annual screening test about twenty years early. I also had some unique experiences; in one procedure, a capsule endoscopy, I swallowed what is basically a miniature camera and it recorded images throughout my digestive tract that was being recorded on a CD, which was attached to me in an overall-esque outfit. Yes, I took the day off work for that one!

(Looking good, Wentink! Angela never got to personally witness me in this contraption so I had to capture the moment - why give jewelry for our next anniversary when I can just frame this picture!?)

Nothing ever came back that said, yes it is definitely Crohn’s, and it doesn’t work like that, anyway. The pain in my abdomen continued but it was bearable now and living with it just became part of my daily routine. Eventually, I started taking medicine for Crohn’s – of course, it wasn’t the “magic pill” that I was hoping for. It was a pill. But eight of them…and they were huge! I took four in the morning and four at night and I could drink a gallon of water and it wouldn’t have made it any less uncomfortable to get them down. I was desperately looking for answers and wanted to move on so if this is what it took, then bring it on. The pain wasn’t as constant so there was hope that the treatment was working. The holidays came and then we began 2008 cautiously optimistic that most of my medical mysteries had been solved so I could spend more time with my family and friends and much less time being poked and prodded.

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