My Health Story Part 3- Tests, Diagnosis, Answer to Prayers

Ok, back to the story...this one's a doozy! Tuesday, October 11th was a very eventful, long day at the hospital. Jake came and joined me early in the morning, and we waited for someone to come and get us for my endoscopy. The bummer part of the morning was that I couldn't enjoy a nice hospital breakfast. If you know me, you know I'm all about food, and being in a hospital is usually fun because you can order whatever you want and eat in bed while watching TLC to your heart's content. But alas, I still couldn't eat or drink even a sip of water...I was PARCHed. I even tried some of the "mouth moisturizer" goop from a tube that came in the toiletry pack in my room. Never do that. It's like slime in your mouth that never goes away.

Anyways, finally someone came to fetch me, and had me lay on a portable hospital bed to wheel me down to the procdure room on another floor. It's kind of fun being transported that way...it's comfy, and you feel important. Always gotta find the silver lining in situations like this. So they hooked me up to the machine, got things ready, and then we waited about a half hour for Dr. Moore to get there. Finally he made it, and told me that he'd be using a pediatric scope, which is smaller and would hopefully be able to go around the food and get the job done. Both he and Dr. Schmidt had not wanted to try to suck the food out, because there was a good chance that I could aspirate, or breath the food into my lungs, while under anesthesia. I was bummed, cuz I really just wanted a clear esophagus, but had to trust their judgment.

So once again he started the lovely Propofol and I was out cold, and when I came to, there was good news! The doc had been able to indeed suck the food out, since it was so wet and loose thanks to the weekend clear liquid diet. He praised Dr. Schmidt's judgment for putting me on that diet, and said that he was able to get all the way down and take biopsies of my esophagus. Hallelujiah! With that test down, I was taken back to my room to wait for the next one- an esophageal manometry, or motility test. Blegh, I gag right now just thinking about it. It was absolutely one of the worst times of my life. Here's why:

The plan was to take this test and verify that I really have Achalasia, because this test is the diagnostic determining factor. Then the plan was to take a barium swallowing test (which I'd done 4 years ago) and then get a feeding tube inserted. At first, that sounded like a good idea because I knew I was dehydrated and malnourished and couldn't eat, so that was the best option. It was comforting to know that I'd get nourishment somehow, and be able to gain some weight and get strong enough to either get balloon dilation or surgery to fix my esophagus. BUT, I'd thought they could feed me through an IV in my arm or whatever, but they said the tube would be inserted through my nose and down my throat. And the plan was to have it in at home for WEEKS. That thought was not comforting.

Around noon that day, a lady came and put me in a wheelchair and wheeled me to the Outpatient services building clear across the hospital. Jake guided my IV stand. We got to the little testing room, and I was told to lay on the bed while the lady got things ready. She stuck a cutip up my nose and numbed my right nostril in preparation for the tube to be inserted. Then she took this tiny long tube about the diameter of a coffee straw, gave me a cup of water with a straw, and told me to start drinking while she shoved the tube up my nose, down my throat, and down to the bottom of my esophagus. Talk about UNCOMFORTABLE. Then she decided she still had some prep work to do, and couldn't find a comfortable place to rest her arm while holding the tube, and all the while I was sitting there in slight panic mode saying "That's fine, ok, let's get this done, alright!"

The whole test takes about 10 minutes of no talking, swallowing on cue, and holding absolutely still. I had to half sit, half lay on my left side since she was sitting on my left but had the tube in my right nostril and had a hard time reaching. (wish she would've just told me she wanted the tube in the left nostril, geez) Once we started, she used a syringe to suck up a sip of water, and said "Open" and I opened my mouth, and she squirted the water in and said "Swallow". I was hooked up to a machine that measured the strength and pattern of my swallows at each level the end of the tube was at, and the recordings showed up on the computer screen. So she repeated the process 10 times at the bottom of my esophagus, which wasn't SO bad cuz I couldn't feel the end of the tube as much. It's just so hard to consciously NOT swallow when you're not supposed to, and just to swallow on cue. I was supposed to focus on breathing to take my mind off of it. Let me tell you, I was focused and wanting to get this thing done as fast as possible.

We did 5 swallows at the next level, in the middle of my esophagus, and then she warned me that the last set of 5 would be in the "gagging area" of the throat. Great. It was insane. I kept swallowing repeatedly unintentionally while she got it placed in my throat, and then she did the last 5 swallows super fast..."Open, swallow..open, swallow...open, swallow...open, swallow...open, swallow. DONE" Thank goodness, cuz that was torture. Out came the tube, and I was left there with Jake to recuperate while the test results came in. The numbing stuff from my nose had made its way into my throat by now, and I was tasting this nasty bitter stuff and had a sore throat from the tip of the tube hitting my throat repeatedly. Suddenly, laying on that bed made me clausterphobic and I started to freak out a little.

I had to get out of that stuffy little room, and went out in the hallway with Jake. All the while panicking about having a feeding tube inserted in just a short time, and having it in for WEEKS. The thought just made me feel so hopeless and scared and depressed....just having that tube down my throat for 10 minutes had been torture. How would I do it for weeks?

We waited for the "Achalasia expert" doctor, Dr. Boschart, to come in and look at the test results to verify whether I did have Achalasia. In the meantime, I focused on making small talk with Jake and a nice nurse in the hallway to take my mind off of things and try to calm down a little. Finally, an older, experienced looking doctor came down the hall and walked into the room to look at the test. As soon as he saw the results, he said "Yep, this is a classic case of Achalasia." He showed the printout and pointed out how a normal swallowing pattern looked, and then compared it to mine and how my swallows were dormant, and didn't have any movement in the esophagus. Stupid lazy esophagus.

So that was a relief, to finally hear the official diagnosis. But then there was still the matter of the feeding tube and my desperation for another option. I looked at the doctor with pleading eyes and on the verge of tears and said, "I need your help! I don't think I can handle it." To which he said, "Well, there's always Botox." Dun duh duh duuuuuuhhhh!! Music to my ears. There WAS another way! Now that we knew I did have achalasia, I could have the bottom of my esophagus injected with Botox to relax it, open it, allow food to pass, and be able to eat in order to gain strength! That option sounded 1,000 times better, and I cried, "Yes, please!"

And just like that, everyone sprung into action. It was INcredible. Dr. Boschart called in Dr. Moore, who's actually Dr. Boschart's junior partner, who called Dr. Schmidt on the phone, who all agreed that Botox was an appropriate route to go instead of the feeding tube. People started calling back to my hospital wing to tell the nurses to send away the dieticians who had shown up to teach me how to use the feeding tube, to cancel the barium swallow test which was unneccessary, and started getting a room ready right there in the Outpatient wing to do yet another endoscopy there on the spot. I was wheeled just down the hall and got set up on the hospital bed in the procedure room to get started. By now it was about 5 pm, and although doctors and nurses had been ready to leave for the day, I was amazed at how willing and ready they were to perform this impromptu endoscopy.

Once again, I woke up out of dreamland and was filled with hope and renewal and happiness that I hadn't felt in awhile. Dr. Moore said everything had gone well, he'd injected the botox, and had done some more biopsies. He said I could go home that evening and start to eat, but to take it slow, starting with liquids and moving to soft foods. Then I could just test things and see how it went, but to stay away from meats and dry breads. No problem, I can eat and drink again! From what I could tell, my chest and that painful lump felt better, and I was able to sip some apple juice with no problems. I was SO grateful for the swift action of everyone who had made that happen, and so quickly. It was a miracle for me.

I was discharged that night and finally got home to see my sweet girls. It was such a blessing to have my mom here to watch them while Jake stayed by my side, and she didn't have to fly home until 5 days later. My recovery from the hospital was gradual...I still had super swollen ankles and feet, and was pretty weak and energy-less. But it was so good to be home and be eating and drinking and feeling semi-normal again.

 The beautiful bouquet of flowers that came from KJZZ (Jake's work)

 The day after I got home, and wanted to get out, we went to Gardner Village to enjoy a leisurely stroll and the witches. Love my little Cam Cam.

The doctors at the hospital had referred me to an experienced surgeon at LDS Hospital, and told me to call hiim and talk with him, and decide if surgery was the best option for me. It's interesting, because Dr. Boschart's opinion was that balloon dilation is the route to go (he performs them, on top of that) but Dr. Moore and Dr. Schmidt both think surgery is the way to go. I had to decide which would be best for me.

Jake and I met with the surgeon the following Monday, miraculously, because originally when I called they said he couldn't see me until December 28th!! Are you kidding me?? But I told them my situation over the phone and they said I'd be put on the waiting list for an opening, and then I got a call the next day saying that he could see me the next week. Thank you! Mini miracles happening all over the place. The surgeon was very nice, very experienced, and was willing to answer lots of questions and talk with us for a long time. I said that I did want to get the surgery, otherwise known as the Heller Myotomy, and so we picked a date that would be best for me.

My surgery is scheduled for Monday, November 28th. Right after Thanksgiving, so that I can enjoy a nice meal :), and just in time for me to have a few weeks to recover before flying to PA for Christmas. He knew that we wanted to get it done this year, since I'd had a baby and we'd met our deductible, and before the botox wore off, etc. So he was very flexible and mindful of our needs, for which I'm so grateful! And I'm actually looking forward to getting surgery and hopefully treating this thing for good.

So as of now, I'm able to eat pretty much everything, although food does still sometimes get stuck. It's not painful, I can just feel that it's there, and have to just try to wash it down with liquids. (I was hoping that wouldn't happen at all, but I'll take what I can get) Since the hospital, I found out I had a urinary tract infection, which may or may not have already made a reappearance. They also found from the biopsy that I have a yeast infection in my esophagus, and when I went to the eye doctor he told me I have an inflammation of the eyes called Iritis. I also had a CTscan of chest/stomach/pelvis, and am not sure yet what the results were. So I'm taking those 2 meds 4 times a day along with other regular meds, and I feel like a druggie.

My problem is that I still have itchy legs and feet that have been bothering me since the beginning of the pregnancy, along with numbness, tingling and achiness in my hands and feet. They also like to cramp up. I also feel like there's a weight in my chest sometimes which makes it hard to breathe and hard to hold my shoulders up straight. (Please don't let me become a hunchback.) I've also lost about 20 lbs since my pre-pregnancy weight (I've been trying to nurse but don't know that I'll be able to continue if I keep losing). So these remaining symptoms plus the blurry eyes are still questionable...but I'm seeing my primary care doctor today, and a neurologist next week to try to get some more answers. It's a neverending process!

I would be very ungrateful if I sat here and complained though, because I know it could be a lot worse and that people go through bigger trials every day. I'm thankful for the answers and help I've received, for all the love and support and concern of family, friends, neighbors and ward members, and that I'm able to be home with my sweet family. I'll keep you posted on the coming weeks and how surgery goes. Until then...thanks for reading.