My medical journey led me to Dr. McBride (an asthma/allergy specialist out of the Everett Clinic - I am so blessed with insurance that allows me to chose my doctors - within reason - and I heard he's the best . . . so to him I made an appointment). I met my match in fire as he told me the first appointment, "we will either figure out what is wrong with you or you can fire me - I don't like getting fired." And we began testing. He shared with me that asthma is caused or flared by one of three things - sinus problems, reflux problems or allergy problems. We began at the beginning with sinus (my mom had a million sinus infections in her life and ended up having sinus surgery - which stopped her sinus infections - this would make sense - I think we're on to something . . .) They send me for a ridiculously uncomfortable up-the-nose scope test (which I told McBride - test it all - if you can swab it, sample it or try it - I'm game - information is power and "I can do all things through Christ who strengthens me.") The results came back that I had a slightly deviated septum (one side of my nose channels is a little crooked) and probably means I'd slightly broken my nose at some point (how did I not know this?!) but after meeting with an ear/nose/throat doctor, he reassured me it had nothing to do with my breathing and even if they surgically fixed it, it wouldn't change a thing with my breathing . . . step one, check.
Step two was reflux (which I told McBride was crazy because I never felt annnnny heart burn). He again educated me (you can imagine how long our appointments lasted with my questions . . . I should give him a raise?!) that some ridiculously high statistic of people have severe reflux without symptoms and that maybe the severe asthma was my symptom. Okay - I can give anything a try - plus on my quest for knowledge, I want to have every test I can so bring on another one . . . I was scheduled for a endoscopy and given clear and restrictive guidelines until the test date, which was a couple weeks away. I couldn't not drink alcohol or coffee after 12 o'clock (okay on the coffee but gonna look weird with a glass of wine at 10am?!), I could not eat or drink a speck of food after 5pm (and not lay down for 1 1/2 hours after my last sip or bite), I had to raise up the head of my bed by a few inches (Travis solved this problem with a few trusty phone phone books) and take two acid reducing prescription medications not the recommend once a day but twice a day . . . everyday. So I did . . . to a T . . . and it worked . . . my asthma improved and I avoided a flareup for the three weeks . . . weird.
We went to Everett one lovely morning for my endoscopy - couldn't eat or drink for 24 hours before, couldn't drive myself home (or take a bus or taxi the form said?!) and was scared. I'd had oral surgery in high school to remove my wisdom teeth and a small cyst in the front of my jaw bone but nothing else - no broken bones, nothing - and I'm kinda a wienie about pain . . . yes I had two vaginal births and yes I had two epidurals thank you very much (and I said yes to the pain meds after the second one - those afterbirth contractions hurt really bad!!!!)
Travis was there by my side, as he always has been, with prayers and encouragements and funny stories. I remember sitting in the waiting room (because they purposely make you come two or three hours before your procedure intending for you to sit and embrace all your inner anxiety) watching a countdown of the dumbest youtube videos - singing and dancing cats was the winner and brought a few corporate chuckles out of the patients in the lobby. And discussing the new Kindle with a man who just got one - Travis said he wanted to buy me one - he likes buying me lots of expensive gifts even if we don't really have the money or the need - his love language is gift giving and he reeeeeaalllly loves me . . . so I've learned, if he's asking me about something, it's to see if he can buy it for me . . . in the past I've said, "yeah that looks interesting" only meaning just that and wouldn't you know it, by the next occasion he would have bought it (by saving, borrowing, or usually financing). And the incredible thing about it is, even if at the time I thought (okay - wow - I really didn't mean I wanted to have it right now) it is usually something I come to adore and can't believe I could ever live without (that's knowing somebody better than yourself - plus he's just so darn cute and means so well!!)
So, had the endoscopy test - it was weird - they don't put you fully asleep, they just give you some amnesia drug that makes you forget what happened to you . . . and apparently, under the influence of amnesia drugs, I turn into Miss America giving my acceptance speech to anyone who will listen . . . "thank you so much - that was so wonderful" . . . "you are the nicest people I have ever met" . . . to my husband's embarrassment and the nurses delight (they said I will make a very pleasant old lady!!)
The doctor came out right after the test and said where the normal upper GI sphincter would close around the camera, mine was a wide open highway. I was young and a perfect candidate for surgery . . . make my appointment.
YEAH!! We have some answers!! So I asked around - who is the best surgeon to do this surgery and made an appointment with Dr. Millie in Everett. I met with him ready for information to move forward. When I arrived at the office (nervous) they didn't have me on the schedule (clerical error but more stress) and when they finally got me in, I waited for the doctor in the office for another 45 min or so. He finally came in and began. He was pleasant but thorough in his information. He told me it's not an asthma surgery so there is a good possibility they could do the surgery and I'd still have asthma. It's also a very precarious surgery - not cut and dry - and there could be some side effects that were not reversible - like never being able to swallow properly. He also said that because of it's location, it's imperative I have a certain BMI as the pressure of any stomach fat could cause problems. I was soaking it all and asking questions and felt a twinge at this point . . . because of all the steroids I was on for the asthma flare ups, I had gained 40 pounds in 2 months and weighed about 240 . . . in order to even qualify for the surgery, I'd have to lose 40 pounds . . . I thanked him, took my brochures and went to the car where I sobbed, called Travis and my mom. Of course, I didn't want to have un-necessary surgery and more side effects and of course, I wanted to lose 40 pounds but how was I going to do that? If I walked up the stairs, I was out of breath and I was eating relatively normally (could have reduced calories but not THAT much?!) . . . and I was desperate to get well - I didn't want to be this kind of mom or wife or friend that couldn't do anything or go anywhere . . .
I decided to try Curves, a fitness center for women. After I had Haley and was diagnosed with depression/anxiety and feeling less than fabulous about my body, my mother-in-law bought me a membership for my birthday (dangerous gift for some people but my hearts desire at the time) and I worked out three days a week almost without a miss. They weigh and measure you each week at Curves then give you print outs and graphs - and I lost weight - and I got in shape . . . I was in better shape than before I had kids and wore a size 10 jeans for the first time in my life!!! So - based on past results, that is what I decided to do . . . I called Travis and said, "I know we don't have the money to spend but I don't have the time to lose either - I need this surgery if it will help me so I'm going to Curves and signing up and we can figure out how to pay for it later." And I also spoke with McBride again and he said his wife had had some success on the Alli pill that was over the counter and I could safely try that - he said some people have the "explosive diarrhea" side effect but that I'd know right away and if that happened, stop taking it . . . fun.
I was still crying out to God and driving home from the appointment (on my way to buy Alli at Costco - even diarrhea would make me lose weight I thought) and to sign up for Curves. I was planning on asking for a discount in the sign up fee as I was a previous member and then see if I could float a payment till we got paid in two weeks . . . my cell phone rang and it was my mom and she said, "I've spoken with your dad and we want you to get well. If you think Curves and Alli is going to get you there, we're going to pay for it . . . we love you." To which, I sobbed some more and thanked God for parents that heard my heart cry . . .
I went to Curves on Smokey Point Boulevard and met an African-American women with a plan - I told her my story and she agreed to half off the signing fee and filled out my paper work. She did the initial weights and measurements for my chart, gave me my key card and said see ya tomorrow . . .
I drove to Costco and bought a box of Alli and headed home feeling empowered. When Travis got home, we both shared our excitement and fears and gratitude and disbelief towards my parents generosity and took an Alli pill (he said if I'm gonna have explosive diarrhea, he's going to too . . . true love!!)
So - now I am exercising at Curves and taking Alli three times a day . . .
Dr. Millie ordered so more tests with a GI doctor to triple check - he said because my main complaint was asthma and not GI, he wanted to cover every base ahead of time in case it doesn't work and we regret out decisions. My head is still very much in the 'get information' place and I'm still willing to swap/scope/test/sample/scan any part of my body they can to get me well so I agree to two more tests.
I went to have the tests in Everett with no idea what they were, and frankly no care to know - I was going to have it anyway - might as well not get worried about it ahead of time. I found childcare and took myself right in. This was truly one of the most horrible days I have ever had and in hindsight, would have brought some to coach me through the experience and asked to be pre-medicated for nerves and pain . . . they took a little tiny camera and slowly thread it up through my nose all the way down my esophagus to look at the upper-gi sphincter. To help this process, the nurse took a long q-tip and swapped some topical numbing gel on the opening to my nose and a bit inside . . . if you are reading this and have anything to do with this process - this 'numbing gel in the nose bit' does Jack-Crap and only makes you more nervous about what is to come . . . this needs to change for people that have to have this test - and you should have a giant milkshake machine on your office counter to give out HUGE milkshakes to every person who has to go through this and science needs to make this a priority in improvement - there has got to be a better way - if our cell phones can call and text and email and take picture and video from the most remote location of the earth, surely they can come up with a camera smaller and less painful process to check on GI problems . . . work on that Microsoft!! You might need this test someday and YOU WON'T LIKE IT!!!
Immediately tears started running down my face in rivers - it hurt sooooooo bad!! The nursing staff was wonderful and professional and kind and encouraging but didn't and couldn't stop the hurting - they were just doing my job - which I PAID THEM TO DO?!
After the tube is forcibly placed within the right spot, they tape the camera down to your nose and proceed with testing . . . does this sound like third world war criminal war techniques yet cause that's what it felt like . . . when the huge piece of tape is stuck uncomfortably on your nose, they give you a cup of water and a straw and tell you to take sips and swallow on their command holding your breath in between . . . oh yeah, don't swallow in between the actual test swallows because it will mess up the results and they'll have to do it again. Neat. And hard. Because your body is not made to have a microscopic camera (which is a relative description?!) pushed down your nose into your upper esophagus and it does things involuntary to get it out - like swallow and gag . . . and this is all the time, messing up the results and the nurses are saying "almost . . . try really hard . . . you're doing really good . . ." and I am thinking I wish I was dead now - I change my mind - I don't care what wrong with me - I believe in Jesus and know I'm going to heaven and know God will provide for my husband and children . . .
We finally get through all the necessary swallows and holds without swallowing between swallows (I just had to take a deep breath because I could literally feel the pain back from that day - I'm tempted to take a pain pill just for the memory?!) and the nurse removed the camera of torture. The doctor said "you have a wide open highway and are a perfect candidate for surgery." (To which I wanted to hurt someone - but was thankful I went through that for a reason - confirmation - we FINALLY have the answer we have been searching for for months and there is an end to this journey - there's a break in the case and it's something that has a surgery solution!! YEAH . . . and then they tell me I still have one more test. I said what is it and they said they were going to re-insert a smaller version of the same camera (to which I questioned why I was not given an option sooner . . . do I have a big nose?!) and take it to the end of my nose and send me home like that to record acid events all day and night and return the next day exactly 24 hours from insertion to return the event recorder and get the camera taken out. WHAT?! I said, "okay - seems like we got pretty clear and similar results with this office test as we did the endoscopy. Can't we just call it a day and follow up with the surgeon about moving forward?" I only have an associates degree from a community college but I think God gave me a generous portion of common sense and this makes sense. To which the doctor said, "well, because your main complaint is asthma and this may or may not cure your asthma, we're going to go ahead and do it just in case." JUST IN CASE OF WHAT?! IT'S MY FACE AND MY SURGERY AND IF I SIGN A PAPER THAT SAYS I'LL NEVER SAY I WISH I HAD A CAMERA IN MY NOSE FOR 24 HOURS THEN WHAT IS THE DEAL?????!!!! (A good friend of ours inappropriately uses the texting slang "WTF?!" when things are crazy and this was definitely a WTF and I don't think an inappropriate use of the word?! Can I get a witness? Davey?)
So, they did another little camera in my nose and if it was smaller it must have been 'microscopically smaller' because it still made me gag and my eyes water and a strong desire to die to rise up in me . . . if I would have had a button from God at that point that I could have pushed if I wanted to end my life, I would have pushed it . . . for sure . . . and been glad!!!!
And then they went about taping it to my nose. Now I'm a woman so I intrinsically care how I look on some level but I am not overly image driven and remember feeling very sick and smart enough to have my priorities straight BUT I looked a HOT MESS . . . it is soooo wrong. They should allow you to stay in a pretty room over night while you have this test so you don't have to go to the outside world - they should bring you milkshakes whenever you want them and pain pills and tv or movies or books or games or anything you want to pass the time . . . instead they give you a three minute lesson on what buttons to push on the event recorder (a pager looking thing that is hooked onto the tube that is down your esophageal tube - yuck.) then they tell you what time you have to come back to have it taken out - not a moment earlier - and send you on your way with a little scrap of paper to journal every time you eat, sleep, or lay down. Right. (and ps - don't have alcohol or carbonation) Now I am not an alcoholic but I do enjoy a good glass of wine occasionally or a fun drink when I'm out at a restaurant with my husband. I don't know a lot about alcohol and didn't take a sip till I was out of high school and in an adult setting BUT if ever there was a time in which you'd like to grab a big container of something alcoholic and drink it, it is now . . . and you can't . . . or it will mess up the results and there is a possibility they'd have to do it again . . . hell no. . . I'll follow every rule like it's the bible.
I was supposed to pick my daughter up at the bus stop at 3:20 that day but afraid of scaring the neighborhood children. I texted my neighbor Mandi to get her, warn her what her mommy looked liked and send her home . . . and I called my friend Theresa who was taking care of Haley during this time and said I don't know what you're going to say but I look like Quasi Modo and I don't want to scare my child. She said she'd talk to her and home I went . . . now remember this tube is sticking out my face attached to a pager so EVERYTIME I MOVE I can feel this tube down my esophagus which still hurts like a mother from being so violated in the office earlier. And I went to McDonald's drive through and I ordered a large vanilla milkshake because I'm a self-soother and thought the cold might feel good. I tried to cover my offensive nose as I paid by holding my hand up in front of my face but I still got some crazy looks . . . "I KNOW" (I wanted to yell)
We were supposed to go to Life Group that night at our church (couples bible study) but there was no way I was leaving my house again until it was time to take this out. I didn't feel good - I didn't look good - and I could feel mine esophagus every time I swallowed or breathed or bumped the 'event recorder'. . . not conducive to social prayer and biblical study. I emailed our leaders to let them know why we'd be absent (always a student?!) and Brian, my life group leader, emailed back and said, "oh yeah - I've had that - it's creepy - and if you turn off all the lights in the bathroom and look in your throat you can see a little light down there from the camera!!" Thanks . . .
24 hours could not pass quick enough . . . I had some events, wrote them down in the journal, pushed the buttons on the pager, laid down, stood up, had spicy pizza to try and bring on reflux (to which I just remembered that I had to be reflux-medicine free during all these invasive tests in order to not skew the results . . . and guess what? my asthma came back and I noticed reflux symptoms . . . weird?!) When the time finally came I ran to the car, drove really fast and presented myself to the receptionist. She was pleasant and got me back as quick as possible to which they finally removed the foreign object out of my orifice and I cried . . . I was finally done!!!!! They downloaded the event recorder on their computer to make sure it worked, went over my journal to which they said they'd never been given a more thorough one (thank you very much says the type A student within) and I went to McDonalds for another large vanilla milkshake - more self soothing and more pain in throat.
Went back on my acid reducers, made an appt with Dr. Millie and prepared myself mentally to have surgery. Relief.
Until I went back to Dr. Millie. Now remember, I have good insurance and good doctors and have done LOOOOTS of research to find the best people to make me better. Dr. McBride told me if it was his wife, he'd send her to Dr. Millie. He references all his patients there and has had great success . . . he's the best at what he does. Awesome. NOOOOOOOTTTTT. Again I sat in the office for WAAAAYYY to long to be called back, got weighed and then sat in a patient room for WAAAYYYY to long. Now I understand schedules get busy and I'm a mom for goodness sake - I fully get the inability to gauge every scenario and the amount of time it will take to complete each task with every variable possible in the world but two times in a row being left for WAAAAYYYY to long is unacceptable and dishonoring of my time - I had to find a babysitter to be at the appointment and I am paying to be there?!
When Dr. Millie finally graced me with his presence, he started from the get go with a chip on his shoulder. He told me the results from the home study showed normal levels of acid and that he didn't think acid reflux was my problem. He saw on my chart that I was taking medication for anxiety and depression so he eluded to the fact that maybe I was worrying unnecessarily and said "why would you want to have a surgery you don't need?" End of discussion - I tried to ask a few questions to which he put me off and told me to follow up with my GI doctor and left.
I was deflated. There was no way that two previous tests have shown with clear results that I have a 'wide open highway' and now suddenly it 'didn't show up' and there was no way that 4 good doctors I was working with thought this was the problem and it suddenly wasn't. I believe in God and I believe in miraculous healing but I also believe that sometimes our bodies don't work and I KNEW mine was not working.
I walked looooooonnnnngggg walk back to the parking garage at Providence Hospital, sat in my car, called my mom and Travis and sobbed. I have been very blessed in my life to have been born in the family that I was in the community that I was and although I sustained the average childhood taunts and teasing, I had NEVER been made to feel so small or so dumb and it hurt. I could hardly get my words out. Both Travis and my mom listened and encouraged and said how sorry they were I had to go through that (and alone again?! maybe this whole independence I have hung on to so tightly my whole life is not good?!) and both encouraged me to go back to one of the GI doctors I had seen previously and not give up . . . we've come tooo far . . .
I made an appointment to see Dr. Davis is Mill Creek. He was baffled . . . said it didn't make sense and confirmed my intuition about the previous two tests . . . he called around for me and said they had the results, wasn't an information error - just didn't know why they didn't match. He also listened to my report about the way I was treated in Dr. Millie's office and apologized on behalf of a fellow doctor. He said that he had done previous business with Dr. Millie and had found him to be a professional. Also, said doctors are human and maybe he had a really bad day with patients or personal life . . . regardless he said it was inappropriate and not fair to me and he'd let the office know he was disappointed. He also said that Dr. Graves is a well known surgeon and has preformed plenty of Nissen Fundoplications (which is what my surgery is called). The only hypothesis he came up with about the bunk test results (and this side of heaven we'll never know for sure) is that the person who inserted to camera may have fed it to far causing the camera to turn back up and be to high in the esophagus to register the acid that was splashing up) . . . neither here nor there, the point is, two tests clearly showed physiological reports that my upper sphincter did not sphinct and that could be fixed with surgery. He said for further confirmation, I could have the through-the-nose test again to which I said it was physically impossible for me to do again (and I am not a quitter and I want to get well but I have my limits and that is it). He said that instead, I could have another endoscopy to which I said, "bring it on." I left the office with my faith in the medical world restored and excitement to move on.
I had another endoscopy - was more aware this time but in no pain expect a little throat soreness after and again it showed . . . wide . . . open . . . highway.
I met with Dr. Graves, a kind, serious man . . . who said, "you're a perfect candidate for surgery - any questions?" I asked him what report he was basing his decision on and he said the original endoscopy was very clear and if I was his patient originally, he would not have ordered any additional testing but would have moved forward at that point. (I was soooooo mad - not only did Dr. Millie belittle me but he chose to put me through the most painful series of testing possible for no reason except his own fear of future litigation if something went wrong - THAT IS NOT RIGHT!!) If you're reading this and have any power to do anything, do it . . . please . . . I'd love nothing more than to be a part of preventing this kind of treatment from happening to other people - health care is scary and expensive enough - we need good people to do a good job.
I went out into the waiting room and this surreal out of body feeling began - I could not believe after all this time and all these tests and all these tears and all this work, we had figured out a solution and it was happening fast . . . surgery got scheduled in three weeks. Wow.
I walked the long walk to the park and ride this time praising God and feeling so much hope . . . then called Trav to tell him I'd be having surgery within three weeks . . . they flew by and surgery day was here - I could fill an entire book on that experience as well - the readers digest version is that the surgery went incredibly, recovery was long and painful and hard but I went 6 months without drugs or asthma issues of any kind!! WOWOWOWOWOWO!
Now, having that much acid in your mouth constantly causes other problems including dental issues . . . so after surgery and life re-adjusted, I made myself an appointment to see Dr. Dykstra in Arlington . . .
The receptionist was so warm and sweet and started my appointment right . . . then handed me over to my dental hygienist . . .
She dealt with ALL of my questions with a huge smile, made me laugh and I truly enjoyed her company (you know you're a mom when the day at the denstist is like a day at the spa?!)
They checked my x-rays and used the little hook tool and found 14 cavities!!! WOW - I've had about 4 my entire life - have a little issue with brushing and flossing my teeth to much - what could have happened?! Well . . . all the cavities are on the left side of my mouth and I sleep on the left side of my body so for about a year, I was sleeping in acid - sounds pleasant - lets fix it . . .and while we're at it, let's get bleaching trays that I've wanted for 10 years but could never afford . . .
The mold making process for the whitneing trays brought back so many memories of Jr. High braces - it wasn't even funny - but I'm looking forward to the date (in a few weeks) when I get to get these cavities taken care of, pick up bleach trays, and move on with OPERATION HEALTHY KARLA . . . I'll let ya know how that goes!
No comments:
Post a Comment
I love to hear from you!! Thanks for taking the time to leave a comment.