So Many Doctors!

So, you know how we thought we had an answer? Well, we don't. Poop. I went to the ENT specialist at the U and they tried to duplicate the findings of the bronchoscopy with an in-office scope that only went down to the vocal chords. After injecting my throat with local anesthetic and inhaling a numbing something, they did one pass of the camera and told me everything looked normal. The dr, who was awesome by the way, then left the room to set up a treadmill test, and that's when I lost it. I just started crying, because I was expecting a quick fix, an easy answer to months of not feeling well, and I was being told that I probably wouldn't get that yet. My Nana was my angel again, and held my hand, gave me hugs, and reassured me again. She's been an amazing support during all of this, and I don't know what I would do without her! But, those poor doctors received a shock when they walked back in to find a patient falling apart over something not being wrong...I bet that was first :)

Next, they put me on a treadmill with an oxygen monitor on, and as I started exerting myself, my blood oxygen levels dropped pretty low, pretty quickly. They then brought me back to the exam room and did the scope again to see if anything changes structurally when I am symptomatic. It doesn't. So, at least we have recorded what happens when I get swollen, dizzy, and feel like I'm going to black out. We still don't know why this is happening though. Generally, this drop in oxygen means that there is some miscommunication between the heart and lungs, but there are hundreds of things that can cause that. So, now I get to go to a new doctor, a world renowned exercise kinesthesiologist, who is hopefully going to be able to pinpoint where the disconnect is happening, and back to the pulmonology department at the U where they will probably do another type of echocardiogram and a longer Holter monitor test. So, we're not back at square one, because we know what's happening, just not why.

Also, I'm going to have to have a sleep test done, because my oxygen levels fall at night too, so there's probably some sort of apnea something going on. I'll update when I have that done too, because treating that would probably at the least help me not feel so tired all the time, which would be awesome! So, right now, I'm just in a holding pattern, waiting for more tests, which will hopefully lead to answers. I'm keeping busy with work and my sweet boys, and trying to stay positive, which works most of the time. Thanks so much for all the continued support and kind thoughts, it makes a world of difference!

I LOVE THE U OF U! (hospital)

Well, I finally left Central Utah Clinic entirely when the new doctor suggested, about 2 minutes after me telling him that I have Celiac's, that my swelling was due to too much pasta and bread in my diet. REALLY?! Do you really pay so little attention to your patients that you miss that HUGE detail that effects every single system in the body? So, I left, and filed a complaint with the head of the department, who actually got back to me and was pretty appalled at my level of care. I'm glad he knows that his department is horrible, but it doesn't change the fact that I have more answers in the 72 hours I've spent under the care of the doctors at the University of Utah Hospital than I have in 3 months with his doctors.  Oh well, live and learn, right?

Doing a complete 180 from that experience, I had my first appointment with the UofU pulmonology clinic on Wednesday, and they not only spent over an hour evaluating me and getting every single piece of history they could think of, but they ordered blood work, another Pulmonary Function Test, a walking O2 test, a CT of my chest, and scheduled a bronchoscopy for today! With all of that, we've ruled out all the scary stuff! Yay! There are no blood clots in my lungs, no tumors or masses obstructing my airway, and the bronchoscopy showed that I have a piece of tissue that's falling down over my voice box and obstructing my airway, and probably some apnea that's just exacerbating the situation. It's not something Dr. Hatton is familiar with, or specializes in, but he is consulting an Ear, Nose and Throat specialist, going over all my scans and scope, and coming up with a treatment plan, that will probably be finalized next week! The end of this mess is in sight! Yes, I'll probably have to get that little, annoying piece of skin taken out of my throat, but it's a solution! I'll be feeling better! I cannot accurately describe the level of relief I have, and the complete trust I have, not only in the doctors at the U, but in the entire staff. My experience up there has been wonderful.

Lastly, I need to thank my Nana for being my support and advocate through all of this. She really has been my angel throughout this process, and held my hand through many tests, including the nerve-wracking prep for my procedure today. She's dropped everything to make sure I have the best care available, and I am forever grateful to her for her selfless love that she shows to me time and time again. We were talking about how our Heavenly Father places earthly and heavenly angels in our path to help us in times of need, and I am so sure that she is one of those angels that our Father relies on to help take care of his children, because she shows this level of love not only to her family, but to every person who is lucky enough to know her. So, THANK YOU NANA! I love you so much!

This waiting game is hard!

      Well, this week I went back to my Cardiologist for a follow up, and he said that he is pretty sure my heart is healthy, which is great! We still don't know what's happening though, so he ordered the next round of tests. I had more blood work and a chest x-ray, which both came back normal, this Wednesday I'll be having an ultrasound of the blood vessels in my legs, and next Wednesday I'll have a pulmonary function test done.

     At this past visit my amazing Nana came with me to be my support, advocate, and extra set of ears. She more than rose to the occasion and in her unique way, called the doctor out on his lack of answers for us thus far. She and I both were underwhelmed with his bedside manner and his ability to answer questions, and when I asked a question about whether we had ruled out a specific condition and got the answer "probably", we both decided it was time to change doctors. So, after this next round of tests, I'll be seeing a new cardiologist who will hopefully be more ready to answer my questions and walk me through this anxious time.

   My biggest issue with my previous cardiologist was that he didn't approach my concerns with any sense of urgency. Yes, I know I'm not dying right this second, but my condition, whatever it is, is still urgent to me. If my experience with doctors not diagnosing my celiacs for 9 months taught me anything, it's that I have to be my own advocate. And the fact is, I don't currently have enough energy to be the mother and wife that I want to be, so this is very urgent, and I will stand up for myself and find a doctor who will treat it as such. Hopefully we'll get some answers over these next few weeks, and hopefully this next doctor will be better suited to answer my questions.

     Thank you so much to my family and friends who have continually offered support and love, and thank you, thank you, thank you to my amazing Nana! I love her so much, and she's helping me through another scary time, and just having her with me makes me feel better. I'll keep you all updated as I know more!

Well, life kinda sucks sometimes, but at the same time, it's great.

Well, it's obviously been forever since I posted anything here, and I'm not going to apologize, because all of you have seen my Facebook posts, so you know the basics. However, there's been some stuff going on that I haven't shared with everyone, but it's starting to effect my ability to do things with others.  So, rather than explain it to every individual, I'll blog about it :)

  Starting in May my feet started swelling pretty badly, and I started having a hard time breathing while doing the simplest of physical tasks. I started drinking much more water, watching my salt intake, all the basics. However, it kept getting worse. I finally decided to go to the doctor after 2 minutes into a hike with my awesome Young Women, I had to turn back. My feet were swelling so badly my shoes hurt, and my chest felt like it was about to burst. I could feel my pulse in my face, and it took about half an hour for me to catch my breath. That was my wakeup call. I went to my regular doctor who did blood work (normal except for moderate vitamin D deficiency, which is common in people with Celiac's Disease) and ordered an Echocardiogram and a Holter Monitor, which is essentially an EKG you wear for 24 hours. The Echo was normal (yay!) but there were some abnormalities on the monitor. Specifically, I had pretty frequent Premature Atrial Complexes, which basically means my Atrium would throw an extra beat in just for funsies. This condition on its own is pretty normal, about 50% of healthy people experience this occasionally with no ill effects. However, combined with my swelling, chest tightness, swelling and dizziness, it could point to some underlying circulatory issues. This is when my regular physician referred me to a Cardiologist.

    I've only had one appointment with my cardiologist so far, and he ordered a stress Echo to make sure my heart is ok when I exercise. That came back normal, which basically means there's something wrong, but it's not in my heart, which is really good news! The bad news is, we still don't know what's wrong with me, and I'm getting more tired every day. This is why I'm limiting my friend time, because most days I barely have enough energy for my boys, and they come first. :)

   Emotionally, it's been rough. The last time I didn't know what was wrong, I was sick for 10 months before I was diagnosed with Celiac's. It took a huge toll on my mental state, and I barely recognized myself. However, this time I have my boys, who bring me so much joy. I love them so much, and am keeping myself optimistic and (mostly) happy for them. It's hard when mommy's too tired to play, but Andrew is one of the most loving, sensitive boys, and has been snuggling with me much more often, which is pretty out of character for him. I am relying on my faith much more this time around, and keeping myself as busy as possible so I don't have too much time to feel sorry for myself. It still happens, of course, but my family is enough to remind me that I don't have time for self-pity.

   Long story short, I'm sorry if I bum out on plans, it's not you, it's me! I love you all, and am so grateful for my family, and my Savior, who I have come to rely on for comfort and peace.

36 weeks

Hi all!! It's Emily here and I guess it's my turn to update you on how the little booger is doing.  So we are 36 weeks into this thing which means there are only four more weeks left until we get to see the bug-eyed little monster.  And he couldn't be coming fast enough!!  If I have to hear about any more aching backs, swollen feet, pinched nerves, or small bladders I might just have to impersonate the doctor and order an emergency delivery, myself! Well you probably didn't come on here to listen to me complain; that's what Kay is for! HAHAHA I'm just kidding!  I love my sister so much and I can't wait to be an aunt!  So the little trouble maker is now the size of...well...he's pretty much the size of a baby.  No food comparisons here, I have a hard time imagining eating 7 lbs worth of anything!  I'm not really sure how this whole pregnancy thing works so I don't know everything that is going on inside there and, quite frankly, I'm perfectly happy to remain ignorant to the subject, but I do know that there is a lot of kicking and hiccuping and kickboxing.  Well that is really all I have to say on the subject.  I'm sure you'll be hearing from me within the next few weeks, I'll be the one pacing in the waiting room, updating everyone on all of the screaming going on!  

Week 34

So, we're not so good at updating this thing anymore....sorry :(  Would it make a difference if I said we were really busy getting ready for Andrew's grand entrance?  Anyways, this week marks the end of my 8th month (pregnancy is really closer to 10 months, the 9 month thing is just to make it sound a little less icky) and I am SO READY to get this kid out!  And at our last Dr's appointment, the Dr guessed that he could weigh as much as 6 1/2 lbs!  It's very possible that he's smaller than that too, weight guessing is not an exact science, but he said he'd still be keeping a close eye on Andrew's size over the next few weeks, because the last thing I want to do is deliver an 11 lb baby.  So, long story short, Andrew's almost as big as a full sized new born, and could possibly come a few weeks earlier than Nov. 9th, which would be very welcome :)

As far as the baby's room goes, we're all ready!!!  I have everything all set up, the crib is made, the diapers and wipes are all organized, and his dresser/cubbies are full of super cute clothes just waiting for him to snuggle in!  At this point, we're just playing the waiting game.  We're so excited to meet our little man!  We love you all, and can't wait for you all to fall in love Andrew like we have :)

week 24

So, it's been a lot more than a little while since I last updated this thing...sorry!  In my defense, there's been a lot going on :)  Let's see, since I last updated this thing, we've found out that our little baby is a little boy (but you all know that already) and we've also named him Andrew Reid (y'all knew that too).  Now, things you may not know.... We moved into a new apartment with 2 bedrooms, central air and a washer and dryer and I LOVE it!  It has plenty of room for our little family of soon to be 3 and is very comfortable :)  We have a crib, changing table and dresser all set up and waiting for our little man.  We also bought a travel system (carseat and matching stroller) that I really love....it's compact, tall, light, durable and, most importantly, one of the safest ones out there.

As far as the pregnancy goes, all is going pretty darn well, which is very nice!  I'm feeling MUCH better, only puking once a week/every other week and i'm not constantly queasy!!!  YAY!  I'm getting pretty huge, and I ALWAYS have to pee, but nothing out of the ordinary :)

And as for little Andrew, he's getting (relatively) GIANT!!  He's a pound and half this week, and set to gain 6 ounces a week!  His face is fully formed with eye-brows, eye-lashes and hair :)  He's moving A LOT and getting stronger by the day.

Well, that's all for now!   Love you all!!!