Monday, August 28, 2017

cleveland, part two

Hey, friends! Happy Monday!

I'm continuing my post from last week about our trip to Cleveland for my appointment with Cleveland Clinic (see my last post HERE). This post is all about the medical parts of our trip.

For any of this to make sense, let me start at the beginning.

I posted after I had my gallbladder removed that I was having worsening problems within my stomach (see it HERE) and I was starting the journey with my team of doctors to figure out what was happening.

A couple of months ago, my GI doctor told me he wanted to do an endoscopy to see if I had anything like ulcers, celiac disease, etc. that could be causing severe acid reflux. I had one of these done a few years prior and I knew what to expect, so I wasn't worried about the procedure.

I had my endoscopy done, and I had a follow up appointment scheduled for the next week.

A couple of days before my appointment, the receptionist from my GI's office called me and said they needed to reschedule - for a month and a half later (end of August). They didn't give me a reason and they were very short with me. I was in so much pain at this point, and it was hit and miss if I was able to eat that day or not.

I was so upset that they kind of just left me hanging without a reason, so I called my primary doctor to see if he could give me the results of the endoscopy. He said that while my stomach was red and swollen, nothing was present that gave a definite answer to what was going on. But - he also said that he wasn't able to see me since I had a specialist and that I would just have to wait for my appointment.

I was "surviving" for about three weeks after that. I usually couldn't eat more than a few bites of food, my current medicine wasn't helping, and I was in pain and nauseous all the time. Thankfully Kyle only works part-time so he was home to help me out, otherwise I have no idea what I would have done trying to take care of Lilli by myself.

Around that three week mark, I had a really bad night of stomach pain. I couldn't get comfortable because I had a searing pain reaching from my upper stomach to my back. I wasn't able to fall asleep and I was so nauseous that it was keeping me awake. I was really concerned that I had another case of pancreatitis, but I wasn't able to drive myself to the hospital and I didn't want to wake Lilli up for Kyle to come with me. I told him that we could see how I was feeling in the morning and go from there.

Fast forward to about 6 in the morning. I was laying in bed and the pain had gotten worse overnight. It was hard to breathe, and the nausea was so bad that I couldn't stand up. Kyle had an appointment or something that morning, and I told him to hurry because I needed him to take me to the hospital. Lilli was still asleep when he left, and when she woke up, it took me about 15 minutes to get out of bed through the pain. It was absolutely horrific.

I got to her room and I couldn't lift her out of bed. I guided her down and she kept saying "mommy, ok?". I was sobbing, but I didn't want her to be scared, so I gave her a Poptart and let her watch Mickey. I went and laid on the bathroom floor because I was sure I was going to get sick.

I'll save you the gross parts of this, but let's just say I was right, about four times worth.

Kyle got home and I was really scared at this point. I couldn't stop vomiting, my head was pounding, the pain was getting worse, and I felt extremely lightheaded. He drove me to the hospital, and they immediately gave me a double dose of nausea medicine and some Morphine to help me with the pain.

They took some blood work, and the doctor said it sounded like another case of pancreatitis. It was taking a while for the blood to come through, and at some point during the time we were waiting, I literally thought my stomach had burst. The pain went from horrible to "I think I'm dying" in about 10 seconds. I was screaming, I couldn't breathe, my BP was through the roof and my oxygen was non-existent. Another nurse came in and gave me another dose of pain medicine, but it didn't do anything for the pain. I know this sounds dramatic, but I am being 110% serious that I thought I was going to die. I had never felt pain like that in my whole life (even birth contractions felt like a breeze compared to this pain).

The nurse came back in and had me drink some numbing medicine that would numb my stomach. It took about 15 minutes, but the pain finally subsided to manageable. I was so out of it, but I remember the doctor coming back in and saying that my pancreas was fine, and they suspected an ileus, which is an obstruction of your small bowel. They admitted me and told me that I could see the hospital GI the next day.

I was so nauseous the entire time I was in the hospital (three days). I wasn't able to keep anything down, and they had me on so much nausea medicine that I swear the hospital was close to running out.

I saw the GI doctor the next day, and he said that he didn't think it was an ileus, but maybe some sort of motility disorder. He apologized and said that he wasn't able to make a definitive diagnosis, and that I would have to see my primary GI doctor for a follow up.

They waited to discharge me until I was able to keep clear liquids down, and they told me to stay on a clear liquid diet until I saw my GI. However, I called my GI and they told me he was still out of the office and they didn't know when he would be back. So, I called my primary doctor and told them what had happened, and they agreed to see me since I literally had no where else to go.

I saw my primary doctor the day after my discharge. At this point, the only thing I could keep down is Gatorade, and I'm sure I looked absolutely awful when I walked into his office. He kept apologizing for not seeing me the first time around and he felt bad about how bad of shape I was in. He perscribed me a stronger nausea medicine, and he said that he also thought it was a motility disorder, but he wanted to refer me to Cleveland Clinic for an official diagnosis.

Before I continue, I should mention what a motility disorder is, specifically one of the upper stomach. It basically means that the upper stomach stopped emptying/digesting food and had a moment of paralysis. Everything you eat gets backed up, causing vomiting, nausea, etc. Diseases such as IBS are also a motility disorder, just one of your large intestine versus the upper stomach.

Does any of that make sense?? I hope so.

Anyway, on to the next part of this massive story.

When my doctor sent over a referral to Cleveland Clinic, he told me it would take a while to get in, probably months. I was so discouraged and depressed (just being real) at this point that I just said "okay" and went home, expecting to be drinking Gatorade and meal replacement shakes for however many months.

Then, unexpectedly, a week later I got a call from CC saying that they had a last minute opening for the following week. I said that I would be there (before I asked Kyle if he had that day off, thought about child care for Lilli, etc. because I was going to be there no matter what, haha) and scheduled the appointment. We live about 4 hours away from Cleveland, and my appointment was at 9 in the morning with an 8:45 arrival, so Kyle and I went up two days in advance so we could spend a day together exploring Cleveland and getting our minds off this mess (that's what my last post was about).

So, now here it is, the day of my appointment. I was so nervous for my appointment that I couldn't eat anything (I'm at a point now where I can usually eat a small, bland, solid meal once or twice a day).

The nervousness got worse when we got to the clinic campus. It was huge and we got so, so lost. We had no idea where to park, where to go, what building to be in. We were literally running around trying to find this office. It took us 20 minutes to find the office, and I was so upset because everyone that we had asked where to go had been so rude to us. We were both tired and frustrated at this point.

We waited forty-five minutes before I was called back to see the doctor. We finally get settled in a room, the doctor comes in (he was very nice) and I start my story.

About three sentences in, he says, "Wait, so it's not your pancreas causing these problems?"
I say, "No, not that I'm aware. It's my upper stomach."
"Well, I really hate to say this, but they referred you to the wrong GI doctor. I specialize in the pancreas, not with motility disorders or upper stomach issues."

I literally about hit the floor, and Kyle literally cussed out loud.

He said that before he referred me to the real doctor I'm supposed to be seeing, he wanted to redo my endoscopy with a further scope into my pancreas to check it out. He also said that he doesn't think it's a motility disorder of the upper stomach, but that it's either bile reflux or IBS. He can treat me for the bile reflux, but not IBS. He gave me some medicine that aids in helping bile reflux pass through my stomach (there is no cure for bile reflux, or IBS) to see if it would help.

So, I walk out of the office to schedule the endoscopy, and the receptionist tells me the soonest they have available is October. I literally signed the papers with tears blurring my vision, and cried the entire next hour we were there while I got blood work done and my prescription filled (which was literally a mess that I don't want to go into, but let's just say I was extremely unimpressed with Cleveland Clinic.)

Fast forward to the next day. We're home and settling back in. I decided to take one last shot at my GI here in town because, quite frankly, both offices stink but this one at least is in town and doesn't cost a small fortune to go see. I have an appointment with him at the end of September to see if he can figure out what is actually going on. Depending on how that goes, I'll decide whether or not to go back to Cleveland in October.

I'm really honestly at the point where I'm not expecting answers. The bile reflux medicine the GI in Cleveland gave me made me vomit, so I already know that's not going to work. There's a couple homeopathic (is that the word I'm looking for?) remedies that I want to try that don't involve medicine, since none of that is working anyway. I'm sick and tired of being sick and tired, and I can't help but be upset that I agreed to have my gallbladder taken out and it made everything worse. But, I won't let this ruin or run my life. My life came to a crashing halt with all my bouts of pancreatitis, and I'm not willing to let this do the same.

via
It sucks, and I know people are probably tired of hearing that I don't feel well. I know that people look at me and say, "But you look fine."

Let me let you in on secret: I look fine because I need to be fine. I need to push past this because I need to be a wife, I need to be a mother, I need to be a writer, I need to be a good friend.

If you're looking at me, whether physically or on social media, and thinking, "She looks fine and I'm tired of hearing her complain"... then know I'm saying right back, "I'm trying not to vomit all over you and makeup is magic."

But let me also be clear: I have truly found who my real friends are during this entire process. Friends/family that drop by with flowers or a meal, friends/family who text or call to see if they can help me that week, friends on social media that I've never even met that check in on me, bloggers/friends who follow me and my journey consistently (hey, Lindsay at Lindsay's Sweet World!). I cannot express how much your love and kindness mean to me. This has been one of the most difficult times of my life, but it doesn't seem so bad when I have friends/family who love me, despite my constant battles with my health.

Kindness goes a whole heck of a long way.



6 comments:

  1. Oh Brandi. I can't even imagine what you're going through. It really sucks. I was SO hoping that the other half of this story had a happier ending, or at least SOME KIND of light at the end of the tunnel. I hate that everything is still up in the air. I understand completely how frustrating it is not to have medical answers that you need. It blows my mind that this day in time there are some things that doctors and other medical people still can't figure out. I can't imagine having that kind of nausea/pain all the time like you're having. I wouldn't even be able to function. Anyway, I'm rambling so I'll stop now. But just know that I will continue to pray for you until you get some answers and find your way back to good health. I'm so sorry you're going through this.

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    1. Lindsay, you read my mind about so many health issues going unresolved this day in age. It makes it all the more frustrating! I appreciate your prayers so much, and I have been praying for some relief for your back, too! Thank you for all of your sweet words. <3

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  2. Oh my gosh girl! I am so sorry that all of this is happening to you. I can imagine that you just want an answer. I'm sending you so many well wishes and lots of prayers your way.

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    1. Thank you, Biana! I really appreciate it.

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  3. Oh my gosh Brandi. My heart breaks for you and not getting the answers you hope for and need. Thank you for sharing an update. I hope you get some answers soon.

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