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I'm unique, but I'm also abnormal

Thursday, December 08, 2011

Today I had an esophageal manometry (manometry is testing the muscles and pressure in an area of the body) and rectal manometry. Both were difficult and very painful for me. Still I kept trying to crack little jokes and keep my spirits up. Then I laid on a stretcher for 2 1/2 hours waiting for my endoscopy and to get my pH meter placed. When they took me back it was a flurry of activity but I was still awake... then suddenly I was waking up. I had to have extra anesthesia to knock me out, so it took almost 2 hours (from what I was told) after the procedure was done before I was even semi-awake. I've been in non-stop pain since then. The pH meter is a thin tube that goes down my nose and into my esophagus. My throat and esophagus are HATING it and keep trying to reject it. I tried to eat a little, but it just hurts too much. I barely got back to the hotel and I had already lost my voice. My body just does not like foreign objects!

When we got back to the hotel I looked at the results of the endoscopy and to be honest I'm partly relieved and also quite worried. Both my pylorus (opening from the stomach to the duodenum) and the 2nd half of my duodenum (which feeds into the top of the small intestine) are deformed. The findings also say "The second part of the duodenum appeared to be abnormally located." The bad part is obvious: there's clearly something wrong. The good part is they found something wrong that all those other doctors missed or didn't care to find! The procedure notes say: "The upper GI endoscopy was technically difficult and complex due to unusual anatomy." I want to go to a few previous doctors and say "na na I told you so".

Everyone there has been so great to me, doing little extra things to help me and being kind. I asked my dad to stop on the way back to the hotel to get a thank you card that I can give to the department tomorrow. It's not much, but I wanted to show my appreciation.

The people at the hotel have been really great too. If you're ever going to be in Philly near city hall and the convention center, the Hampton Inn at 1301 Race Street is a great place. See if you can meet Stephanie Stephens - she's been absolutely incredible to us. Many others have been kind and taken a few minutes out of their day to help me out as well. (If you're in town to go to Temple, it's 3.5 miles away and almost a straight shot.)

Tomorrow I should get at least most of the results (biopsies from today's endoscopy will take about 2 weeks). I'm curious to see what the doctor's take is on all this and how he wants to treat it. Though I'm also scared to find out what will happen. I have all the worst possibilities staring me down but I'm trying to ignore them until I know for sure. With all of the knowledge I have I can scare the heck out of myself with what is 'possible', but I don't have quite enough knowledge to know what is 'probable'.

  Member Comments About This Blog Post:

LOLADUVALL 12/9/2011 3:52PM

    Finally. At least now they can chose a direction in which to go and hopefully a helpful treatment. I'm so glad you may have some relief in your future.

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MOM2ACAT 12/9/2011 3:41PM

    I'm glad that you have found someone who believes you and has taken your condition seriously; now I hope you are on the road to getting a treatment that will make you feel better!

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MANDI99P 12/9/2011 9:54AM

    It seems like a weird thing to say, but I'm so glad that they found something wrong. Its just that you have known that something was wrong for a long time, and now you have the test results that prove that. I know that I have said it over and over, but I am so proud of you for staying strong and fighting. Try not to get to stressed out untill you know all the results and treatment options. I'm sure there will be choices to make, but it sounds like you have finally found some great doctors that with help figure out the best treatment plan for you. And of course, I will be here whenever you need me.


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emptying study today, 4 tests tomorrow

Wednesday, December 07, 2011

The gastric emptying study was today. Since this is my 3rd, I think I have an idea of what's going on when looking at the pictures (not that I'm sure I'm right) but after 3 hours it looked like everything was sitting at the bottom of my stomach but not moved through it. Then about a half hour later I felt a bit of a tearing/pushing pain and at the 4 hour picture it looked like some pushed through. So with luck, it will show that it wasn't normal.

In the waiting rooms there are signs all over saying food and water are not allowed. Some woman decided that didn't include her and she was right in front of me eating something that looked like cheetos. The nausea hit so hard my head spin and I nearly threw up. I asked her to take it out of the room since it wasn't allowed in there, it was making me sick, and thus it was going to throw off my test. She got angry! Seriously woman, the rules apply to you too! After glaring at me for a half hour she stormed out, probably to eat, then came back and sat in the corner pouting/fuming.

Very long day ahead tomorrow. I have 4 tests I have to do tomorrow (one of which is just a line being placed down my throat for a 24 hour pH test, and will be taken out on Friday). One of them looks to be a type of endoscopy which means I'll be sedated for it. So it will be a tough and exhausting day. Then Friday I get my results and hopefully treatment options. Right now, it's time for bed!

  Member Comments About This Blog Post:

LIVINHEALTHY9 12/8/2011 9:04PM

I hope your upcoming tests go well and you get some treatment answers.

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MOM2ACAT 12/8/2011 6:05PM


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LOLADUVALL 12/8/2011 9:42AM

    Thinking of you today. I hope all goes well and the tests yield the answers you desperately need.

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MANDI99P 12/8/2011 9:14AM

    I hate when people think that the rules don't apply to them. Its good that you said something to her even if she got mad. Good luck on all of your tests. Take it easy and don't get stressed out.


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Feeling a little better today

Tuesday, December 06, 2011

First test is done: lactalose breath test. I'm still pretty tired today, but not as bad as yesterday. Tomorrow is the gastric emptying study. When I had the one at Mayo I ate sparingly beforehand and they said it was 'completely normal'. I've barely been eating for the past month and a half, so the test tomorrow would probably go better than it should. I've been craving a burger for a month, so I decided to get one from down the street for dinner tonight. It went down quickly and didn't cause a lot of problems at first, but after about 2 hours it started causing pain. I've been laying in bed since I finished eating (sitting up really makes the pain worse) and as long as I don't really move I'm doing okay. Hopefully I'll be okay through the night. But it should help slow things down for tomorrow by having something not easily digestable in there about 12 hours before the test.

Early day tomorrow, and it will be a long morning. So I'm going to get ready for bed. Thanks for thinking of me sparkfriends, and for caring and supporting me.

  Member Comments About This Blog Post:

MOM2ACAT 12/7/2011 3:36PM

    Hope you feel better soon, and the the GES will give helpful results.

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ANDREWS_MOM 12/7/2011 2:46PM

    thinking about you & hoping everything is going well.

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NIKI778 12/7/2011 1:00PM

    Hoping your test goes well today and that you are able to get the help you need.

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MANDI99P 12/6/2011 10:38PM

    Stay strong. My thoughts and prayers are with you every day.

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ENNAID2 12/6/2011 9:58PM

  I am sorry that you are feeling not well. I send you sunshine to brighten up your day.


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First appointment

Monday, December 05, 2011

I'm horribly exhausted from today. The initial appointment went well. But after having 8 tubes of blood drawn I was incredibly weak. We got back to the hotel and I dozed a bit. I had to force myself to get up and walk around the halls a little to try to be awake enough that I could make myself have some ensure and water for dinner.

Tests start tomorrow. I'm glad my dad is with me because there is absolutely no way I could've done this alone! My body keeps wanting to give out and I'm at a point where even when I'm fighting it's too hard.

  Member Comments About This Blog Post:

LIVINHEALTHY9 12/6/2011 8:00PM

    Hoping your tests go well tomorrow.
Good to know you didn't have to go by yourself this time.

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MOM2ACAT 12/6/2011 4:24PM

    I'm glad your dad is with you and that your are not alone.
Hope you get a good night of sleep and that the tests go well tomorrow.

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MANDI99P 12/6/2011 9:42AM

    I'm so proud of you that you continue to fight. I know its hard, but you are worth it. I'm praying that you get the help you desirve this time. As always my thoughts are with you. Keep us updated.

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Quick run-down of the past few days

Sunday, December 04, 2011

The past few days have continued to get more and more crazy. There is so much I could tell all of you, but I'm quite exhausted. Instead, here's a quick run-down.

I put in 44 hours of work M-F this week. My boss got upset about her computer not working and I got it taken out on me. Saturday I worked 6.5 hours (had things that needed to be done next week) so that puts me to 50.5 hours worked in 6 days. As I left work yesterday, it was snowing and it ended up being about 4". Still, my mother went with me (too worried to let me go alone) to see Immortals. (TVD fans I posted about it in the team forums.) Luckily, since it is MN, the snow was easily cleared so my flight this morning had no delay. With what it took for me to get from home to the hotel in Philly, it would've been a nightmare if I hadn't had some really nice people helping me out. If a few people hadn't given me a little extra help, I'm not sure how I would've made it - I'm incredibly exhausted as it is. If I have time and energy tomorrow maybe I'll talk about all the nice things people did for me today.

So tomorrow is my first appt with the doctor at Temple. I'm a little nervous, but maybe I found my way to Temple for a reason.

  Member Comments About This Blog Post:

ANDREWS_MOM 12/5/2011 9:42AM

    Hoping your trip and appointments at Temple give you the answers you need. While it is a tiring experience, it was the one & only pllace that was able to help me. I was awed that I was actually taling to people who knew what I was going through & did NOT think I was crazy. They were not shocked by anything I said and it was all stuff they heard a million times before and just the reassurance of what I was going through was REAL gave me the piece of mind I hadn't had in years.
Wiishing the very best for you since you are with the very best (Dr Parkman) for these conditions.

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