So I forgot to hit post yesterday to part two which I had written. Oops. So now you'll get two posts in one day!
I realize my little soap box at the end of the last post is somewhat of a hypocritical philosophy. Here I am telling other people to do something I didn't at first. But, let's face it, life can sometimes be a "do as I say, not as I do" series of events. So basically what I am saying is I've *sorta* learned my lesson and now you should all be smarter and wiser and learn from my mistakes. (This does make me sound all philosophical and self-reflecting right?? lol.)
My two previous posts have brought us current to early August 2008. I notice my reflux is getting worse, but I just assume it is stress related. Josh and I were buying our first house, there was a lot going on at work, my grandmother was not doing well health wise, etc. By early September we were getting settled into our new house (note, if you click on this link it is far from complete. I start these fun projects like webpages and just fall off the bandwagon. With my upcoming couch time post-op I will TRY to get that thing up to speed.), I was let go from my job (which I somewhat was relieved about), and Meme was doing better. So less stress and I should be feeling better right? Wrong.
Off to see my favorite doctor again! I meet with SK the end of October and she sends me for blood work, a six hour glucose fast and another EGD. I get my blood work done first and get a phone call from a nurse at my doctor's office to call her back immediately. I worry this has something to do with my glucose fast. When I do call we have the following conversation:
me: hi, this is mj returning your phone call about my blood work.
her: oh yes, I have a prescription here from Dr. L for Lipitor that you need to begin taking immediately.
me: okay, ummm, actually SK and I spoke about this prior when Dr. L tried to put me on this before and we decided this was not appropriate for me because I am still of child-bearing age and I am not comfortable taking this.
her: *sigh* fine.
me: I see SK next week and will discuss this with her then.
her: *sigh* fine.
me: What were my glucose results?
her: *sigh* You can discuss them with SK next week. **click**
Awesome and helpful. Normally this nurse is much nicer, so I just chalked it up to a bad day and awaited my appointment. I also go in for my EGD which I've already covered in this post.
When I meet with SK again we discuss my blood work. My glucose if fine (whew), all my other numbers look good but... ummm... she wants me to know how special I am. Well *blush* thank you, I know. She then tells me my cholesterol is the highest she's EVER seen on anyone. She highlights the number, puts a star next to it and makes me a copy for my fridge. *sigh* Stupid genetics! She puts me on some much safer cholesterol lowering medication.
Now this new medication, Welchol, is take as 6 large pills every day. It is not harmful for young women though and is in a much safer class than most of the cholesterol lowering medications on the market. This is important to me. I appreciate that SK is willing to listen to my concerns and research other products to meet me needs. I really really *pph* her.
We move on to my EGD results and she tells me basically what the doctor did, but tells me she really thinks I should consider surgery to correct this problem as I am highly medicated and it isn't working. She agrees with the recommended surgeon the doctor suggested and I decide I will meet with him in two days time. She wishes me luck and tells me to call her if I need anything.
Friday November 21 I meet with Dr. Evans. Josh comes with me as I'm kind of nervous to be taking this next step. He is very nice and we go over my EGD results and he discusses with me the procedure he does to correct acid reflux. This was called a nissan fundoplication. He draws some pictures, discusses the procedure, and explains he would like for me to have 3 more tests done before scheduling the surgery. If you've been following this blog you will know this is not what I am having done.
Monday November 24 he has me scheduled for an upper GI. This was nothing! I had to take some fizzy drink (he scheduled it for an air contrast) that made my belly bloat up and then I had to swallow this thick chalky stuff and do all this crazy moving around to get all the pictures. At one point the tech helping with the upper GI laughed at me because my boob kept falling out of the gown and I said I felt like I was on a photo shoot with all the posing and ill fitting clothes. You have to keep the mood light when slightly uncomfortable and partially naked!
I took a testing break to take a little trip home for Thanksgiving, but was back the Monday after for another doctor appointment for an unrelated issue (this issue would be my breast reduction *squeee* but I'll talk about that another time!). The day after that, Tuesday, December 2, I had to head to Harrisburg to get the worst test in the history of the world done.
Okay, well maybe not the WORST, but the worst one I've ever done. This is actually two tests and are done back to back. This website, although from a parent's standpoint of having it done to their child, is very good at explaining what I may not be able to do, but I'll still give it a try. The first part is a motility test. This was awful. I don't even know if I can describe it other than first a large amount of cold, burning goo was pushed into my nose to help numb it. Then a tube that is about the diameter of a pencil is pushed through the nose and into the esophagus. This does not feel good. You are told not to swallow (which of course you can't help doing) and then you must take sips of water as the thing is pushed and pulled up and down and... *cringe* it hurts just thinking about this.
I had tears streaming down my face the whole time and I kept apologizing for swallowing. When she was done she prepped a much smaller tube that is attached to a recording device. This was placed up my nose and down my throat, and put in place. My face was then taped up to help the tube at the bottom of my esophagus stay put to monitor my PH. The lady doing all this told me I was actually a very good patient, but I still felt awful for the loads of tears and not being able to do exactly what she said.
Here are some pictures of me with the PH monitoring. I had to wear it for 24 hours. Swallowing food was a nightmare because it pulled on the tubing causing pain in my nose and me throat. BUT, I had to eat to make the test work.
If you look closely, the white wire at the back of my mouth/throat is the monitoring tubing. Ugh. I did crop the picture though so you didn't have to be too familiar with my nose hair. See? I am being nice.
Here I am with the tubing running across my face. It tucked behind my ear and ran down to a little recorder thingy. Sleeping that night was also a nightmare because I move around a lot and it kept pulling the tubing. *gag* When I went back the next morning it took all of two seconds to pull out the tubing and send me on my way. It was absolute HEAVEN having that thing pulled out.
December 12th (a little over a week after my testing), my mom came down and went with me to have my follow up with Dr. Evans. We get in there and when Dr. Evans comes in I'm excited and ready to hear when we can schedule this surgery. My good mood is absolutely crushed. He explains that I have several complications that became apparent during the testing and he is not comfortable performing the surgery. Honestly, I got really teary eyed and started to have a melt down. Thank goodness my mom was there and kept me in check.
Basically my esophagus does not perform peristalsis like it should which means if I had the procedure Dr. Evans knew how to do, I would not be able to push food, liquid, etc. from my esophagus to my stomach. That's bad. To further complicate issues I have esophageal muscle weakness. So in other words not only does it not do what it is supposed to, it doesn't have enough muscle to do it correctly even if it was doing what it should. He goes on to explain to me the type of procedure I need, but that he isn't sure if anyone in York does it. He left the room to make some phone calls to local surgeons. When he came back, no one was available for him to talk to, but he told me he would continue to call around until he found someone willing to do the procedure. He said he might have to send me to Hershey or Hopkins. *whimper* WHY can't this just be easy.
I thank him for everything and leave completely dejected. On the plus side all of this confirms that neither diet, medication, etc. could have kept this from happening. This is all genetic and completely out of my control. My mom tries to make me feel better about it, and that there is a solution, but I am just not listening. This is frustrating. Very frustrating.
Christmas was coming, and I still did not have an answer. Let's just say that my Christmas spirit was somewhat dashed this past year and I was feeling very hopeless.
I've added a fun link to the side from the dummies.com website. It talks about evaluating your esophagus and gives a great explanation to some of the tests I went through. Enjoy that and I'll go on the next leg of my adventure later.
*hugs and kisses*
mj
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