Monday, September 26, 2011

Series: Becoming Debt Free...Late 2009-early 2010

Around October of 2009 my symptoms were starting to flare again.  My skin was broke out in a terrible rash and whenever something somewhat abrasive (like drying off with a towel) touched me I would flare up in hives.  I also started wheezing daily and my stomach was hurting again.

Cincinnati Skyline from our hotel room.
An upper G.I. of my stomach showed elevated eosinophils again.  We assumed that the eosinophils were causing the wheezing and hives as well.  The hives wound up being something called Dermagraphism.  After many months of research I found a hospital in Cincinnati, Ohio that specializes in my disease.  In December of 2009 I sent in paperwork and was accepted into the program.

In January, of 2010 Brian and I boarded a jet for Ohio!  It was an adventure, but one that we were glad to take on.  By the end of this adventure I finally had a name for my disease!  I can't even explain the relief I got by just putting a proper name to the thing that had been messing with me for so many years.  We were in Ohio for a few days.  It was an expensive visit, but with help from my in-laws, friends and family we didn't have to come up with extreme amounts out of pocket.  It did, however, put a dent in our budget.

Here's some journal entries from that visit:

Monday, February 8, 2010

My trip to Cincinnati

Well, where to begin??? WARNING...THIS IS TERRIBLY LONG! Although most of our trip revolved around doctor appointments I really enjoyed spending time ALONE with my hubby. It's been way too long since we've had several days alone together. The last time was when we went to get Emalee and before that it had been several years. I sooo wish that we could do this at least once a year, but it's just hard for us to find a sitter for that long. Anyway, I'm looking forward to those days when the kids are grown and we get to do this every day. Of course, when that happens we'll be missing them and want them back!

We arrived Monday evening and didn't really do anything. We walked up the street to a restaurant named Big Boy's (I've never heard of it but it reminds me of a Shoney's) and we had dinner there. We then went to a little gas station and grabbed some bottles of water, a few snacks and called it a day.

Tuesday was my first doctor appt. This was with theGastroenterologist (Dr. "X"). He's supposedly one of the best Gastro's in the world. We were told by several nurses and hospital staff that people from all over the world come to Cincinnati for eosinophilic issues. He wasn't overly friendly, but I felt that he listened well. He basically asked me all my history and symptoms. He then examined me...the usual eye, ear, nose, mouth check. Then he listened to my breathing and my heart beat. That's when he said that he could hear a heart murmur. I told him that I've never been told that I've had one before, so he listened again to make sure. Yep, I have one. What does this mean? I don't know for sure, but I will have an Echocardiogram and an EKG sometime soon here in Springfield to check it out.
Anyway, he went over some of the scopes that I've had here at home and decided that he wanted to go ahead and do a colonoscopy too so then I got scheduled for that and we were done for the day.
We were back to the hotel by 10 a.m. so we decided that we'd better make a day of it and have some fun! We got a taxi and went to the "Back to Genesis Creation Museum"...oh my was it awesome! I would love to go back. It took us 5 hours to go through it and we still weren't done, but we were tired and I had to get back and rest up for Wednesday. The museum starts out at the beginning of Genesis when God created the world and walks you through the main points of Creation, Adam and Eve, Sin, the flood, tower of babel, Christ and his birth, death, resurrection, salvation, etc. It not only gives the Biblical answer behind questions such as evolution, but it also gives the world view. Very cool for Believers, but also very inviting for unbelievers as well. There were life like figures of several Biblical people and then other people in history, like Martin Luther, that were great historical figures of the early church. There was a garden of eden, a serpent, tree of life,noah's ark....these were all big display rooms that you walk through as the story is being told or read. There were dinorsaurs too! If you guys ever get to Cincinnati (it's actually across the border in Kentucky) I would HIGHLY recommend that you go visit. Here's the website
Plaque at the Creation Museum

The Tree of Life

Noah's Ark

We did go to the revolving restaurant in our hotel this night too. It was very cool, very romantic and a bit pricey (that's coming from a coupon lady! LOL!), but worth it just to say we went! I think our dinner was about $65 for both of us which included an appetizer, salad and entree. Here's the website for it. Our room was up on the 13th floor facing the Cincinnati skyline. It was a great view!

Wednesday was an extremely long and tiring day. We arrived at the hospital at 9 a.m. We had a seminar with another family that was all about eosinophilic disorders. I knew almost everything already that was taught, but Brian really didn't know as much so it was really good for him to get educated about it. After the class we were given a tour of the eosinophilic center research lab. There's a whole wing that's strictly devoted to eosinophilic research. One of the leading pathologists in the world heads the department along with 4 other world renowned doctors (2 of them are the Dr's I saw). It looks like a huge science lab. There's tons of freezers, refrigerators, mice and lots and lots of scientist/doctors that are working on different eosinophil assignments. So little is understood, but just in the last 3 years they've made HUGE strides in understanding eosinophilic disorders. In fact, I donated my blood and some extra biopsies to their research center. I figure that whatever I can do to help would be beneficial in the future..if not to me, then to someone else!
After the seminar I had my allergy/immunology visit....First, we met the allergist (Dr. "X"). When he walked in the door I was shocked by how young he was. He's probably 30 years old at the most and already one of the top doctors in his field. I could tell by our conversation that he really knew his eosinophil stuff! He was very friendly, easy to talk to, we could actually joke with him and laughed about was great! We visited for about 60-80 minutes. He took tons of time with us. He asked my whole medical history again, typed it all out himself on his computer too. None of the doctors would say a definite on what they thought was going on because they can't. They all work together as a team, review my information, all my blood work and biopsies and then they have a meeting to discuss what they believe is happening. Just the fact that they all work as a team is so encouraging. My doctors here don't really do that. I have information coming from one doctor that the other doctors aren't even aware of. At this hospital NOTHING is left out. They all get the exact same information. In the rare case that "science" doesn't back anything up they all make an educated guess together. Dr. "X" actually said (his exact words)...."You've been jerked around by other doctors way too long. We'll do our best to get to the bottom of this." Now that, my friends, was encouraging : )
I had a complete skin allergy test that showed NO food allergies. I only reacted to ragweed. This is good because we now know that food is not the culprit. The bad thing is that we don't know what the culprit is.
I also had a lung function test and passed with with flying colors. I'm not really sure how my wheezing plays into all of this? The Dr. wasn't sure either other than my "asthma" must be well controlled now. All I know is that I'm still short of breath, not wheezing though. After that I gave lots and lots of blood. I'm pretty sure that they took 9 vilesand then one more because she forgot one and I had to be re-stuck! Ouch! That was the one for the research lab and I really wanted to do that so I took the extra poke anyway : /
By the time we got back to the hotel it was 6 p.m. and I still had to prep for my colonoscopy. :(

We were at the hospital early on Thursday. I had to be there at 6:30 a.m. I was the first patient to be seen. I don't remember much other than the nurses were exceptionally nice. I was actually looking forward to getting some sleep! I had my upper endoscopy and colonoscopy back to back. I had to stop eating by late Tuesday night. All I could have was clear fluids. Because Wednesday was such a long day w/o many breaks I didn't get as hydrated as I should have, plus I had quite a bit of blood taken too. After I woke up I could tell that I wasn't feeling right. I thought it was just the anesthesia, but I now know that I was dehydrated. Right when we were about to leave I about fainted. They had to put me back in a bed and gave me another bag of fluids. Our driver was already there. I felt so bad because he had to turn around and leave only to come back later. Fortunately, our hotel has a partnership with the hospital for free shuttle transportation or we would have been out a big taxi fee! Still, I felt bad that he had wasted his time. Once we got back to the hotel I just slept. I think I slept until 6p.m.?? Anyway, when I woke up enough Brian walked to Subway down the street and got some dinner for himself. He got me some too, but I just didn't feel like eating. I drank A LOT though and still found myself overly thirsty the next day.
Friday was just travel. We slept in and left around 10:30 for the airport. Our flight was a bit delayed due to a pressure valve issue. Then in Memphis our flight was delayed again for just a bit. We got all the way to our gate in Memphis and then they changed the gate! I hate it when that happens! Our new gate was on the complete opposite side of the airport.  I was really tired by the time we trekked to the other side of the airport!

We were glad to see the kids. Emalee wasn't so sure about us coming home. She doesn't adjust well to change so it took her a bit to adjust, but after that she was fine.
I won't know anything for 2-3 weeks. I'll let you all know as soon as they call me. For those of you that prayed for me I really appreciate it.

Journal entry from the following day:
The phone rang this morning and to my surprise it was Dr. "X" from Cincinnati Hospital. He had the lab results from all my blood work and gave me the results. They tested me for EVERYTHING that one could ever been tested for....all cancers, HIV, leukaemia's, autoimmune disorders, allergies, parasites...everything turned out negative. That was good news. With all of those tests and looking at my past medical history it was concluded that I have Hypereosinophilic Syndrome (HES). This is what I thought I had. I'm not a bit surprised.  It comes with its own problems, but at least we now have a name for what I have.

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