***Update: As of September, 2012, my doctor's aren't sure that I have HES and think that I have something else. So, I've changed the title of this page to EGID'S instead of the former HES to better reflect the disease that I have. I'm still in the process of being diagnosed, and until I get a new diagnosis I won't say exactly what they think I have yet, but it's in the EGID family. So, here's link where you can read more about EGID'S:
http://www.apfed.org/drupal/drupal/what_are_egids
http://emedicine.medscape.com/article/174100-overview
I have a very rare disorder called Hypereosinophilic Syndrome. I include my story here (on my coupon blog) not only to educate my readers, but it's also here so that I have a place to record my symptoms, treatments and resources I've found. Some of you have also asked for me to keep you updated on my progress so I'll update as necessary to keep you informed.
RESOURCES: American Partnership For Eosinophilic Disorders APFED (more info. on EOSrelated disorders)
Cincinnati Center For Eosinophilic Disorders (hospital in Cincinnati where I was diagnosed)
http://www.med.ucla.edu/modules/wfsection/article.php?articleid=295
http://en.wikipedia.org/wiki/Eosinophilic_gastroenteritis
My Story....
Hypereosino-what??? Unfortunately, I've had to add this word to my regular vocabulary. I knew something wasn't right in the Spring of 1995. My first child was only 6 months old and I just couldn't tolerate food. I liked it, but it sure didn't seem to like me. Everything I ate sent me to the bathroom. Unfortunately, my disorder is about things we don't normally talk about with other people, such as diarrhea and vomiting, but for me and my family it's every day language now. So, yes, I was having several bouts of diarrhea every single day. I couldn't gain weight, in fact, I was losing it. In the Summer of 1995 I only weighed 95 pounds and all I could tolerate eating was potatoes and rice.
Time passed and I seemed to be getting better. I started gaining some weight back and wasn't in the bathroom as much, but that was short lived. I went through a time in the early 2000's where I would just get sick, felt nauseated, sometimes vomit and have chronic diarrhea for no apparent reason. My stomach felt horrible all the time. There were days that I could hardly take care of my kids (two children now). There were days that I literally was in the bathroom for hours.
I went to several doctors that just didn't seem to know what to do with me. It was very frustrating for me because I didn't feel like I was getting help. I knew something wasn't right, but I'm not a doctor, I didn't know what it was.
In 2001 I started developing a rash on my arm. It looked a bit like eczema. The rash over the next four years got worse and spread to other parts of my body including my face. My dermatologist saw my rash on my face for the first time in the summer of 2004. He was very concerned and thought I might have lupus. He had some blood drawn and ran some tests. He knew something was wrong when my white blood count came back incredibly high. He guessed that I had Leukemia. I started seeing a Hemotologist right away.
In the mean time, my stomach was acting up again. I had horrible pain. It was advised that I have an Upper GI. This test showed that I had a large stomach ulcer. The GI doctor biopsied it and found high counts of Eosinophils (part of the white blood cells) in my stomach tissue. He guessed that I had something called Hypereosinophilic Gastroenteritis. This was partly true, but there were more symptoms that were confusing such as the skin rash, itching, the high white blood count.
Finally, after 5+ years of seeing a Hemotologist, Dermatologist, Gastroenterologist and an Allergist, I was sent to Ohio to The Cincinnati Center for Eosinophilic Disorders (CCED) in February of 2010. I got a diagnosis of Hypereosinophilic Syndrome with Gastrointestinal Involvement.
The following blog entries tell the rest of my story...unfortunately, it's an on-going story that hasn't ended yet, but I'm hopeful for a cure.
MY STORY CONTINUED:
Sept. 18, 2009:
This past Wednesday I went and had another Gastroscopy. It's been determined that I have another stomach ulcer. I've been having a lot of stomach pain and have lived with ulcers for so long now that I already knew that they would find one with the scope. The ulcer, along with some of my stomach tissue was biopsied and sent off to the lab. I'm still waiting for the lab readings.
The good thing that I really want to give a praise for is that for the first time since I've been seeing my Gastroenterologist I truly feel that he is listening to me and wants to help me. He's doing some research on my disorder which I hope helps him and my Hemotologist understand how to better treat my condition and symptoms. I've been specifically praying that my doctors would do more research on EGE and it looks like that prayer is being answered.
EGE is an extremely rare condition. From the research that I've done it seems that there are only 400-600 diagnosed cases WORLD WIDE!!! No wonder research is difficult to do, huh?!?! I suppose the Lord wanted me to be unique for some reason I don't quite understand yet, but if I happen to be the guinea pig that leads to helping others that have EGE feel better than so be it!
Here's some websites that have good info. on Hyereosinophilic disorders:
http://www.apfed.org/
http://www.med.ucla.edu/modules/wfsection/article.php?articleid=295
http://en.wikipedia.org/wiki/Eosinophilic_gastroenteritis
http://www.med.ucla.edu/modules/wfsection/article.php?articleid=295
http://en.wikipedia.org/wiki/Eosinophilic_gastroenteritis
November 1, 2009
My plate is quite full this week. I have a lot of things going on...so much that I had to write a list so I don't forget anything this week. Speech therapy, Early childhood appointment, bunco, birthday party, another birthday party (both for my children) and basketball tryouts to name a few. Whew...it's gonna be a busy week!
Probably the most major thing is that I go to St. Louis this week to see a new doctor about my autoimmune disorder. I admit that I'm feeling a bit uneasy/anxious about this visit, however, I know that it has to be done. Brian and I will drive up there Wednesday night and spend the night. My appt. is early Thursday morning. I'm not sure what to expect at all and I REALLY like to know what to expect. At this point I just have to trust that the Lord knows...and it's okay!
If you read this blog (I have no idea who actually does), then would you please pray for me? Pray that the Lord would calm my nerves, that my new doctor would understand my disorder, and that I would finally get some kind of treatment that helps. Pray that Brian and I would have wisdom in making decisions that might need to be made too. Thanks!
"You are my hiding place and my shield; I hope in Your word." Psalm 119:114
The two entries below were originally written on my Facebook notes page. I've just coped and pasted them here.
November 3, 2010 Hello friends! As many of you know, I have a Dr. appointment this Thursday morning at St. Louis University Hospital regarding my autoimmune disorder (Hypereosinophilic Gastroenteritis). I must admit that I'm just a bit nervous and apprehensive about going. At the same time I'm excited that I get a second opinion about treatment for my disorder. Those of you that are in my immediate circle of friends know that my disorder is EXTREMELY rare and there is very little study on it. I am asking for you to pray that this new doctor that I see actually knows something and has experience in this area. If after this appointment I feel like he doesn't know how to treat me I have already sought out another option but it would require me to go to Cinncinatti for a 3 day stay. The good thing about Cinncinatti is that they are the BEST place to go in the entire world for my disorder. I am sending this note asking you all to pray for me. I really don't know exactly how to express exactly what I need prayer for...there are so many factors that play into this! Here are a few of the requests that I have: 1. Pray that the doctor is St. Louis has experience in dealing with my disorder and knows proper means of treatment. If not, that he would be willing to refer me to Cinncinatti. 2. Pray that if I'm not properly diagnosed already, that I would be properly diagnosed. There are many tangents in this disorder that require different means of treatment. 3. Pray that whatever course of treatment is prescribed that I would be willing to handle it! This is sometimes difficult physically as well as emotionally. 4. Pray that I would remember that the Lord has me on this path for a reason and to be grateful for it. 5. Pray for Brian. He's a great husband and I'm sure this is worrying him too. Thank you so much for your prayers. I will keep you posted on what happens when I get back! In Christs love, ~Heather
November 6, 2010 A few of you have asked how my Dr. appointment went. I'm going to be honest when I say that I was not happy with the appointment. Without going into too much detail Brian and I both felt that this doctor wasn't knowledgeable about my disorder. He has seen only 3 other patients before that have EGE. We could tell by some of the things that he proposed that he really is inexperienced in dealing with this particular disorder. So, I decided to call my doctor (Dr. Grant) here in Springfield. She is out of town but her nurse spoke with me today. I told her of my disappointment and concerns. I also shared with her that I would like a referral to a specific doctor that DOES deal with EGE in Cincinnati and that I most likely won't see the St. Louis doctor again. Dr. Grant will be back in the office Monday and probably call me then. The nurse seemed rather postive when I brought up the Cincinnati topic and stated that she thought Dr. Grant would consider the referral.Would you all PLEASE lift this up in prayer? This is where Brian and I both feel that I would get the best treatment. This is where people all over the world go for treatment of EGE and the only place in the world that is actively researching EGE. I already contacted them and they are willing to review my records with a referral. I really don't know where else I could get the proper help that I need. I'm having a hard time swallowing some of this today so please continue to pray for me too that I would rest in the Lord and completely trust in Him. I really do want to "consider it all joy."~Heather
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. Kushner). 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, 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 www.creationmuseum.org/
We did go to the revolving restaurant in our hotel this night too. It was very cool, very romantic and a bit pricey (okay, but that's coming from a "couponer" point of view..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.http://www.radisson.com/covingtonky 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 differenteosinophil assignments. So little is understood, but just in the last 3 years they've made HUGE strides in understanding eosinophil 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. von Tiehl). 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 things...it 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. von Tiehl 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 probably not the culprit. The bad thing is that we don't know what the culprit is now. It could still be a food that I wasn't tested for or environmental allergies..etc. THIS is the mystery behind HES!
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 viles and 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. Needless to say, the rest of the evening was spent on the potty. I felt sorry for my hotel neighbors because I was flushing the toilet all night! The last time I remember getting up it was 3:30 a.m.
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 about $60! 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 worn out by then!
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.
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. Kushner). 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, 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 www.creationmuseum.org/
We did go to the revolving restaurant in our hotel this night too. It was very cool, very romantic and a bit pricey (okay, but that's coming from a "couponer" point of view..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.http://www.radisson.com/covingtonky 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 differenteosinophil assignments. So little is understood, but just in the last 3 years they've made HUGE strides in understanding eosinophil 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. von Tiehl). 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 things...it 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. von Tiehl 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 probably not the culprit. The bad thing is that we don't know what the culprit is now. It could still be a food that I wasn't tested for or environmental allergies..etc. THIS is the mystery behind HES!
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 viles and 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. Needless to say, the rest of the evening was spent on the potty. I felt sorry for my hotel neighbors because I was flushing the toilet all night! The last time I remember getting up it was 3:30 a.m.
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 about $60! 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 worn out by then!
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.
February 9, 2010
Hypereosinophilic Syndrome
The phone rang this morning and to my surprise it was Dr. von Tiehl 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.
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.
This is an EXTREMELY rare disorder. Roughly 1 in every 200,000 people have HES. That's about 150 people in the entire United States of America! It is not curable, but there are treatment options. Things are still being learned about this disorder and treatments are still being researched. It's hard to explain the disorder so if you'd like to learn more you can go these websites...
orhttp://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/about/default.htm
As far as my treatment goes I won't know what we'll do for a few more weeks. We're waiting on some test results to get in before we decide the best treatment plan. I'll also have an EKG and an Echo cardiogram on Feb. 23rd to determine if any heart damage has been done and the extent of that damage. Treatment all hinders on these results along with the biopies of my GI tract that were done in Cincinnati. In a few weeks I'll update my blog and let you know what treatment options we decide.
As far as my treatment goes I won't know what we'll do for a few more weeks. We're waiting on some test results to get in before we decide the best treatment plan. I'll also have an EKG and an Echo cardiogram on Feb. 23rd to determine if any heart damage has been done and the extent of that damage. Treatment all hinders on these results along with the biopies of my GI tract that were done in Cincinnati. In a few weeks I'll update my blog and let you know what treatment options we decide.
March 4, 2010
I heard from two of the doctors in Cincinnati today. There are four doctors working on my case. All four of them have agreed that I do have Hypereosinophilic Syndrome (HES). The biopsies of my upper and lower GI's have shown significant infiltrations of eosinophilis in my stomach, esophagas and intestines. The colon was fine. There was evidence of ulcers and inflammation caused by the eosinophils in all those areas as well.
My heart looks great! I do have a minor heart murmur, but they don't think my disorder has caused this so that is a HUGE praise!
I'm still continuing to wheeze and have shortness of breath. One doctor thinks this could be caused by inflammation in my esophagas, the other doctor thinks that it's reactive airway caused by the eosinophils in my lungs (this is what I think too). The only way to know for sure is to do a lung biopsy and I don't think we'll be doing that.
So, what does all this mean? What course of treament will I take?
I'll try to summerize what I've been told and add today's update to that....
HES is as close to Leukemia as you can get. There are 3 types of HES. I will have one more blood test to determine what type I have. I'll have the blood drawn here and then sent to a lab that specializes in looking at chromosones/genes/cells. There are different treatments for each type. I'll have some kind of chemotherapy for treatment (most likely Hydrea or Gleevac). I will stress that HES is NOT curable. It does NOT go into remission. I will ALWAYS have to take some form of medicine (chemo's and steroids) for the rest of my earthly life (that is if the Lord chooses to not heal me). I'll start treatment as soon as the blood test determines the type that I have...those results will take another 2-4 weeks.
They're also trying to decide what to do about my wheezing. Right now I'm on inhalers for that. I should know more on that in a few weeks too.
In the meantime, my doctor wants me weaned completely off of the prednisone that I've been on for 5 years! Yay! I can't tell you all how happy that makes me! : )
Well, that's it. When I find out more in a few weeks I'll be sure to let you all know.
Thanks so much for keeping me and Brian lifted up in prayer. I was really stressed about this a few weeks ago, but the Lord has washed me in His peace and I'm so thankful for that!
March 31, 2010My heart looks great! I do have a minor heart murmur, but they don't think my disorder has caused this so that is a HUGE praise!
I'm still continuing to wheeze and have shortness of breath. One doctor thinks this could be caused by inflammation in my esophagas, the other doctor thinks that it's reactive airway caused by the eosinophils in my lungs (this is what I think too). The only way to know for sure is to do a lung biopsy and I don't think we'll be doing that.
So, what does all this mean? What course of treament will I take?
I'll try to summerize what I've been told and add today's update to that....
HES is as close to Leukemia as you can get. There are 3 types of HES. I will have one more blood test to determine what type I have. I'll have the blood drawn here and then sent to a lab that specializes in looking at chromosones/genes/cells. There are different treatments for each type. I'll have some kind of chemotherapy for treatment (most likely Hydrea or Gleevac). I will stress that HES is NOT curable. It does NOT go into remission. I will ALWAYS have to take some form of medicine (chemo's and steroids) for the rest of my earthly life (that is if the Lord chooses to not heal me). I'll start treatment as soon as the blood test determines the type that I have...those results will take another 2-4 weeks.
They're also trying to decide what to do about my wheezing. Right now I'm on inhalers for that. I should know more on that in a few weeks too.
In the meantime, my doctor wants me weaned completely off of the prednisone that I've been on for 5 years! Yay! I can't tell you all how happy that makes me! : )
Well, that's it. When I find out more in a few weeks I'll be sure to let you all know.
Thanks so much for keeping me and Brian lifted up in prayer. I was really stressed about this a few weeks ago, but the Lord has washed me in His peace and I'm so thankful for that!
I-HES (Idiopathic Hypereosinophilic Syndrome)
Finally...my blood test results are back and now we know what kindof HES I have. It's I-HES, aka, Idiopathic Hypereosinophilic Syndrome. There's too much involved in explaining it, but I found a link that does a pretty good job.http://www.orpha.net/data/patho/GB/uk-IdiopHypereosinophSyndr.pdf
The results of this test were to determine what course of treatment (medicines) I should be taking. I will be taking a chemo called Hydrea and will start in a couple of months....or whenever I'm completely wheened off the prednisone. I'll update my blog when I start.
I've heard pretty good things about Hydrea as far as tolerance of it goes, so I hope that I'm one of those that tolerate it well.
The results of this test were to determine what course of treatment (medicines) I should be taking. I will be taking a chemo called Hydrea and will start in a couple of months....or whenever I'm completely wheened off the prednisone. I'll update my blog when I start.
I've heard pretty good things about Hydrea as far as tolerance of it goes, so I hope that I'm one of those that tolerate it well.
April 2, 2010
Hydrea
Shazam! Things have moved a bit faster than I was previously told. My doctor called yesterday and decided to have me go ahead and start my chemo. So, I just took the first pill of Hydrea (Hydroxyurea). I'll take one every day. According to what I've been told I will be on this the rest of my life since HES doesn't go into remission and isn't curable. I'm still being weaned off the prednisone. I'm hoping that this doesn't make me sick. I'm sure that only time will tell.
June 4, 2010
HES update
I went to the doctor again this week. My blood count looks good, but I'm still having significant tissue/organ damage (skin and stomach), so my chemo has been increased again. Now I'm on 1500 mg. per day of Hydrea. I also had an x-ray because of some back pain. My doctor wants to see my bones to see if they are okay since I've been on prednisone for over 5 years. I'll hear back sometime next week to see what, if anything, they find.
July 1, 2010
I attempted to apply for SS Disability and learned yesterday that I don't qualify. I knew that I wouldn't qualify for SSD because I've been a SAHM for most of the past 15 years and don't have enough work credits in. However, I thought I might qualify for SSI. Unfortunately, my husband makes too much money and that puts us over the income bracket for SSI. The gentleman that I spoke with did say that my HES would qualify me otherwise. Medical expenses aren't figured into the equation either. I was told that I need to work four years to get all the work credits in to qualify for SSD. I'm not sure what I'll do, what I can do, or what the Lord wants me to do...BUT, I do know one thing...
"My God shall supply all my needs according to His glorious riches in Jesus Christ!" Phil. 4:19
In other news, I found out that nothing is wrong with my back/upper leg bones. That is a huge praise since the medicine that I've been on can cause bone loss. The doctor that I saw told me that people that have autoimmune disorder sometimes have pain in the exact location that I'm having it. He said it's probably just inflammation and there's nothing they can do for that other than give me steroid shots directly into it. I could take anti-inflammatory meds, but with my disorder I can't take those or they'll cause more damage to my stomach. I opted not to get the shot for now, but can go get one anytime I need it.
July 6, 2010
I had another appt. with my Hemotologist today. My blood counts are off a little bit. She said that we'd wait another month and check them again then. I'm really not sure what she meant. I do know that my Red count was extrememly low and my white count is apparantly not what she'd like it to be. I wish I was a doctor so I had more understanding...or do I? At least I know that the Great Physician is my Father. :)
July 20, 2010
My eosinophil count is 100!!! Normal is 100-300 and mine has previously been as high as 6000 before so this is a HUGE praise! This is the lowest that my count has been in 3 years! I'm currently being weaned off my steroid meds and should be steroid free in less than one month if all stays as is. This is wonderful since the side affects of the steroids aren't very pretty. I will stay on the chemo indefinitely and I'm okay with that since it seems to be a good treatment that is working. The side effects I have from it aren't that bad...just a little bit of nausea, some loss of appetite and energy, but I'm hoping that will also level out some.
Thanks so much to those of you that have kept me lifted up in prayer. It has been a very humbling thing. I'm starting to feel much better and can only give my Lord the glory for that! This has been one of the biggest trials of my life, but I have been able to lean on Jesus in ways that I never did before. I've learned to appreciate the little things and not sweat the small stuff...but, most of all, I have a renewed urgency to serve my Lord, share His love and soak in His Truth. Going through this kind of trial has really reminded me of how short and fragile life is. The Bible verse that I've leaned on during this time has been James 1:2-4 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." Am I mature and complete yet? No, not even close... but I have been able to come to a place where I can consider this journey that I'm on as a "joyous" one because I know that I'm exactly where He wants me to be so that He can accomplish His greater purpose! That, my friends, puts a smile on my face! :)
Thanks again for your continued prayers.
Jan. 18, 2011
I haven't updated this year. The big news...I got a new Hematologist. The one that I've had since 2004 has retired. I was frustrated that I had to change doctors, but after my first visit my new one I'm very pleased. She seemed to listen to me well, and appeared to be knowledgeable in HES. That a HUGE praise since this is such a rare disease.
Unfortunately, my eosinophil counts have climbed up again, so my chemo was increased. I'll go back in about a month to see what the new counts are. Also, my new doctor is researching to see if there's anything to do about my skin. Everything else seems to be about the same for now.
April 8, 2011
The chemo that I'm currently on (Hydroxyurea) is causing my blood counts to go too low and now I'm anemic. My doctor lowered my chemo last month in an attempt to help this. I had a CBC yesterday but the counts were still low (actually lower than last month). We've decided to stay on the current level of of chemo and check again in 2 months to see what's happening. I feel good, have enough energy to get things done that need done so I'm not overly concerned. I'll just watch my diet and make sure that I get more iron in me! My skin rash seems to be calming down a bit (probably due to the chemo) and that's a good thing. I'm not so itchy and raw. There's a possibility that I could go on Humira to help the skin, but we're holding off on that unless it gets worse.
