Laurelle's Mayo Clinic Journey
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My name is Laurelle Downey and I am the mommy to my two beautiful daughters, Brooklynn and Kassidy, and the wife of my loving husband, Marshall.
My story begins in May 2005 when began to feel pain in my chest every time I ate or drank something. It felt as though it was stuck in the middle of my chest. Then I would feel as though I needed to vomit, which would have me running to the bathroom or outside only to dryheave and feeling so much pain and pressure.
In September 2005, after several trips to my family doctor and medication that didn't work, my doctor refered to a Gastroenterologist at the Royal Alex. After meeting with the Specialist, he sent me for various tests and met with me again with a diagnosis, Achalasia.
Achalasia is a rare disorder that makes it difficult for food and liquid to pass into your stomach. Achalasia occurs when the food tube (esophagus) loses the ability to squeeze food down, and the muscular valve between the esophagus and stomach doesn't fully relax.
The reason for these problems is damage to the nerves in the esophagus, which may be caused by an abnormal immune system response. There's no cure, however there are a few treatments to assist in managing the symptons such as Botox injections, ballon dialation or surgery.
Patients in whom surgery fails may be treated with an endoscopic dilatation first. If this fails, a second operation can be attempted once the cause of failure has been identified with imaging studies. Esophagectomy is the last resort.
In December 2005, after losing 40 pounds in three months due to being unable to eat, I went for surgery. IT WORKED!!! I could eat again. I didn't feel the food getting stuck anymore and no more pain and pressure!!! I figured I had it beat.
During my first pregnancy in February 2009, I began to feel the same symptons again. I immediatley called my surgeon and he got me in for a Gastroscopy and seen that the Achalasia was back and it moved up my esophagus. But because of the pregnancy he could not operate but was able to inject Botox into my esophagus to paralyze the nerve endings and get me thru the pregnancy. In May, my baby was born and my symptoms started to show up again. (Botox can last up to six months in some people and it is needed again.) I decided I could tuff it out and went back to the operating table in December 2009. IT WORKED!!!! I could eat again. I didn't feel the food getting stuck anymore and no more pain and pressure!!! I figured I had it beat, again!! There was no way it could come back this time.............so I thought.
It May 2, 2014 I was driving home from work then, bang!!! I thought I was having a heart attack. Pain radiating from the middle to my chest into my left arm. My jaw hurt and I began to sweat. I made it home and called the ambulance right away. When they got to my house I was still in pain and they gave me two sprays of Nitroglycerin and two baby Asprin and loaded me into the ambulance. Once I got to the hospital they began running tests for a heart attack. All tests came back negative. The kept me in over night and had me see a cardiologist the next morning where I went for a stress test and an ultrasound of my heart. All tests were normal. The only conculsion was it had to be my esophagus spasming.
The symptoms of Esophageal Spasms are the same as a heart attack. So back I went to my Surgeon in October 2014, who refered me back to my GI specialist. My specialist determined that I was at End Stage Achalasia. I asked him, what that was and he said that my esophagus would need to come out and that was the only option to stop the pain, pressure and trips to emergency.
In January 2015, I went back to my surgeon where I asked him to go in again and see it he could perform the same surgery had had done in the past, he agreed. The spasms continued leading me to take a medical leave of absence from work. The spasms began to intensify and would always require a trip to emergency.
My specialist did another Botox injection on me and it lasted 5 weeks. Right after that the spasms were back in full force.
The best way to describe the pain is that of a strong labour contract with a heart attack and a charlie horse right smack in the middle of my chest.
I was hospitalized this past August because the pain was steady and unrelentless. Just in the month of August alone, I made 12 trips to emergency. Taking a Tylenol or Advil won't stop this pain. I need strong pain meds in order to find some type of relief.
On August 27, I went in for surgery at the Royal Alex to have the surgery repeated. I went to sleep and woke up very sore thinking that the spasms were behind me. The next day, the doctor came in to see me. She pulled up a chair and informed me that they were unable to repair my esophagus as the walls were to weak and if they were to have cut anywhere on the esophagus, it would have ruptured and it would have been life threatening. She informed me that they would need to remove my esophagus. I was devestated.
On September 2/15 I was at the surgeon's office getting the staples removed and bang!!! Spasms started in his office. He immediately called my specialist who happened to be doing an edoscopy clinic done the hall who said bring her on over and let do Botox. I was so happy!! Relief in site. Unfortunately the Botox lasted a mere 6 days.
This past year has taken a toll on my husband and my children. My children get very scared when I have an episode and I don't blame them because I am in tears and literally on the floor in pain and cannot do anything to stop it but go to the hospital. As of today's date September 30, I have been in emergency at least 50 times since May 2, 2014.
I have since gone to see both my surgeon and specialist and they are both in agreement that my esophagus need to come out. I am their "Special" case. Neither one of them have ever dealt with a case of Achalasia such as mine and are unable to discuss treatment with any other doctors in Canada because I am the only case that they are aware of.
Because I am "Special" in that aspect, I hace reached out to the Mayo Clinic in Rochester, Minnesota. They have a team of specialist that deal with Achalasia. My hopes are that they can see me and come up with an alternative game plan instead of removing my esophagus.
I have touched base with them and have gotten a rough estimate of costs and I almost had a real heart attack. Just for the first appointment, which includes a specialist looking at my case file prior to the appointment, is $7000 U.S. The average cost for an international patient visiting the Mayo Clinic in Rochester, Minnesota is $13,000 to $15,000 U.S. for diagnostics. This rough estimate does not include treatments or surgery, if needed.
I have recently met with a Thorasic Surgeon in Edmonton at the Royal Alex and he is able to preform a Thorasic Heller Myotomy on Nov. 18. This will give me at year of spasm free living until my esophagus need to come out.
My quality of life sucks right now. I am in constant pain from the spasms and seeing the hurt and concern in my family's eyes. I have been in emergency more than 50 times with this pain. I can't plan for anything because I never know when a spasm will happen. I am hoping that the Mayo Clinic can do something for me other than the removal.
I am a proud person and don't like to ask for help but I really need it now. I am trying to raise $75,000 to cover the costs for the Mayo Clinic and to get my family and I over there. I have taken into consideration the exchange rate and that our dollar isn't the greatest right now.
Any amount would be greatly appreciated and I would keep you in my prayers. Thank you for reading my story.
My story begins in May 2005 when began to feel pain in my chest every time I ate or drank something. It felt as though it was stuck in the middle of my chest. Then I would feel as though I needed to vomit, which would have me running to the bathroom or outside only to dryheave and feeling so much pain and pressure.
In September 2005, after several trips to my family doctor and medication that didn't work, my doctor refered to a Gastroenterologist at the Royal Alex. After meeting with the Specialist, he sent me for various tests and met with me again with a diagnosis, Achalasia.
Achalasia is a rare disorder that makes it difficult for food and liquid to pass into your stomach. Achalasia occurs when the food tube (esophagus) loses the ability to squeeze food down, and the muscular valve between the esophagus and stomach doesn't fully relax.
The reason for these problems is damage to the nerves in the esophagus, which may be caused by an abnormal immune system response. There's no cure, however there are a few treatments to assist in managing the symptons such as Botox injections, ballon dialation or surgery.
Patients in whom surgery fails may be treated with an endoscopic dilatation first. If this fails, a second operation can be attempted once the cause of failure has been identified with imaging studies. Esophagectomy is the last resort.
In December 2005, after losing 40 pounds in three months due to being unable to eat, I went for surgery. IT WORKED!!! I could eat again. I didn't feel the food getting stuck anymore and no more pain and pressure!!! I figured I had it beat.
During my first pregnancy in February 2009, I began to feel the same symptons again. I immediatley called my surgeon and he got me in for a Gastroscopy and seen that the Achalasia was back and it moved up my esophagus. But because of the pregnancy he could not operate but was able to inject Botox into my esophagus to paralyze the nerve endings and get me thru the pregnancy. In May, my baby was born and my symptoms started to show up again. (Botox can last up to six months in some people and it is needed again.) I decided I could tuff it out and went back to the operating table in December 2009. IT WORKED!!!! I could eat again. I didn't feel the food getting stuck anymore and no more pain and pressure!!! I figured I had it beat, again!! There was no way it could come back this time.............so I thought.
It May 2, 2014 I was driving home from work then, bang!!! I thought I was having a heart attack. Pain radiating from the middle to my chest into my left arm. My jaw hurt and I began to sweat. I made it home and called the ambulance right away. When they got to my house I was still in pain and they gave me two sprays of Nitroglycerin and two baby Asprin and loaded me into the ambulance. Once I got to the hospital they began running tests for a heart attack. All tests came back negative. The kept me in over night and had me see a cardiologist the next morning where I went for a stress test and an ultrasound of my heart. All tests were normal. The only conculsion was it had to be my esophagus spasming.
The symptoms of Esophageal Spasms are the same as a heart attack. So back I went to my Surgeon in October 2014, who refered me back to my GI specialist. My specialist determined that I was at End Stage Achalasia. I asked him, what that was and he said that my esophagus would need to come out and that was the only option to stop the pain, pressure and trips to emergency.
In January 2015, I went back to my surgeon where I asked him to go in again and see it he could perform the same surgery had had done in the past, he agreed. The spasms continued leading me to take a medical leave of absence from work. The spasms began to intensify and would always require a trip to emergency.
My specialist did another Botox injection on me and it lasted 5 weeks. Right after that the spasms were back in full force.
The best way to describe the pain is that of a strong labour contract with a heart attack and a charlie horse right smack in the middle of my chest.
I was hospitalized this past August because the pain was steady and unrelentless. Just in the month of August alone, I made 12 trips to emergency. Taking a Tylenol or Advil won't stop this pain. I need strong pain meds in order to find some type of relief.
On August 27, I went in for surgery at the Royal Alex to have the surgery repeated. I went to sleep and woke up very sore thinking that the spasms were behind me. The next day, the doctor came in to see me. She pulled up a chair and informed me that they were unable to repair my esophagus as the walls were to weak and if they were to have cut anywhere on the esophagus, it would have ruptured and it would have been life threatening. She informed me that they would need to remove my esophagus. I was devestated.
On September 2/15 I was at the surgeon's office getting the staples removed and bang!!! Spasms started in his office. He immediately called my specialist who happened to be doing an edoscopy clinic done the hall who said bring her on over and let do Botox. I was so happy!! Relief in site. Unfortunately the Botox lasted a mere 6 days.
This past year has taken a toll on my husband and my children. My children get very scared when I have an episode and I don't blame them because I am in tears and literally on the floor in pain and cannot do anything to stop it but go to the hospital. As of today's date September 30, I have been in emergency at least 50 times since May 2, 2014.
I have since gone to see both my surgeon and specialist and they are both in agreement that my esophagus need to come out. I am their "Special" case. Neither one of them have ever dealt with a case of Achalasia such as mine and are unable to discuss treatment with any other doctors in Canada because I am the only case that they are aware of.
Because I am "Special" in that aspect, I hace reached out to the Mayo Clinic in Rochester, Minnesota. They have a team of specialist that deal with Achalasia. My hopes are that they can see me and come up with an alternative game plan instead of removing my esophagus.
I have touched base with them and have gotten a rough estimate of costs and I almost had a real heart attack. Just for the first appointment, which includes a specialist looking at my case file prior to the appointment, is $7000 U.S. The average cost for an international patient visiting the Mayo Clinic in Rochester, Minnesota is $13,000 to $15,000 U.S. for diagnostics. This rough estimate does not include treatments or surgery, if needed.
I have recently met with a Thorasic Surgeon in Edmonton at the Royal Alex and he is able to preform a Thorasic Heller Myotomy on Nov. 18. This will give me at year of spasm free living until my esophagus need to come out.
My quality of life sucks right now. I am in constant pain from the spasms and seeing the hurt and concern in my family's eyes. I have been in emergency more than 50 times with this pain. I can't plan for anything because I never know when a spasm will happen. I am hoping that the Mayo Clinic can do something for me other than the removal.
I am a proud person and don't like to ask for help but I really need it now. I am trying to raise $75,000 to cover the costs for the Mayo Clinic and to get my family and I over there. I have taken into consideration the exchange rate and that our dollar isn't the greatest right now.
Any amount would be greatly appreciated and I would keep you in my prayers. Thank you for reading my story.
Organizer
Laurelle Downey
Organizer
Ardrossan, AB
