Stand with Sue, Help me eat again!
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Why do a medical trial in Houston?
This is an opportunity for me to receive medicine that my doctors will not prescribe for me. It is a medication that they are trying to approve here in the United States. I have the chance to help others suffering from gastroparesis. This medicine works in the stomach, not the brain like Reglan, so it has less side effects. It would give me the opportunity to have my feeding tubes removed permanently.
Why am I asking for so much?
A car needs to be rented for reliable transportation to Houston. It is a 5 hour drive and I am unable to drive myself. I'm relying on family and friends to drive me down there since I cannot tolerate sitting and need to be able to recline. Each trip will require a 3 to 5 day stay in the area since doctors will be doing testing and monitoring. The money I’m asking for would go towards a car rental, gas, food, and hotel. If my husband must drive me, that means he would be missing just as many days of work and we are currently a one income family. Each trip would cost approximately $1,100 for the bare minimum stay in Houston. The doctors have informed me that it will be at minimum 6 trips to Houston, should no complications occur.
This was written by a dear friend: I met Sue when she joined our Superior Meseneteric Artery Facebook group. She had just been diagnosed with SMAS in 2015, and was looking for information and support. SMAS is a rare gastro-vascular syndrome where the intestines are compressed between the aorta and the SMA artery, making it very difficulty for food, and even liquids to pass through the area and people can literally starve to death without proper treatment. There is no cure, and symptoms include weight loss, vomiting, nausea, a feeling of fullness after just a few bites of food, malabsorption, and gastroparesis. Sue’s doctor decided to try a feeding tube to help her with nutrition and avoid the pain of eating, so she had an NJ tube, a feeding tube through her nose that bypassed her stomach and the blockage in her intestines that went into her jejunum. She had that feeding tube for 6 months, but she continued to lose weight, 35 pounds in all, down to 100 pounds, where she became weak, frail, and it was decided that she needed surgery allow her to eat without pain. Sue had a surgery called duodenojejunostomy, DJ surgery, that created a small opening before the blockage for food to pass. This surgery worked for about 6 months. More testing revealed that Sue’s duodenum had quit working. She and her doctor decided to try another surgery in August 2017 called a gastrojejunostomy which connected her stomach to her jejunum. After this surgery she found that she had developed gastroparesis. She and her GI doctor tried multiple medications to help with the gastroparesis, while Sue was also started on 24/7 tube feedings through tubes placed in her abdomen. One placed in her stomach called a G-tube used to vent and drain stomach contents since her stomach doesn’t work, and a J-tube for all her nutritional needs. The medications the doctor tried didn’t work because Sue was allergic to them. These medications work on the brain to stimulate stomach contractions and have many side effects, and Sue was one of the people who had those side effects. Sue was lucky to be accepted into a Medical Trial for a drug called Domperidone located in Houston, Texas. This drug is an approved medication in many foreign countries, but unfortunately isn’t approved here in the U.S. Sue will need to travel frequently to Houston for medical testing and to receive this medication which will allow her to begin to eat food by mouth again. She is desperate to be able to eat and return to a more normal life. She has been on medical leave from her job since August 2017. She tries to assist her husband’s income by sewing weighted blankets and tubies pads that are used y people with G and J tubes like she has. She makes a very small profit because she knows that people like her aren’t able to afford these supplies either. It is my hope that we can raise enough money to help Sue with travel and hotel expenses so she can make the trip to Houston to get this much needed medication.
This is an opportunity for me to receive medicine that my doctors will not prescribe for me. It is a medication that they are trying to approve here in the United States. I have the chance to help others suffering from gastroparesis. This medicine works in the stomach, not the brain like Reglan, so it has less side effects. It would give me the opportunity to have my feeding tubes removed permanently.
Why am I asking for so much?
A car needs to be rented for reliable transportation to Houston. It is a 5 hour drive and I am unable to drive myself. I'm relying on family and friends to drive me down there since I cannot tolerate sitting and need to be able to recline. Each trip will require a 3 to 5 day stay in the area since doctors will be doing testing and monitoring. The money I’m asking for would go towards a car rental, gas, food, and hotel. If my husband must drive me, that means he would be missing just as many days of work and we are currently a one income family. Each trip would cost approximately $1,100 for the bare minimum stay in Houston. The doctors have informed me that it will be at minimum 6 trips to Houston, should no complications occur.
This was written by a dear friend: I met Sue when she joined our Superior Meseneteric Artery Facebook group. She had just been diagnosed with SMAS in 2015, and was looking for information and support. SMAS is a rare gastro-vascular syndrome where the intestines are compressed between the aorta and the SMA artery, making it very difficulty for food, and even liquids to pass through the area and people can literally starve to death without proper treatment. There is no cure, and symptoms include weight loss, vomiting, nausea, a feeling of fullness after just a few bites of food, malabsorption, and gastroparesis. Sue’s doctor decided to try a feeding tube to help her with nutrition and avoid the pain of eating, so she had an NJ tube, a feeding tube through her nose that bypassed her stomach and the blockage in her intestines that went into her jejunum. She had that feeding tube for 6 months, but she continued to lose weight, 35 pounds in all, down to 100 pounds, where she became weak, frail, and it was decided that she needed surgery allow her to eat without pain. Sue had a surgery called duodenojejunostomy, DJ surgery, that created a small opening before the blockage for food to pass. This surgery worked for about 6 months. More testing revealed that Sue’s duodenum had quit working. She and her doctor decided to try another surgery in August 2017 called a gastrojejunostomy which connected her stomach to her jejunum. After this surgery she found that she had developed gastroparesis. She and her GI doctor tried multiple medications to help with the gastroparesis, while Sue was also started on 24/7 tube feedings through tubes placed in her abdomen. One placed in her stomach called a G-tube used to vent and drain stomach contents since her stomach doesn’t work, and a J-tube for all her nutritional needs. The medications the doctor tried didn’t work because Sue was allergic to them. These medications work on the brain to stimulate stomach contractions and have many side effects, and Sue was one of the people who had those side effects. Sue was lucky to be accepted into a Medical Trial for a drug called Domperidone located in Houston, Texas. This drug is an approved medication in many foreign countries, but unfortunately isn’t approved here in the U.S. Sue will need to travel frequently to Houston for medical testing and to receive this medication which will allow her to begin to eat food by mouth again. She is desperate to be able to eat and return to a more normal life. She has been on medical leave from her job since August 2017. She tries to assist her husband’s income by sewing weighted blankets and tubies pads that are used y people with G and J tubes like she has. She makes a very small profit because she knows that people like her aren’t able to afford these supplies either. It is my hope that we can raise enough money to help Sue with travel and hotel expenses so she can make the trip to Houston to get this much needed medication.
Organizer
Sue Ann Curtis Kibby
Organizer
Sherman, TX
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