After transplant surgery and discharge from the hospital, I lost an additional 20 pounds within 3 weeks and only weighed 95 pounds. I tried to eat and drink as instructed, but after awhile I’d throw up everything. I informed my nephrologist about my symptoms and she mentioned something about a condition called EPS and recommend I rush back to Scott and White. At Scott and White my transplant team informed me that the weight loss sometimes will happen after surgery. They ran a few test, but some test couldn’t be done as an in patient. They recommend I try to eat light foods and drink more water. They also didn’t think I had EPS because it was too rare. They discharged me after a few days.
In between follow up appointments, my symptoms didn’t improve and I had excruciating bloating in my stomach; to the point where I felt like I had to go back to the hospital. I was readmitted and the doctors were worried about my kidney and malnourishment. They started me on TPN, (IV nutrition) and fluids every day. I didn’t know at the time that doing the TPN every day is very hard on the liver. With TPN I gained weight but 2 weeks after I started TPN, I had to go back to Scott and White because my labs were out of the acceptable ranges, and my liver and pancreas were failing. There were multiple specialists who gave multiple reasons for these symptoms. In the end, they concluded the TPN was negativity affecting my organs and pulled me off. I again asked about EPS, and the doctors informed me that they’ve never seen EPS before, but was certain my symptoms couldn’t be from EPS. After taking me off of TPN and getting my labs back within acceptable ranges, they discharged me and recommended I try to eat.
At this time it was about September and I still had the bloating and vomiting after I ate. As I researched my symptoms and read the accounts from other people who had these symptoms, it was alarming how consistent my condition related to EPS. From the EPS Facebook community, I found Dr. Augustine, of U.K, who was a world renown specialist in EPS and the bowel. I sent him all of my scans that Scott and White had done, and he was able to confirm that my bowels were indeed cocooned and dilated. His diagnosis was EPS and he told me that surgery was the only way this could be corrected. I very much wanted to see him and have him perform the surgery, but there was no way I could afford to travel to the UK.
I prayed that God would make a way for me to have this life saving surgery and live. During this time I learned about a doctor in Cleveland named Kareem. He had many amazing reviews and performed seemingly impossible surgeries before. I sent all of my information, including the report from Dr Augustine, to the Cleveland Clinic for Dr. Kareem and his team to review. They contacted me back and told me they would be happy to review it, but it probably wouldn’t be until January 2018 before I see the doctor because he has so many surgeries from people all over the world.
I also shared my results with the doctors at Scott and White, and they finally agreed that it could be EPS. Because this condition is so rare they admitted there was little they could do for me and decided to relinquish my case to my local nephrologist . My nephrologist, Dr. Ellen Grimm, wanted to send me from San Marcos, Tx, to Cleveland, OH, in an ambulance, but my secondary insurance was through Scott and White and would only cover their doctors. I was promised a letter of medical need by Scott and White, but never got it. I also never received those out patient test because they cancelled my appointments. Anyway it was a problem for me, so I took it to God in prayer for help.
My husband was able to get me on his company’s insurance plan, but Medicare takes 30 days to switch insurance plans in their system. The way I felt, I couldn’t wait any longer. I prayed long and hard and the week before thanksgiving, I asked my husband if he would take me to Cleveland when he got off work, and I was astonished when he answered, “Ok,” without trying to talk me out of it. He drove us 24 hours across the country from Texas to Cleveland. The lord blessed us many times that day by delivering us safely and without our vehicle breaking down, keeping us awake, helping the hospital admit, and helping the insurance go through.
While here in Cleveland, I met with the doctors and the plan was to have my surgery after the new year, in March. There was a long list of people who were in front of me. In the mean time before my surgery, the doctors started me on TPN nutrition. They said my body was starving and dehydrated. I told them that I’d been on TPN before but it led to pancreatitis and high liver enzymes. At the Cleveland Clinic, they discovered the body does much better on TPN when you only add lipids(fats in thebags)3 times a week. They said doing it every day would be very hard on the body, but with their techniques I’d be able to stay on TPN for years if needed. Even though I was happy about getting back on TPN, the bloating was still excruciating. I prayed all night that God move me to the front of the list. The next day I met Doctor Costa, one of the residents that works with Dr. Kareem. He told me he would try to see if Doctor Kareem could do my surgery before he left to Egypt in December. A few days later I finally met Doctor Kareem. While looking at my scans, he noticed I had contrast fluid sitting in my bowel. It had been there since September when Scott and White were running test on me. He also told me that he could see that my bowels were dilated and the membrane wrapping my bowels. He told his attending doctor to schedule me for surgery next Tuesday and looked at me and said, “I’ve seen this case 8 times before. I’m confident that we can fix you up. Keep praying.” When he left the room, I burst into tears. Finally I had met a doctor who knew about my condition and could help me. God is great, and he has answered all of my prayers; and I shall not die, but live, and declare the works of the Lord. (Psalms 118:17) My surgery was this past Tuesday, December 5th. It is took 10 hours, and my gallbladder and appendix along with all the membrane that was wrapping and kinking my bowels. I’m still here in the hospital, 5 days later; but I couldn’t wait to share my story with everyone.
In conclusion, I’ve learned that EPS isn’t as rare as rumored. EPS might be going undiagnosed across the country. It takes a very skilled eye to see it. Often it’s not discovered until it’s too late, and the bowel has obstructed. The longer your on Peritoneal dialysis, the higher your chance or developing EPS. I’ve read that the development of EPS can occur in as few as 5 years on Peritoneal dialysis. Just looking at the Facebook EPS site, there’s so many heartfelt stories of people who have lost loved ones because EPS was missed or misdiagnosed by doctors. I must tell everyone who shared their stories, thank you so much. You have helped save my life. With out your stories, support, and lessons, I would have never met Doctor Augustine or Doctor Kareem and Doctor Costa. These great doctors, I’d recommend to anyone who has suffered from EPS and symptoms targeting the bowls and intestines. I’d also like to thank my nephrologist, Doctor Ellen Grimm. She saved my life too. It was she who first suggested EPS as a possibly, and she stuck with it. Even after the doctors at Scott and White tried to dismiss her claims by saying the diagnosis off of evidence and not speculation. Doctor Grimm wasn’t 100% sure that it was EPS because she couldn’t order any test for me due to insurance. But the symptoms and labs suggested EPS, and she did everything she could to get me the help I needed. I need to thank my friends and family who stuck by my side and helped me find the Facebook EPS Community and healing scriptures. Most importantly I owe all the glory to Jesus, my Lord and Savior. Because I asked it in his name, it shall come to pass. Thank you father in heaven.
I saw Doctor Costa yesterday morning, and he jokingly asked if I was saving for the Cleveland Clinic Hospital Fund. This reminded me that my journey isn’t over yet. There’s still a long road ahead of me and I must now invoke the name of the Lord, Jesus, please help me with my finances and debts on this sugary. I thank you for everything you have blessed me with this year. Two surgeries in 2017 and I’m still alive. Praise the Lord. If there’s anyone out there who would like to join in helping me with medical expenses, please feel free to contribute to my go fund me account. More importantly, if there’s anyone out there who is going through the same struggle with EPS or symptoms of EPS, please share your story with the community. There’s one thing I’ve learned it’s that sharing with others can help. It saved my life.
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