7-8-17 It has been almost five months since my liver transplant. I thought you would like to hear of my daughter’s health and my progress. Our daughter donated 65% of her liver and has recovered completely. Her blood tests indicate that her liver has regenerated to normal size. She was in the hospital for six days and was off from work for two months. She is back to most of her normal activities without any problems. Her doctor indicates it may take up to 6 months after surgery to feel like she has fully recovered. She will have another follow up at Johns Hopkins in August. I am continuing to heal and regain my strength. I have graduated from walker to cane and gained 20 pounds of the 170 pounds that I lost during my illness. I am slowly getting stronger while attending physical therapy three times a week. After being discharged from my seven week stay at Johns Hopkins, I had follow-up doctor’s visits every week, then every two weeks, then every three weeks, once a month, and now I return every six weeks for my follow-up appointments. I must have bloodwork performed twice a week and much of my follow-up is monitored by phone. I have finally progressed to not being required to wear a mask each time I go outside my home. Twice a day I must take a handful of meds. (Anti-fungal, anti-viral, anti-bacterial, several anti-rejection drugs, along with insulin and other maintenance drugs) As time goes by some of my meds will be discontinued and/or reduced the farther out from surgery. At this point, I feel the best in a really long time. I am not able to remember very much from before the transplant- most of time for up to a year prior to surgery I have no recollection of events, conversations, etc. due to high ammonia levels in my body that my body could not eliminating resulting from my diseased liver. I am grateful to you for your generous gifts, thoughts and prayers. Without your encouragement this adventure would be much more difficult to get through. You helped relieve the burden of worry of the financial burden and enabled my wife to stay with me the entire hospital stay. It is uplifting to know that we are able to depend on friends and family during hard times. Now it is up to me to take recovery slowly, one day at a time. I must take my handful of meds and go to my doctor’s appointments at Johns Hopkins. I must participate at physical therapy and remember to take my blood sugar 4 times a day, take my temperature, take my blood pressure and pulse twice a day. Thankfully and hopefully the largest of the financial burdens are over; however, there is still medicine to purchase and the various expenses associated with travel to Johns Hopkins. I am so proud to have friends and family like you. Thank you.
3-22-17 Terry had his first follow up appointmment at Johns Hopkins yesterday. Very pleased with his progress. Bloodwork results indicate that liver is working great. He was taken off one medicine, reduced strength of one and changed insulin doses. Next appoinment is next Tuesday. Going to try to do appointment and drive in one day instead of spending night in Baltimore. We will see if Terry is strong enough to do a one day trip.
Good news! A surgical date has been scheduled with the genetic testing on January 26, 2017. Now all we must do is hurry up and wait. Thank you for keeping us in your thoughts and prayers.
1/8/17 Johns Hopkins notified us this past week that our daughter, Heather, has been approved to be a live liver donor to give Terry up to 65% of her liver. We were told the surgery should be scheduled the end of January. 8 doctors and 2 operating rooms must be coordinated in order to perform the surgery. After the date has been scheduled there must be genetic testing done between Heather and Terry 7 – 10 days before the surgery. If the testing does not match, the surgery must be canceled. After surgery and without complications, Heather will be in the hospital for a week and will recover at home 2 months before returning to work. Terry should be in the hospital for 10 days to 3 weeks and a recovery of 3 to 6 months at home. It is suggested that he will need someone with him during his stay in the hospital and at least a month after he returns home. We will let you know when we have a surgical date. Thank you for keeping our family in your thoughts and prayers.
11/26/16 Good news, maybe? So far, our daughter is a match to become a live liver donor. The doctors do have a concern that her liver may not be large enough for Terry. Her veins and arteries may not match up and Terry may be too sick to survive with 60% of her liver. He may need a whole liver from a donor. She has 2 days of testing at Johns Hopkins. She must have more blood tests, EKG, Echo, stress test, cat scan, MRI, see a social worker, psychiatrist, pharmacist, surgeons. If she is a match surgery would be in about 6 weeks. I cannot imagine a better Christmas present. Please pray for my family. Love to you all.
8/16/16 We want to thank everyone again for their kindness and generosity. Your donations have helped to relieve some of the worries caused by Terry’s illness.
In August of 2013 we were on vacation and Terry’s belly became distended. His belly looked like he was pregnant and was very hard. As soon as we returned home Terry went to see our family doctor. Fluid was filling his abdominal cavity because his liver was not functioning properly. A diseased liver cannot process fluid going through the liver and backs ups into the stomach cavity. The fluid had to be removed by a needle inserted through the stomach wall. This is called paracentesis. Our doctor said, “You know you have end stage liver disease.” Terry told him that he did not. He had been seeing a gastroenterologist for elevated liver enzymes and the doctor never told him of his illness. We decide to change doctors. When Terry saw the new doctor he immediately told him that he needed a liver transplant and that he needed to go to Johns Hopkins for medical care.
Terry had to have the fluid drawn by paracentesis so many times, that the doctors suggested a TIPPS procedure be performed. A TIPPS procedure redirects the fluid that should be going through the liver to the heart. This puts a burden on the heart plus the body does not have a way to eliminate ammonia. He was prescribed a laxative 3-4 times a day to eliminate the ammonia. At first Terry had a hard time managing his ammonia levels. He was in the ER and admitted to the hospital because of high ammonia levels. Then the doctors added another medicine taken in pill form at the cost of $850 for 30 days. The high priced pill does work. Fortunately the drug manufacturer is offering us assistance with these drug costs.
Since last June, 2015 Terry has been hospitalized or visited the ER over 24 times. Most of those visits have been to Atlantic General with at least 6 times at Johns Hopkins. Last October he spent 2 weeks as a patient in Johns Hopkins. The doctors were administering diuretics by IV and Terry lost 50 pounds of fluid during those two weeks. His doctors thought that the large doses of meds would kill his kidneys which fortunately did not happen. The TIPPS was working however; it put a burden on his heart (which he knew that his aortic valve was not working properly). In February, 2016 Terry was admitted to Johns Hopkins to have his aortic valve replaced and one heart bypass. The doctors gave him a 50/50 chance of survival. He did not have any choice as without the heart surgery he would not survive a liver transplant and probably would not live more than 2 years. The surgery went well and Terry is now recovering from the open heart surgery. His has progressed much better than the doctors ever anticipated. At this time, he is finally recuperating from the heart surgery and is feeling much better. He still needs lots of rest, naps, and trying to live as normal a life as he is able.
Terry saw his liver transplant doctor at Johns Hopkins a few weeks ago. The doctor stated Terry is in stable condition. As long as he stays stable the liver transplant is not necessary; however, as the liver continues to stop working the transplant will be necessary sometime in the future.
5/15/16 My name is Terry Fleming, and my wife, Beverly and I are natives of Pocomoke City, MD. We raised 2 children in this town and have one granddaughter.
I have end stage liver disease and require a liver transplant sometime in the future. I was diagnosed with end stage liver disease 3 years ago. I am hoping to raise funds to help with costs associated with the transplant that will be performed at Johns Hopkins in Baltimore, MD. While my insurance does cover the cost of the surgery, there are an enormous amount of things that are not covered like: weekly/monthly traveling expenses to Johns Hopkins, non-covered medications, hospital co-pays and following the transplant there will be anti-rejections meds that I must take for the rest of my life (cost is approximately $25,000 per month).
My family and I will appreciate your donation. Funds that are donated will help relieve the burden of worrying about the costs associated with saving my life.
Thank you very much for your heartfelt donation. In this economic climate I know that it may difficult to fund everyone and everything. If you choose to help me with my quest, I thank you from the bottom of my heart. God Bless.