The receipt of the diagnosis of End Stage Kidney Disease (ESKD) is a most devastating piece of news for any patient. It may result in significant decline in the quality of your life. Some patients have to stop working and are now unable to take care of their family. It is usually accompanied by a significant stay in hospital prior to the commencement of dialysis. The advent of ESKD can result in depression and despair. Not many patients adjust their lifestyles, take medication, obtain dialysis or a transplant and live relatively productive and rewarding life. Becoming active in a progressive support organization can become very rewarding in overcoming the receipt of bad news.
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Be a Steward not a Victim.
Living with End Stage Kidney Disease(ESKD) –Beverley Knight
A kidney transplant 43 years ago –Gail Yarde
Living with Kidney Disease for over 40 years. –Allan Haynes
Patient Data Collection Form.
My name is Gail Yard and I live in Canada, Allan Haynes is my brother. Our family have chronic kidney problems, Allan and I and my mom who died in 1977.
In 1967 when I was 12 years old I got one morning and my feet and eyes were swollen. My mom took me to the doctor where I was diagnose with glomerulonephritis which came from a cold that developed into strep throat which effected my kidneys, my kidneys were in trouble. I was admitted to hospital under Dr. Oscar Jordon and started on prednisone another medication.
For the next 9 years my kidneys worked enough until 1976 when Dr. Jordon determined that I needed a kidney/renal transplant. In February of 1976 my mom and twin sister Olivia worked with Dr. Jordon who worked with Dr. George DeVerber of Toronto Western Hospital where I was given the opportunity to go to Canada for transplant. Due to the fact that I knew that kidney disease was a chronic family disease I told Dr. Jordon that I did not want my brother or sisters tested to see if they would be a match because I could not deal with the repercussion if their other kidney failed. I did not want my brother or sisters to have to deal with this sickness.
My mom and I went to Canada where I was admitted to Toronto Western Hospital l under Dr. George DeVerber. I was very sick, my liver was in trouble and my creatinine was over 500. I was put on peritoneal dialysis, the first session was a temporary. A small incision was made below my belly button and a long tube was push into my abdomen while I was awake, this tube was hook to the machine where dialysis commence, it worked great and I felt better. At the end of that session which lasted for 8 hrs the tube was removed and the hole plugged.
The next peritoneal session was 3 days later, the plug was removed and the doctors attempted to push a long tube into my abdomen again but it was not an easy process as the whole tried to close, they were eventually successful. After the third session, the decision to input a permanent tube into my abdomen was made.
While on dialysis my blood pressure would drop very low and I was given sodium tables to help. Unfortunately, those tables made me very sick. One day I was having a test done and I told the nurse that I was going to be sick and they said “no you are not”. Well they never doubted me when I said that again because I vomit all over the machine and those machines could not be used and required major cleaning.
While having dialysis I stayed with my cousin Denise and her husband Carol Moore took me to the hospital twice a week for peritoneal dialysis. Due to the fact that my blood pressure drop so low, it was an adventure when I had to go to their home. To get there, I would need to sit every opportunity I got. When I got to their apartment, Carol would help me out of the car, take the suite case into the lobby where I would sit on it, when the elevator came he would put the suite case into the elevator, where I would again need to sit on it. When we got to our floor, he put the suitcase outside of the elevator, where I sat on it and he would go to the apartment open the door and then I took opportunity to run as fast as I could right into bed before I passed out, where I stayed until my blood pressure rose to a normal level.
In April I had an opportunity to receive a transplant but because I was too far from home, that kidney was given to someone; but never fail God knows best.
After the permanent peritoneal dialysis tube was input into my abdomen, unfortunately, a cyst developed on the incision and to avoid another operation to move the permanent peritoneal tube, they attempted to remove the cyst, which was not successful, it returned. Therefore, I had to have another operation to move the permanent peritoneal dialysis tube. A few days after this operation, while having in hospital having dialysis another kidney came in. My doctor was concern about me just having an operation which was in the middle of my abdomen and having another on my right side which would be the transplant. A specialist was engage to determine if I could have two major incisions at the same time and it was determined that it was ok. I received all the appropriate test and it was determined that it was a match and at 6 pm on June 15th, 11 days before my 21st birthday, I received a great kidney of a 19 year old young man who was killed in an accident. It worked from the moment it went in and I give God all the glory.
After the transplant, I was going to the washroom so much that I was peeing more than I could drink and went down to 79 lbs. The nurses came many times during the night to ensure I drank something because the doctors were not going to let me go home until I proved that I could drink more than I pee. One funny moment I would never forget. My twin sister came to visit me and brought me some flat red shoes and since even my feet had gotten so small, it was the most comical sight. Olivia laugh and laugh and laugh and laugh. It was such a sight that I could not stop laughing either.
I got married in 1980 and in May of 1981, I had a son, what another wonderful moment. Today I have 3 grandkids two boys and a girl who are the greatest joy and adventure since I never thought that I would never have a son and grandkids.
On June 15th 2019, it was 43 years since I had my kidney transplant. Life is good. Thank God, my donor, his family, my doctors, nurses, other health care givers, my family and friends. God has blessed me with three beautiful grand kids. My only son was born after my transplant surgery.
Networking patients and families with support and medical care while educating people about kidney care.
To educate the general public about kidney care and kidney disease symptons.
List medical support and social support services throughout the english speaking Caribbean and also for visitors.
To highlight and list medical services within each Caribbean country for Kidney patients.