Our Roller coaster journey of Diabetes and Kidney failure

Discussion in 'Loss of Adult Child' started by Lullabyak, Sep 4, 2018.

  1. Lullabyak

    Lullabyak New Member

    I would like to share my Son's story who we lost back on Feb. 21, 2018. Kenneth was only 36 years old but had battled diabetes since he was 14. He had a normal childhood and learned how to handle the diabetes but it still continued to take a firm hold. He was dubbed a "brittle diabetic". In his 20's he did some things he knew he should not have done (drank, smoked, did not eat right) I did all I could to make him understand but as we know not all kids listen to their moms. In Feb. of 2015 he had to have total knee replacement due to Charkott syndrome. He was also battling blindness due to diabetic retinopathy. He had to move back home with my husband and I and we took care of him during recovery. After 6 weeks or so he was released to be able to go back to work. The eye surgeries seemed to stop the progression of the retinopathy and he had enough vision to still drive and work. He had been back to work not even two weeks when his eyes went while driving. He wrecked his truck and wound up in hospital. That is when we found out they were more concerned with his kidneys. His cretins were elevated and we then had to start taking him to a nephrologist. This was in April of 2015 and they said he had probably 3-5 years before he would have to go on dialysis. Well that did not happen, his kidneys totally failed on July 10 and on July 11 he began dialysis. What a roller coaster dialysis was. He started out on Hemodialysis and then the Doctor convinced him to try Peritoneal Dialysis. That was a bad decision as he just kept getting sicker and sicker. His kidney doc was not taking charge like I thought he should and my son, husband and I agreed he needed new doctors. We got him in with all OSU doctors and they really started getting him turned around. He was now on the transplant list awaiting a kidney/ pancreas transplant. During this wait there were many ups and downs, hospital stays, hold on transplant call due to illnesses. We finally got the call in October of 2016 but he was too ill to go through surgery. The doctors contemplated it for many hours before deciding it was not happen. Such a huge drop in our excitement but we kept fighting on. On January 6, 2017 we got another call telling us to come in that they had a kidney and pancreas. We were excited but also tried to stay realistic. This time surgery was a go. He got his transplant and after 22 years of being a diabetic he was no longer on insulin. Both organs were working beautifully. There were many ups and downs over the next 7 months adjusting immuno-suppressant drugs to make sure there was no rejection. In August his kidney was attacked by the BK virus which caused the kidney to fail so it was back to dialysis. The pancreas continued working properly so we forged on and waited till we could get him back on the list. That time never came. From August through September we saw a decline in his health overall. Dialysis was working but not like they had wanted it to. We made it to the one year mark of transplant on Jam. 6 2018. Dialysis was 3 days a week and things seemed okay and we figured the dialysis was just kicking his butt like before. On Feb. 6, 2018 I found my son unconscious on the floor in his room. He looked as if he were having a seizure. They got to the hospital and had to intibate him so he wound up on a vent. He could not speak and could barely squeeze our hands. They said he had diminished brain activity but could not determine why. His third night in ICU he had bitten through the tubing to his vent and so they removed it. The doctors said it was time for hospice to come in as there was no more they could do for him. He woke up the day hospice was going to bring him home. This was the 2 week in ICU so we put a hold on hospice. He managed to say three words and could squeeze our hands and said he wanted to fight. They moved him up to the transplant floors ICU where they cared for him. We watched him decline even more. He was no longer responding except for thumbs up signals or squeeze of the hand. He wanted to be with his dogs and wanted to go home. He managed to tell me in a whisper "home" as well as his older brother. We again went over everything with the doctors and they could find no rhyme or reason for his diminished capacity. They felt he should have been improving. We feel his body was tired and he wanted to fight but could not. We called in hospice once again on Feb. 19 (Kenneth's late grandmother's birthday) , we also called in his pastor from childhood. He came to see him that Sunday and told us he was ready to go home. When our pastor asked him if he had found peace with God, he squeezed his hand and gave him a thumbs up. Hospice brought him home on the 20th and he smiled as he felt his fur babies and we opened the curtains to let the sunshine in and opened his window for some fresh air. My daughter and I bathed him and put his own clothes on him. I set alarms for every 2 hours to turn him and when I went in for the 3:30 alarm I saw he was taking his last breaths. I held his hand and lay beside him and held him and he passed at 3:35 am. He made it 14 hours at home. I miss him terribly but I am thankful I got to be with him as he left this world.