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How do you cope with a family member on dialysis? =(

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  • How do you cope with a family member on dialysis? =(

    My story begins when i was a little girl. My dad had been diagnosed with chronic kidney disease. When he was 13 he got really bad strep throat and it attacked his kidneys. He had one kidney transplant but then they both began to fail. I grew up not really knowing what it was or what was going on. I thought he was just as healthy as anyone else. But as i got older (now 21) and growing much closer to my father i began to realize that what he has is a very serious thing. I watched him be rushed to hospitals and get hooked up to all kinds of machines all the time and of course with kidney disease comes more complications. He had to have an anurism worked on and triple bypass surgery both in the same week. I still remember when,( i dont even remember why) but i was looking threw the videos on his phone and he had left a video telling me and my brother that if he doesnt make it that we need to take care of my mom and that he loves us all very much and hopes we all do amazing in life. At that moment, like many other moments i felt like that was the end of it all and i just broke down, This was 4 years ago.

    He has been on the list for a kidney for over five years now (hes 47). He went from daily dialysis to nocturnal dialysis 3 times a week. As afraid as i am of needles i tell him all the time i will go through anything to give him one of my kidneys but he wont let me, He tells me if anything happened to me he wouldnt be able to live with himself.

    No one in my family, not even really my dad knows how much it really affects me to think about everything he has gone threw and how sometimes i just wish that he didnt have to go through everything he does, and why cant it just be passed on to me... he has had enough already you know? When will he be able to wake up and eat a banana or drink some orange juice if he wants to? When will he get that call from the hospital that he has a kidney waiting for him...

    There are times when i think about it all and i just sit in the bathroom and cry because people ask me how my dad is doing and i say hes good but i know deep down hes not doing so good and i know that day will come when my dad just isnt going to be able to handle his health anymore and it just hurts me so so much. Im not sure how to handle him going through dialysis. Im not sure how to handle when i know hes not feeling well because of his illness, i dont know what to think when im sitting there crying because i dont know what im going to do when that day comes that my dad cant do dialysis anymore.

    I dont talk about this with anyone in my family because if i am weak towards my dad i am afraid it will make him upset and affect him somehow. I try my best to be strong for him, and i know he doesnt like talking about his illness or treatment. I shouldnt be so selfish,

    Although i have depressed moments about him haveing this disease i do know that he lives life to the fullest and he works 60 hour weeks, and does more with himself than most people i know which is probably helping his health. He is a huge inspiration for those who feel like they just have nothing left and cant do it anymore.

    I am very thankful to have my father for the time being i love him very much,., maybe one day he will get that call that a kidney is waiting for him

    trying to cope the best i can as time goes on...=([/FONT]

  • #2
    I have a brother who was diagnosed with Goodpastures Syndrome a year ago today. He had been urinating a dark color and coughing up blood for awhile until he got sick enough and went to a doctor who told him he had a sinus infection from smoking cigarettes. He finally went to the Access medical center where they sent him to the ER because he was low on blood. The ER immediately knew something was wrong and had him transferred and admitted to another hospital. It took two days and a kidney biopsy to diagnose him with this rare disease. He was only 21. Austin spent almost 30 days in the hospital getting plasma transfusions to combat the antibodies that were attacking his lung and kidneys. We found out about two weeks into his hospital stay that the damage to his kidneys was irreversible and that he would need to have a transplant. He went in to surgery to get a catheter put in his chest to start hemodialysis.He did not like doing the hemo in the hospital or at the clinic when he got out of the hospital. He got the port in his stomach for peritoneal dialysis at home. He did okay for the first few months when he got home, but then depression set in. He did not have much of a social life before he got sick and being on dialysis made his situation worse because he felt like he always had to be at home doing treatment. He struggled with the diet the most because he wanted to still be able to have control over something I guess. There were many days were he was bloated and puffy like the Michelin man. It was a scary time for our family. He began smoking again and not going to the doctor. He wouldnt tell his doctor what was going on and began smoking pot. I felt like he was giving up on his life. The last few months he had quit smoking pot because our parents found out and told him that he would never get a kidney if he smoked. He argued that even though he wanted a kidney, the weed made him feel better. However, thankfully he realized that he was making a mistake. But he still wasnt doing what he was supposed to do. There were times where we could tell he was tired of being sick and of everyone telling him what to do. He would not do his treatment and did not follow up with the PD clinic, the dietitian, and the doctor. For about a month, anytime he ate, he would vomit. Then he began to get headaches and his vision began to blur. He got glasses, and the glasses didnt help. His vision was still bad. Everything came full circle this Christmas. On Christmas Eve, he went to the ER with a severe headache. The nurse took his BP which was 212/115 and gave him some muscle relaxers and a allergy shot and sent him home. He hooked up to his cycler that night and sometime between midnight and 6am Christmas morning, he fell out of his bed and had a seizure. My mother found him at 6am shaking in his floor. They called 911 and he as immediately placed on a ventilator and placed in ICU. He was kept under sedation for three days while the doctors determined the cause of his seizures. Turns out it was a uremic seizure brought on by not getting the toxins out of his body via dialysis. He luckily survived this episode with no brain damage or long term damage. He is at home now and doing better. Hoping that this stubborn 22 year old is ready to get healthy and get a kidney, I love my brother dearly, he is the only sibling I have and as a big sister. He is going to hopefully go in and get put on a transplant list and my mom and I are having our paperwork processed to see if either of us can donate or enter the swap program. We are trying to get him some counseling and also looking for some kidney support groups. But it would be helpful to hear other stories of people who have similar issues. Best!


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