I have had GCKD since I was 4 I'm 30 now. Lots of meds, doctors, gout, etc... I also have severe depression, and panic disorder. Creat - around 5.5 hem - 10. I'm not on dialysis, and have a donor lined up. ( Good friend of mine ) after reading all these stories, it seems Like I would be worse after the transplant. All the side effects of the drugs i already have, how much worse would it get. Even when I was young I never thought I would need a transplant. I think my kidneys are good enough to coast like this, so I'm a little more tired than normal, that's not as bad as half of these posts sound. I just know what to do. I would be doing the transplant for everyone else but myself too. I would never even consider such a thing if it wasn't for my mom asking me to get on the list. As of right now even if I had all the energy in the world I would still just be sitting in my room. My depression is so bad would it be worth the transplant... Good lord. I know there are great outcomes, and im sure I would survive the surgery and all, but... I just needed to get that out. Any ideas???
I have had two kidney transplants and agree with you 100%. Euthanasia should be an option for all kidney transplant patients who don't want to deal with dialysis or a transplant. Some people can handle with all the needles sticks, pills and doctor visits...some just can't. I was happy and totally healthy (or so I thought) for the first 20 years of my life then was diagnosed with this god awful disease during a routine physical. It hit me like a ton of bricks and I have never been the same. I had a transplant at age 24 and had finally gotten almost back to normal and had built a career, then the kidney failed and I had to go on dialysis, lost my job, and had to retire on disability at age 35. Now five years later Social Security has decided I am not disabled and is cutting off my disability benefits, but I have no hope of ever finding another job at age 40 with my medical history. I can't afford my pills and medical visits so I have no choice but to go back on dialysis or die.
The Evil Empire is not the former Soviet Union is the US of A!
Hi - I understand how you feel. I was never on dialysis either...I was advised to prepare but skipped right to the transplant.
I am on a steroid free program however in 4 months I have gained all of the weight back that I lost and continue to gain. I have anxiety and depression with low energy. I am not myself and feel like I'm struggling to cope. Now my hair is falling out. I am feeling incredibly frustrated and feeling very alone in this. I have to work full time and have all of the additional pressures of raising a family and paying the bills. Hang in there...you are not alone.
Understanding kidney recipient. I don't know what to say because I'm dealing with the same kinds of things, living alone, no partner, and having an elderly parent that while I love dearly- with whom I now have difficulty communicating without making her feel I'm critical. I feel great one day, and the next I can't see a point to my existence. Maybe it's the Prograf, maybe it's the situation, maybe it's a combination of a lot of different factors. I feel hesitant to bring it up to anybody since other issues were always addressed in a "how can we get the minimal number to dismiss his complaint" type of way. From hemoglobin levels and blood pressure dropping while on dialysis, to neurological pain post-bilateral nephrectomy, to testosterone crashing to 170, insomnia, weakness, loosing virility and my partner, not to mention all the pressures and changes (medical and financial) that happen going from dialysis to transplant. I even got a donor kidney from someone with a staph infection and positive for Hep. :( Anyways, so yeah I understand the sense of being overwhelmed and the varying degrees of depression post transplant. I struggle with it too, and though I may be deluding myself, I just keep telling myself that "life changes all the time- you can never tell when you will meet someone, or have a new opportunity, or experience something that lifts your spirits; so don't make a permanent decision over a temporary problem." (even if that problem is not so temporary after all)
I love your honesty...you cheer me up...I have never suffered anxiety or depression in my life but since my transplant its a constant battle and there are times where I wonder how long this will last and is this really how I want to live...I think being really honest and getting it off your chest is healthy...even if u have had a few drinks!!!...good luck to you
I had my transplant 10 months ago and I am on the same med regimen aa you. At six months I had the same side effects as you. For hair loss I started taking biotin, which eradicated hair loss within two months. The shakes have disappeared as well as the diarrhea. Exersicise has been a tremendous help too. It has taken until now for me to finally feel like myself again.
Hi..I have a kidney transplant for almost 9 yrs. now.and I just lost my sister 4 weeks ago to colon cancer too! You did'nt say..did she have a kidney transplant too? Btw..she had her new kidney for only 5 yrs..go figure..her donors brother had colon cancer "Aggressive " and her donar smoked 24/7..but yet her kidney was good till the end..and herdonars brother died of Aggresive c ancer..im really nervous now cause now colon cancer rund in my family..from her only..never has..till now..I have to go for a colonoscopy..
I just thought I would write you and maybe lighten your concerns and worries. Hang in there, it does get better. I had my transplant in 1971 I was 17. I am now 62 and still have my father's kidney. It just turned 92 years old. God Bless my dad. I had two sons in 1975 and in 1978. Live your life, take your meds. Live your life, be happy. I spent all those years doing what you are doing now, don't. I worried for nothing and here I still am. I know meds are a pain, but it gives you life. So stop and live. It will get better. You are in my prayers. Donna
I am five weeks out since my kidney transplant. Physically I am doing well. Swimming now and walking. But I feel depressed. The prednisone makes me feel shaky and it may also be the prograf and Cellcept. Before the prograf was lowered and they changed by antibiotic prophylaxis I experienced muscle weakness and lightheadedness. Maybe I'm stir crazy, maybe the transplant is making me recall my childhood where they first detected kidney disease. I operated so long thinking I was cured. And fifty years later my kidneys collapsed. I had a good match in my sister and even was able to avoid dyalsis. I know I am lucky but I can't shake the feeling that I have no idea what to do with the rest of my life. Has anyone else been feeling that.
My partner is the same. He was reluctant to accept a kidney from his daughter, but did eventually agree and it happened 6 months ago. Everything went well and they are both okay. But his mood has been dreadful since. He is angry all the time, shouting at people in the street, rude to people, always picking arguments with me, fed up with everything. Don't know what to do to help him. Sometimes he does realise that he has this anger inside, but at other times everything is everyone else's fault. It is very hard to deal with.
I also agree. I've had enough of this disease. My life would be so much happier if I knew that when I've had enough, someone could legally put me to sleep...
thanks for your words i had my transplant kidney at age 49 in 2006
it is now 9 years later and things are ok i still struggle to keep weight down
if i eat a vary low salt diet stay away from pastas breads and sweets i look ok
good luck to all
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Hair extensions saved my life after I had my transplant, I felt so trendy and young ha ha! I would definitely recommend them
I am 2 and 1/2 years out from my transplant and honestly it has been the worst experience. It would be great if it weren't for these meds. I have every side effect possible. I am 33 year old male. My hair is extremely thin from the prograf and my skin is red blotchy and full of pimples. I also have extreme anxiety to the point I have not left my house in the last 6 months. Of course I have other side effects such as depression, insomnia, suicidal thoughts, confusion, memory problems and an inability to concentrate etc etc. Don't get me wrong when I was on dialysis I was not happy either but I feel I was able to deal better with it. I actually wrote down today a pros and cons list of having a transplant and a list of pros and cons of dialysis. I have to admit in my case dialysis (which I was on for 4 years mostly peritoneal dialysis) is looking like a better option for me. I have been researching other options of transplant that use no anti rejection meds. Though these are in the trial stages this would be the only way I would ever consider getting another transplant. I haven't made up my mind about whether or not to stop my meds. I try to hold on to some hope the things will get better but they haven't so far. I get jealous of the people who get little to no side effects from these meds but it is just the luck of the draw I suppose. I realize you posted this over a year ago, however; I do hope everything improved for you. by the way I have been off prednisone for over a year and things are still terrible. Also to those that will respond and tell me it was a gift and I should appreciate it, I do, however I am seeking happiness in my life not trying to extend one that I am miserable living.