I was diagnosed with ESRD at age 26. My creatanine was 39 and my hemoglobin was 4.3...needless to say I should have died by that time. Funny thing is I was only slightly lethargic but still worked out and ran, which is probably why I lived. I also developed severe peripheral neuropathy which eventually paralyzed me below the knees, although it healed to where I just can't move some toes; the pain is still there, though.
I was on dialysis 6 years until my second transplant in Dec 07. My first one never worked, but this one is working just great so far. Physically, I feel great; all the problems I had during dialysis such as joint pain have largely disappeared. I also lost 30 pounds, although I was never large to begin with...I'm 6 feet tall and 164 pounds now. My PRA was only 7% which meant a steroid-free regimen.
In spite of it all I usually feel terrible emotionally. The anxiety and depression (which I attribute to Prograf) are taking their toll. Things are difficult, especially with my family who takes it personally. My mother crying saying I don't love her anymore sends me over the edge (she's done this multipe times). My father won't even speak to me. I try to tell them that it's the drugs but I don't think they buy it. I guess they feel I've turned from their cheerful (ableit sick) son to an ungrateful son who wants nothing to do with them and that makes things worse for me. I have friends I have not talked to in a long time as well and I think my mental issues drove away a potential significant other.
I worked full-time as a financial analyst during dialysis and performed very well and hardly missed work. Since my return 2 months ago I feel no motivation. Everyone is being very patient with me but I don't know when that will run out. I think their expectation was an even better me with even more analytical capacity, but so far I haven't delivered.
It's almost come to the point where I prefer dialysis as at least then I was usually in good spirits and made the best of it, but I know that even though I took to it well that isn't a real solution as eventually your bones will wear out.
It's good to know that I'm not the only one going through this. It really seems the best course of action is to go to my nephrologist and ask for xanax but the stigma attached to mental illness makes it tough to do. I have a history of responsible use of very potent drugs (fentanyl, oxycodone, methadone) so I don't think he'd say no. My doctor deals mostly with dialysis patients so the whole "post-transplant depression" thing may be unfamiliar to him.
I was on dialysis 6 years until my second transplant in Dec 07. My first one never worked, but this one is working just great so far. Physically, I feel great; all the problems I had during dialysis such as joint pain have largely disappeared. I also lost 30 pounds, although I was never large to begin with...I'm 6 feet tall and 164 pounds now. My PRA was only 7% which meant a steroid-free regimen.
In spite of it all I usually feel terrible emotionally. The anxiety and depression (which I attribute to Prograf) are taking their toll. Things are difficult, especially with my family who takes it personally. My mother crying saying I don't love her anymore sends me over the edge (she's done this multipe times). My father won't even speak to me. I try to tell them that it's the drugs but I don't think they buy it. I guess they feel I've turned from their cheerful (ableit sick) son to an ungrateful son who wants nothing to do with them and that makes things worse for me. I have friends I have not talked to in a long time as well and I think my mental issues drove away a potential significant other.
I worked full-time as a financial analyst during dialysis and performed very well and hardly missed work. Since my return 2 months ago I feel no motivation. Everyone is being very patient with me but I don't know when that will run out. I think their expectation was an even better me with even more analytical capacity, but so far I haven't delivered.
It's almost come to the point where I prefer dialysis as at least then I was usually in good spirits and made the best of it, but I know that even though I took to it well that isn't a real solution as eventually your bones will wear out.
It's good to know that I'm not the only one going through this. It really seems the best course of action is to go to my nephrologist and ask for xanax but the stigma attached to mental illness makes it tough to do. I have a history of responsible use of very potent drugs (fentanyl, oxycodone, methadone) so I don't think he'd say no. My doctor deals mostly with dialysis patients so the whole "post-transplant depression" thing may be unfamiliar to him.
jondeere85-- Is English not your first language or are you just retarded?
You post really set me off and I feel quite a need to give you a swift kick down under. How dare you come on here and belittle the way many of us feel and make this a judgmental place to go and vent our feelings. If you're happy not being able to pee like a regular person GREAT! I am happy for you that you pee weird if that makes YOU happy. The rest of us aren't!
Don't go and also assume that many of the people that have posted are not grateful! Like everyything else a human being has to deal with, transplantees also have ups and downs, good days and bad days. I for one know how lucky I am when I go to a cancer support group and see how disfigured people are with brain tumors and I also got to see how normal life could be when I can keep up with all my healthy friends and party all night.
You are so unbelievably condescending and if you don't like the contents of the thread that I STARTED for support for the emotional aspects of kidney transplants...THEN LEAVE!
You post really set me off and I feel quite a need to give you a swift kick down under. How dare you come on here and belittle the way many of us feel and make this a judgmental place to go and vent our feelings. If you're happy not being able to pee like a regular person GREAT! I am happy for you that you pee weird if that makes YOU happy. The rest of us aren't!
Don't go and also assume that many of the people that have posted are not grateful! Like everyything else a human being has to deal with, transplantees also have ups and downs, good days and bad days. I for one know how lucky I am when I go to a cancer support group and see how disfigured people are with brain tumors and I also got to see how normal life could be when I can keep up with all my healthy friends and party all night.
You are so unbelievably condescending and if you don't like the contents of the thread that I STARTED for support for the emotional aspects of kidney transplants...THEN LEAVE!
my brother has had 3 kidney transplants AND a kidney and liver combined transpant, the orignal kidneys removed as well.
He has a stomach like a patch work quilt, but still takes his shirt of on holiday both here and abroad. Yes he has been depressed at times either just after the transplants or sometimes as and when he's not feeling so great, BUT the only time he hasn't worked is when recuperating or leading up to a transplant and he had the first one about 24 years ago, some have lasted longer then others, and not always the best match that lasted the longest. Stick with it, yes you will have down days, but I'm sure the good days will outway.
Well done all off you
He has a stomach like a patch work quilt, but still takes his shirt of on holiday both here and abroad. Yes he has been depressed at times either just after the transplants or sometimes as and when he's not feeling so great, BUT the only time he hasn't worked is when recuperating or leading up to a transplant and he had the first one about 24 years ago, some have lasted longer then others, and not always the best match that lasted the longest. Stick with it, yes you will have down days, but I'm sure the good days will outway.
Well done all off you
Hi, I'm so glad to have found this discussion. It seems like before my transplant people said I would feel incredible afterward and would be better than ever. Although I am very thankful for this "gift of life", it has been much more difficult than I was prepared for. Yes, surgery is painful so I expected that, but it's the changes to your body that are difficult. My stomach feels distended and large constantly, and my new kidney sticks out like a large lump on my right side. The prograf makes me shakey too. Oh ya, and I got CMV after 4 months so I needed to be on IV's twice a day for a month, but now it's dormant. I have constant pain around my incision, and a numb feeling over part of my stomach and bladder. These things really suck, and I don't know if it's the physical stuff or the drugs but I do feel depressed sometimes. When I'm depressed I don't like to tell my wife because she gave me this wonderful gift and it was a big sacrifice for her and I don't want to bum her out. All this said, I am very thankful, and I have started to notice days when I feel incredible emotionally (not physically). I'm really hoping that now that I feel better I can be more active and lose weight because my big stomach combined with enlarged kidneys and liver are making my shape really weird and it's hard to fit clothes around all this. Anyway, I may check into an antidepressant with my doc as it sounds like it's helping many of you. Don't some antidepressants help you lose weight too? I'm determined to have a great life, as I'm only 45 and plan to live another 45 years! I know it's difficult, but we all need to work hard to have a great attitude!!! You can't just expect it to happen...you need to work at it and get all the support you can from your family and friends. I know there are still great things waiting for me in this life, or I wouldn't have gotten this great new kidney!!!! Stay positive...do your best...and if you have a crappy day try and get a good night's sleep because tomorrow is a brand new day and YOU CAN DO IT!!!
I had kidney failure at age 14.I can say that it is a very hard thing to go through and still is. Try being a 14 year old girl going to a birthday party and can not eat the cake the pizza or the ice cream or drink the coke because you are on HEMO dialysis. After my transplant I gained alot of weight got alot af acne and just felt like crapp. All the people at school would talk about how ugly I had got. They would say things like ( O my god have you seen kristy she is fat as hell). I would get so sad and cry and cry. I would pray at night for god to let my kidneys come back, but of course reality set in. I am now 23 and it is still a hard process to go through. My dad's insurance is going to drop me soon and I am going to have to find someway to pay for my medication. No one wants to insure me because of my kidney problems. I know in the future this kidney I have now will fail me and the next will probably to. I would just like to make it to like 60 so I can say I got there. Life is HARD and sometimes I wonder why am I here? I look at life very different now. Somtimes I love being here other times I don't. I say to myself sometimes I am a 90 year old stuck in a 23 year old body.
Karen,
You are an inspiration. I hope you find health insurance soon.
Sorry to hear about your sister. My sister died years ago of AIDS. She was 31 yrs. old. I was diagnosed with kidney disease about 3 yrs. old. They labeled it as glomerphritisis. I have been married for 13 years and have a 9 year old daughter. There are times when a wonder why I got ESRD, but I did and what could I do about it. I had to continue to live and do dialysis to live.
I am so grateful to the family that donated their 16 year olds' kidney to me.
I can not complain, because I am alive and get to watch my daughter grow up. I have always planned to donate, so it is not as hard to receive. Through this journey, I have found out that I am a strong person. I no longer feel damaged. I feel strong and grateful for life. Keep your head high.
God Bless :-D
You are an inspiration. I hope you find health insurance soon.
Sorry to hear about your sister. My sister died years ago of AIDS. She was 31 yrs. old. I was diagnosed with kidney disease about 3 yrs. old. They labeled it as glomerphritisis. I have been married for 13 years and have a 9 year old daughter. There are times when a wonder why I got ESRD, but I did and what could I do about it. I had to continue to live and do dialysis to live.
I am so grateful to the family that donated their 16 year olds' kidney to me.
I can not complain, because I am alive and get to watch my daughter grow up. I have always planned to donate, so it is not as hard to receive. Through this journey, I have found out that I am a strong person. I no longer feel damaged. I feel strong and grateful for life. Keep your head high.
God Bless :-D
Hi Everyone.
I'm glad there is at least a place for all of us to talk about our experiences with kidney transplants. I had one when I was 13. My kidneys failed without reason. Yes, coping with a transplant can be very difficult and lonely sometimes. No one really gets it unless they've had one themselves. Even writing this brings me to tears...
I had just come across something online that might serve as a reminder of our capabilities even though we feel run down and unable to accomplish much, something that I struggle with daily: texasgulfcoastnursingeducation.org/impact/stories/2005/05DEC19/jimkaufman.htm
Also, I've read "Glamour, Interrupted" by that TV guy Coju and it's very real and uplifting at the same time. Also, Deepak Chopra is a good read, too. I also remember reading an article about a British woman who after having received a kidney transplant, became much more intelligent than before she'd had one!
I gained 60 pounds within 6 weeks of surgery and have had some other undesirable side effects as well as health issues but I am mostly OK. People who are on waiting lists wish they could be us. It's not as if people without kidney transplants have perfect lives either. I can't think of a single friend of mine who isn't suffering depression, or dealing with the loss of a close friend or family member, or wishes they could lose XXlbs, or doesn't have a mother, or has an alcoholic as a father, or has an abusive boyfriend, or is dealing with choosing a religion, or wants to have plastic surgery, or has very low self-esteem, or has just moved to America and doesn't speak English and misses his entire family who is in Sudan enduring a genocide (!), or has his family hate him because of his sexuality, my list could literally continue forever...
The point I am trying to make is that yes our lives are hard, but so is everyone's. Hopefully soon, they will make great scientific advances so that people on these meds don't have to feel so shitty all the time (look at how far they've come so far). I hope I am not coming off as someone who is relentlessly annoyingly positive because I would hate to make anyone feel bad; I know I hate it when people do that. I have managed to surprise myself with what I was able to do after surgery: go skydiving, travel, live away at college, trying to stay active, and even have men think my prednisone cheeks are pretty ;-) You can surprise yourself, too.
I'm glad there is at least a place for all of us to talk about our experiences with kidney transplants. I had one when I was 13. My kidneys failed without reason. Yes, coping with a transplant can be very difficult and lonely sometimes. No one really gets it unless they've had one themselves. Even writing this brings me to tears...
I had just come across something online that might serve as a reminder of our capabilities even though we feel run down and unable to accomplish much, something that I struggle with daily: texasgulfcoastnursingeducation.org/impact/stories/2005/05DEC19/jimkaufman.htm
Also, I've read "Glamour, Interrupted" by that TV guy Coju and it's very real and uplifting at the same time. Also, Deepak Chopra is a good read, too. I also remember reading an article about a British woman who after having received a kidney transplant, became much more intelligent than before she'd had one!
I gained 60 pounds within 6 weeks of surgery and have had some other undesirable side effects as well as health issues but I am mostly OK. People who are on waiting lists wish they could be us. It's not as if people without kidney transplants have perfect lives either. I can't think of a single friend of mine who isn't suffering depression, or dealing with the loss of a close friend or family member, or wishes they could lose XXlbs, or doesn't have a mother, or has an alcoholic as a father, or has an abusive boyfriend, or is dealing with choosing a religion, or wants to have plastic surgery, or has very low self-esteem, or has just moved to America and doesn't speak English and misses his entire family who is in Sudan enduring a genocide (!), or has his family hate him because of his sexuality, my list could literally continue forever...
The point I am trying to make is that yes our lives are hard, but so is everyone's. Hopefully soon, they will make great scientific advances so that people on these meds don't have to feel so shitty all the time (look at how far they've come so far). I hope I am not coming off as someone who is relentlessly annoyingly positive because I would hate to make anyone feel bad; I know I hate it when people do that. I have managed to surprise myself with what I was able to do after surgery: go skydiving, travel, live away at college, trying to stay active, and even have men think my prednisone cheeks are pretty ;-) You can surprise yourself, too.
Oh my god...will it be this horrible after transplant????
is there no way to control the weight gain? or the acne?
I am 17 and I am on dialysis after being diagnosed with endstage renal failure and am scheduled for a transplant soon. I hate dialysis and I hate my doctor! I am so happy and thankful to my mother who wants to donate a kidney to me, i was dreading the rejection issue and the sideeffects But now after reading most of you i am so terrified of transplant!!!
Help...advise anyone? suggestions?......I am sooooooo scaredddd
is there no way to control the weight gain? or the acne?
I am 17 and I am on dialysis after being diagnosed with endstage renal failure and am scheduled for a transplant soon. I hate dialysis and I hate my doctor! I am so happy and thankful to my mother who wants to donate a kidney to me, i was dreading the rejection issue and the sideeffects But now after reading most of you i am so terrified of transplant!!!
Help...advise anyone? suggestions?......I am sooooooo scaredddd
It's normal to be scared but you really will be fine. Transplant technology has come a long way and success rates are very high. I had my transplant 7 months ago and feel great. No signs of rejection and no weight gain. Most people who gain weight after a transplant gain weight because they don't have any food restrictions anymore and over eat. Just watch what you eat and exercise and you'll be fine. There are side effects to various medications but your body will adjust as mine has. Over time many medications are eliminated or reduced and the side effects become less and less of a problem. I met a 17 year old recently at the transplant center who had had a transplant one week earlier. I couldn't believe how good she looked and how mobile she was. I was 51 when I had my surgery and I think initially it was harder on me. But you'll do fine. Think positive. By the way, you are fortunate to have a live donor, your mom. I got a kidney (for which I am thankful) from a cadaver and it took three weeks for it to begin working. That's not unusual but a bit scary. My brother had a live donor kidney and it started to function immediately. It was only a 2 out of 6 antigen match but he's doing great. I wish you the best.
Wow...thanks Jessily.....i feel better.....and youre right I have to stay positive something about making the best out of what life throws at you...I have to make sure that i dont get sucked in despair or any emotion just as destructive...I'll eat healthy and I'll excercise...I can go to a skin specialist to take care of the acne and the scar will just be a cool memento....Your post helped....Thanks!!!!..=D
I am go grateful for finding this website. You are all listing the side effects of the medications that I, too, am going through that none of the doctors or nurses want to hear about. The depression is the worst side effect for me. I know, and am trying, to adjust to this new life of restrictions and mental thoughts weekly of just ending all of this. I don't know how long I can continue to keep giving myself pep rally talks. Friends and family just don't understand what I'm going through and wish I would hurry up and snap out of it. I'm trying to do just that, but how do you overcome the numerous and powerful medications with "depression" listed as a side effect? I'm taking Lexapro (antidepressant) and for me there are very little side effects. They have diagnosed me with Post Traumatic Stress Syndrome from the ESRD, PD dialysis, Kidney Transplant, and Bilateral Neprectomy with ureter repair of the transplanted kidney.
My body weight has shifted so that I look like a female wrestler, my stomach is bloated and severely distended. My hair is falling out, my face and eyes are bloated beyond me recognizing myself anymore. How we look goes hand-in-hand with self-esteem. If this means being vain, then there are many of us who fit the description.
I''m nauseated at the end of every day, and have unbelievable insomnia that no medication seems to help (another side effect of these drugs). I have stamnia and fatigue problems. I keep getting numerous UTI's since the transplant surgery in Jan of 2008. I've had to have another surgery 3 months later where they removed my native kidneys and used my right ureter to repair the collapsed transplanted one. I was refused pain medication after two weeks post-surgery with a young doctor saying I didn't need anymore pain medications and would have to "suck it up" pain-wise. It's funny how easy it is to speak up when you're not the patient. It's a whole different story when you depend on these health professionals to do what's in your best interest. I feel so very dehumanized and frightened of what the future holds for me with the medical professionals.
It just feels good to get all this off my chest, as I can't speak this way with family or friends who havn't gone though this themselves. They just don't understand, or worry that they are responsible for fixing things for me.
Thanks to all of you for posting truthfully and from your hearts.
My body weight has shifted so that I look like a female wrestler, my stomach is bloated and severely distended. My hair is falling out, my face and eyes are bloated beyond me recognizing myself anymore. How we look goes hand-in-hand with self-esteem. If this means being vain, then there are many of us who fit the description.
I''m nauseated at the end of every day, and have unbelievable insomnia that no medication seems to help (another side effect of these drugs). I have stamnia and fatigue problems. I keep getting numerous UTI's since the transplant surgery in Jan of 2008. I've had to have another surgery 3 months later where they removed my native kidneys and used my right ureter to repair the collapsed transplanted one. I was refused pain medication after two weeks post-surgery with a young doctor saying I didn't need anymore pain medications and would have to "suck it up" pain-wise. It's funny how easy it is to speak up when you're not the patient. It's a whole different story when you depend on these health professionals to do what's in your best interest. I feel so very dehumanized and frightened of what the future holds for me with the medical professionals.
It just feels good to get all this off my chest, as I can't speak this way with family or friends who havn't gone though this themselves. They just don't understand, or worry that they are responsible for fixing things for me.
Thanks to all of you for posting truthfully and from your hearts.
I'm also truly grateful to find this website. I had my transplant on April 5 2007. I want to say my whole situation is a little different because on Jan 20 2007, I lost my husband in Blackhawk helicopter accident in Iraq. Not only have I lost the love of my life but I’m totally depressed and angry all the time. I’ve never had any type of rejection but my hair is thinned out, and some acne issues and of course dealing with the weight gain.
I must say that I’m humble and very much grateful that I was only on dialysis for only couple of month thanks to my loving brother. I must say that the Army has been very supportive to me and my family during my ordeal.
Thanks for listening.
Easy40
I must say that I’m humble and very much grateful that I was only on dialysis for only couple of month thanks to my loving brother. I must say that the Army has been very supportive to me and my family during my ordeal.
Thanks for listening.
Easy40
I just received my transplant at the end of May. I weigh 75 kilos then. Everyone kept saying I had lost a tremendously amout of weight since I started dialysis 2 years ago. Now, after transplan, I weigh 95 kilos and it keeps creeping up. I am depress and wish I never had my transplant. My body is a mess with scars, scars on my left arm from the fistula surgeries. I feel horrible. I cry everyday. I'm reluctant to leave the house because of how fat I have become. My life is hell and I don't think it will get better. I am suicidal even. This is a nightmare!
My heart goes out to you as I've been at the edge many times myself and know exactly what you're feeling. I, too, don't want anyone to see me looking like I do, and have many times regretted having this transplant. No one warned me about the serious side effects of this anti-rejection medications so I could have prepared for what I'm now going through. I happen to be particularly sensitive to these drugs and, as a result, have almost all of the side effects with each medication I take.
Give yourself at least one year from your transplant for your body to adjust more to the medications and what its been put through, and then see how you feel. It's the best advice that's been offered to me and one that keeps me going.
Please hang in there for at least one year, and I'll be thinking of you often and hoping that your life gets a little better with each month that passes.
Give yourself at least one year from your transplant for your body to adjust more to the medications and what its been put through, and then see how you feel. It's the best advice that's been offered to me and one that keeps me going.
Please hang in there for at least one year, and I'll be thinking of you often and hoping that your life gets a little better with each month that passes.
I had my transplant on MArch 19 of this year. I got it from my incredible older brother. I have scars all over my stomach and chest from transplant and chest and stomach catheters. I spent 11 months on diaylsis and it was the worst time of my life. I endured two stomach infections that almost killed me while trying to start PD. I stuck with hemo and was chained to a chair 3 times a week for 5 hours a day. I put on some weight and have acne also. I WOULN'T CHANGE IT FOR THE WORLD. I love my new kidney and the freedom that comes with it. I just got back from the Grand Canyon and am very thankful that I was able to see it. I could never have gone if I was on Hemo. You have to take what life throws at you and run with it. The meds mess me up, I shake and have mood swings, but I get out of bed everday and love not having to go to diaylsis. If it doesn't kill you, it makes you stronger. Kidney disease sucks. But I am thankful that the technology exists to keep us going. Just think, if we lived 80 years ago, we would be dead because transplant and dialysis didn't exist. Thanks for letting me get this out!
LOVE LIFE!!!
LOVE LIFE!!!