hi everyone i am 9 months after kidney and pancreas life has turned around for me so lucky to have had this transplant life was so restricted before although i have to say has been hard the weight gain depression and anxiety due to meds we need to take however i look at it as a small price to pay we have been given the gift of life we must remain positive and tell ourselfs and our new organs that we will work together and we will be well and strong do all that you can to assist your body to recover and maintain a healthy life i have written a story if you want check it out is on my name is hege igesund
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***edited by moderator*** web addresses not allowed
I have been looking for a place where people chat about their experiences with transplant good or bad. I am almost 4 months post-transplant...kidney/pancreas. I was on home hemo dialysis for 29 months, 5 days a week, and a Type 1 Diabetic for 34 years. Although both organs seem to be working beautifully I can relate to what a lot has been said about the meds, the depression, the resentment and etc. I am conflicted a lot of days because I had an expectation that my life would return back to before my kidney failure and am realizing it hasn't and may never. I am disheartened that my energy in not only not back, but less then while on dialysis. I am normally very strong, but the depression is overwhelming. I am very grateful for my transplant because it did save my life and got me off insulin and dialysis, but can't help but feel a little lost over the whole situation. I didn't even know that there was post-transplant depression...no one thought to share that info with me.
everything you said is how i feel....i feel that this is a curse i know that i have life again but im never happy never.... i had my transplant when i was 18 and im 20 now. you are not alone alot of people feel how you do.
Hi!
Seems that the key is missing dialysis out. I had a living donor transplant (not through choice but too wimpish to stand up for what I wanted!!) 18 months ago and also have difficulties dealing with it. Many, many people and doctors (and interferring relatives ;-) ) have told me I don't know how lucky I am to have got this but without them being in my shoes I'm not sure.
I work full time (and did right up to the transplant) and have children. I have had this disease for 25 years but the docs managed to slow it down to let me get on with life!! I made my plans and was fully prepared for dialysis and waiting. Long story cut short - I was in hospital for 5 days after the transplant and back at work 6 weeks later. I needed to get back to where people didn't 'ahh' and 'poor thing' and 'you lucky girl' me all the time - I feel sometimes like a relative's kidney on legs - I have ceased to exist to some folks!! I have set up my own coping mechanism - I avoid those patronizing relatives and people and stick to true friends who know I'll bite their heads off if they mention it!! I find I actually like my own company sometimes ;-)
Health wise I'm not brilliant - before the transplant I was tired but no other symptoms, I ran, walked and did all the usual stuff. Now I have breathlessness, tummy problems and often don't see the point in carrying on. My Kidney function was at 10% before the operation and is at 30% now.
Mostly I resent myself for letting other people push me into what they wanted me to do. I still 'run' (stagger between points like a crazy drunk woman!!) and having young children I don't get much me time. I have to carry on but now worry as I've been told this kidney isn't brilliant - 5yrs probably and I'm 18 months in!!
I truly believe that if I had followed my plan and gone onto dialysis, I would have had more time to adjust mentally to what was coming and how I would deal with. It would also have helped if doctors told you all possible outcomes and problems - indeed if anyone had spoken to me at all!!! And yes - it might have changed my post here to - oh you really don't want to be on dialysis - I understand it's horrible but as a person that does things to learn I feel it would have helped me maintain my positive outlook instead of realizing it's all a game of strength of character and bums on seats. You have to experience the downs to appreciate the highs.
What's done is done, friends and relatives lost, but my little family and I are cracking onwards - next time it will be my wishes that prevail - I will not be weak again.
:-D
Seems that the key is missing dialysis out. I had a living donor transplant (not through choice but too wimpish to stand up for what I wanted!!) 18 months ago and also have difficulties dealing with it. Many, many people and doctors (and interferring relatives ;-) ) have told me I don't know how lucky I am to have got this but without them being in my shoes I'm not sure.
I work full time (and did right up to the transplant) and have children. I have had this disease for 25 years but the docs managed to slow it down to let me get on with life!! I made my plans and was fully prepared for dialysis and waiting. Long story cut short - I was in hospital for 5 days after the transplant and back at work 6 weeks later. I needed to get back to where people didn't 'ahh' and 'poor thing' and 'you lucky girl' me all the time - I feel sometimes like a relative's kidney on legs - I have ceased to exist to some folks!! I have set up my own coping mechanism - I avoid those patronizing relatives and people and stick to true friends who know I'll bite their heads off if they mention it!! I find I actually like my own company sometimes ;-)
Health wise I'm not brilliant - before the transplant I was tired but no other symptoms, I ran, walked and did all the usual stuff. Now I have breathlessness, tummy problems and often don't see the point in carrying on. My Kidney function was at 10% before the operation and is at 30% now.
Mostly I resent myself for letting other people push me into what they wanted me to do. I still 'run' (stagger between points like a crazy drunk woman!!) and having young children I don't get much me time. I have to carry on but now worry as I've been told this kidney isn't brilliant - 5yrs probably and I'm 18 months in!!
I truly believe that if I had followed my plan and gone onto dialysis, I would have had more time to adjust mentally to what was coming and how I would deal with. It would also have helped if doctors told you all possible outcomes and problems - indeed if anyone had spoken to me at all!!! And yes - it might have changed my post here to - oh you really don't want to be on dialysis - I understand it's horrible but as a person that does things to learn I feel it would have helped me maintain my positive outlook instead of realizing it's all a game of strength of character and bums on seats. You have to experience the downs to appreciate the highs.
What's done is done, friends and relatives lost, but my little family and I are cracking onwards - next time it will be my wishes that prevail - I will not be weak again.
:-D
I recieved my first trnsplant in 1986 at the age of 26. I woke up from a coma, not knowing what happened and told that I had survived a 2-5% chance of living.
The kidney tha I recieved was from a cadaver and lasted 22 years. My cousins wife donated a kidney for my second transplant a few years ago. She is my angel.
I am so sorry that anyone has not had a good transplant.
Dialysis is excistance not life.
I was never told tha IF you choose dialysis that your life expectancy is cut in half as long as a transplant recipient.
I know that it can be hard but life is not easy. FIGHT for every breath.
The kidney tha I recieved was from a cadaver and lasted 22 years. My cousins wife donated a kidney for my second transplant a few years ago. She is my angel.
I am so sorry that anyone has not had a good transplant.
Dialysis is excistance not life.
I was never told tha IF you choose dialysis that your life expectancy is cut in half as long as a transplant recipient.
I know that it can be hard but life is not easy. FIGHT for every breath.
Hey there dont let your self get worked up and worried.
These issues "may arise" but it doesnt always happen. Keep an open dialouge with your docs. YOU are in CONTROL of your health. ASK QUESTIONS, MAKE INFORMED DECISIONS. ASK ASK ASK.
AS with your pre transplant general meeting they go thru the worst case scenarios. AS are most of these postings from folks that have had difficult transplants. I have had two kidney transplants. Take your meds as prescribed IF they cause issues STAND up and make your doctor answer you. YOU can fire your doctor.
Depressioon IS a factor and it depends on how you are able to handle it. Everyone handles it in their own way. I would take ALTITUDE adjustments. Get a change of scenery. Meditate and let yourself know that it will get beeter after some point in time. KEEP your mind busy. Little kids with their energy and honesty are GREAT to be around, their natural curiosity and acceptance is great. Their honest laughter can heal you as well. PET a dog. SMELL the ROSES. Taste life.
Do NOT be terrified.
These issues "may arise" but it doesnt always happen. Keep an open dialouge with your docs. YOU are in CONTROL of your health. ASK QUESTIONS, MAKE INFORMED DECISIONS. ASK ASK ASK.
AS with your pre transplant general meeting they go thru the worst case scenarios. AS are most of these postings from folks that have had difficult transplants. I have had two kidney transplants. Take your meds as prescribed IF they cause issues STAND up and make your doctor answer you. YOU can fire your doctor.
Depressioon IS a factor and it depends on how you are able to handle it. Everyone handles it in their own way. I would take ALTITUDE adjustments. Get a change of scenery. Meditate and let yourself know that it will get beeter after some point in time. KEEP your mind busy. Little kids with their energy and honesty are GREAT to be around, their natural curiosity and acceptance is great. Their honest laughter can heal you as well. PET a dog. SMELL the ROSES. Taste life.
Do NOT be terrified.
I would just like to say that it is very therapeutic for me to read all of the different stories. I received a transplant from my husband in July 2010. I was on dialysis for a little over a year, 3 times a week. I dealt with it, and could not believe that he was an exact match for a transplant. Been together 42 years, guess that is kind of the true meaning of soul mate. Anyway, am experiencing thinning of hair, it started changing while I was on dialysis. Fortunately I have always a ton of it. However my natural curl is gone, it is straight as a stick now, and I blame that on the medications. I also have to face the reality of some weight gain. Had a Dr. appt. yesterday and he told me it is "22 pounds" - yikes! I have always been a size SIX. I knew I put on a few lbs., but 22 depressed me. So maybe these are a few tales of my woe, but I thank God every day that I have been given this new gift, and just smile at my husband all the time. I am truly ,loved. My purpose now is to work harder than hell to change my eating habits (because that is part of the gain), and to become more active than ever, as I am just starting to feel like I did before I got sick, because I forgot what that felt like. And No matter how bad I did feel, I know people that were worse off than me. I'll let everyone know when and how I got back to size 6.
Renal tranplants are sh*t. I had mine in 2006 and it was the worst thing i've ever done. We'd all be better off dead. If your kidneys don't work get out of the gene pool
My transplant changed my life. Im so sorry you feel that way, but I would go through surgery and take a few pills each day rather than dialysis 12 hrs a week any day. Why do you feel its the worst thing you've ever done?
I'm glad yours is working out, I really am- i wrote that while i was drunk
This transplant saved my life- I had lots of access problems and any further dialysis would be problematic. problem is i keep thinking how much easier it would have been if I had died.
Well its always easier just to die but so much better to be a living miracle with a new life to live, and shows a much stronger person. Its hard. It truly is. I struggled with sickness for 7 years before it ended in the result of kidney failure and a transplant. Although its been a struggle I try to just enjoy the fact that it could be worse. No one really understands what we've been through but us and thats one of the hard parts also. Just try to keep your head up. Accesses for dialysis are definately a pain in the butt. I think I had more surgeries for that then everything else put together. No fun. Just take care of the kidney you have. Do what the doctors say and live each day like its your last and try your best to enjoy it even when it seems annoying and hopeless. How is your kidney doing?
What I wrote was awful and I apologise. There is nothing wrong with the kidney-the problem is me.
It works very well. I work full time in a demanding job, I have lots of friends and an active social life. Some of the side effects of the meds are not great but when people find out about my illness (I did 6 years on haemo) they can't believe it as i lok the picture of health.
But I feel like rubbish inside. I'm on antidepressants and I thought they were working, but something upset me last night and I start up all this wish I was dead/had never had the kidney stuff. Would serve me right if it did fail
no way! It is never fair if it fails on you. We have our moments. I've been with my boyfriend for the 7 years I've been sick. We met about 6 months before and has he had to deal with the wrath of me sometimes! Its a given that we get depressed and say stuff we really don't wish. I totally understand where your coming from. Im actually only 24 years old and all this stuff had ruined my senior year of high school and really till this day it still bothers me. Kidney failure SUCKS! Just as simple as that. But, Im glad your kidney is doing well. I've had mine for 9 months now so I hope it continues for the rest of my life. I will out run the odds!
I got my kidney on Nov.1,2010. After the transplant, I was doing ok. Now I am getting depression. I have know one to talk to. My life is so upside down now. I dont feel good anly more, The Dr.s keep playing with my meds. It help some, but I still down fell good.
Oh wow, we are about the same time then Debbie. I got my transplant feb. 11th 2011. We are just a few months apart. I definately know how you are feeling. It sometimes feels like an endless battle but all we can do is keep on trucking. My I guess they say for the 1st year things will be changing a alot and often. I have depression too. It definitely sucks. But, as hard as it is we just have to keep trying to enjoy the days we have that we do feel good and remember that dialysis SUCKED!