1Hello, I had a kidney transplant 2 yrs. ago and never felt better. I have a great healthcare system and my positive attitude is a must. I felt so bad for 19yrs. and now I feel normal, again. I am also taking Prograf but have no ill side effects, getting the correct dosage is a must. Always talk to your doctor as I do, let him know exactly how you feel. I also exercise, everyday, it not only helps the body, it helps the mind, too. My family has been by educated about me but if you want to know the truth I'm happier than they are and most of the time I have to lift their spirits. I had a life changing experience but I NEVER gave up. My journey wasn't a easy one and I'm still have my bad days but I do all of the above and I keep going and enjoy this great thing called "LIFE."
Thank you everyone for your posts. It is so nice to know that you are not alone. My fabulous husband gave me one of his kidneys 2 months ago. Like some of you, I felt fine before the transplant except the last 6 weeks or so. Then the nausea hit. I feel SOOO guilty about not being happy and upbeat all the time. I've been in and out of the hospital, had diarrhea for two months (have pooped my pants so many times I can't count), the shakes from prograf, strong antibiotics for weeks to fight the C-Deff I've contracted, etc., etc., etc. I know I am soooo lucky to be alive, blessed with family, friends, etc., but I get so tired of feeling sick. My husband is the most wonderful person in the world. And although he has recovered fine (after a rocky start), I hate the thought that I may have hurt his health and shortened his life. I know, I know.... Kidney donors have no long term side affects (in fact, he gets to go to the front of the list if he ever needs a kidney transplant). But what if his health is sacrificed because of me? Pre-Transplant, I was never a worrier, complainer, or depressed. Now I don't recognize myself......
i was on hemo for 6 years it was hell i wanted my life back so badly but was scared of having a transplant was on the waiting list for 4 yrs then my partner gave me his incompatable kidney to me after i underwent the plasma treatment had a very bad feeling about going ahead but felt i had no choice my partner even said he would leave if i didnt go though with it so i had the transplant and it almost killed me i had internal bleeding and died for 20 mins intensive care had a heart attack and blood clot on my lung lost the kidney then 2 more yrs of hell on hemo then 8 months ago i got the call and had a transplant that has worked as well as can be expected was like winning the lottery at first but like a lot of others the depression has kicked in ive just cry my eyes out reading all your post and i thank god for them because i thought i was so selfish feeling this way but now i see im not the only one
i had my transplant 3 years ago, but i never felt like this. Every little thing is getting to me now, want to cry all day. Feel terrible and guilty because i got a change to life.
i felt the same i cried all the time was hell to live with i would have fits of rage started smoking again and felt so discusted with my self for being such a selfish person when my donor has lost his life and given me a new one and now all i could do was complain my renal consultant told me this was not due to the drugs but when found these post on here i knew i was right my gp agreed and said she had worked on a renal ward and saw this time and time again she has now put me on sertraline and im really feeling the differance after only 3 weeks its a great to now feel so calm now things dont get to me as much i hope this may help some of you
My husband had a transpland almost 2 years ago. At first things were great. For the past year he has changed so much. I almost dont recognise him anymore. He is always angry, always snappy, he went from socialising with people to not wanting to do much. It is driving me insane. The biggest problem is, he doesnt realise or admit to his behaviour. He has become this hard person that I just dont know anyore.
These meds are very depressing and 5 months in a lovely sanitorium in a tropical setting natual fruits foods lack of stress ”Costa del Sol? Or battling health INS companies & trainer should be required.
3 years is a good point, 1st year I was numb, saw people kissing & couldn't comprehend it
We all must fins our ways even Transplant meetings I feel most hid true feeling in front of hospital staff. The problems are, endomirphins (I know) are decimated bodys happy chemicals.
Anti depressants are poison 100% but protocol. If the island (mood) lowering the ocean don't help. I went to a doc whi has (immuno supressed) patients because Im voluntarily supressed rejection meds.
My friend takes rappamune says hes much better than cekkceo, but rapamune is new & for special cases Mayo Clinic pioneered it.
My doc gave me testosterone & it helped & I was low because of job toxins etc 1600 is upper normal level, but doctor groups fear ir & scare women from natural estrogen (only artificial estrogens have shown bad effects! Doc said 1600 being upper level why do they let you live with 185? Low end? 800 would be 1/2 way
The neuro-endocrine is damaged ”happys”
Metaphenocaelin is our natural
Im thinking also a low protocol of hgh not to raise immune system, will boost mood & does, but media is filled with scare storys. All related to ”massive overdoses”
So in here are keys as well as exercise! It pushes med thru you &raises endorohins
But how to force youself to exercise? Why I know a trainer & some caring people can help. But that I feel is in another culture maybe Latin American where it iss not only money.
I am looking and the following story epitomizes the situation. Hector my Spanish only speaking friend told me his pal 80 years old was told to die here in USa needing a heart. Seems normal right? But in Columbia he is now 93 and happy! Hmmm?
Good luck 2 years is the beginning & gets better.
Someone cared enough to donate their organ to you!
It is hard to read these posts. I had a kidney transplant one year ago. I don't know how people could think that it was better on dialysis or with kidney disease. The ony good thing about before I got the transplant was the mass amounts of prednisone that my doctor had me on for a little while. I never slept and felft great. Now the only issue is that I got a little fat and need to get back to working out. My dialysis was a nightmare. They put the pd catheter tube in the wrong spot and I had massive pain every time I tried to do it. The liquid spilled into my scrotum. Luckily I was only on dialysis for two weeks before the transplant. There are issues with the meds but they are not a big deal, just twice a day. Only other issue is that I am a little mishapen. My one side pushes out a little.
Still, this person gave me a kidney and I feel grateful every day.
I was diagnosed with kidney disease at age 20 and have had two kidney transplants. I was a healthy athletic guy (or so I thought) and went for a routine physical for a summer job I got and the doctor diagnosed me with "Nephrotic syndrome"I had the first transplant when I was 24 and it gave me the opportunity to go back to college and finish graduate school and build a great career but 12 years later when my kidney transplant failed (and they all do) I lost EVERYTHING I had worked for. I was fired from my job almost immediately which my boss called a "layoff" and blamed the recession. YEAH RIGHT! I hired a lawyer and threatened to sue them and they gave me about $100K just to get rid of me. Of course the lawyer got almost half of that and the rest went to pay bills.
Due to the current state of the economy even young healthy people can't find jobs, much less a guy who is over 40 and has a chronic medical problem, and no recent work history due to being on dialysis and having a kidney transplant. Now, after being on disability for four years the Social Security Administration has decided that I am no longer disabled and cut off my disability benefits and my health insurance through Medicare. How they think a guy who has had two kidney transplants, has steroid induced osteoporosis, suffers from major depression, and can't lift anything due to a repaired incisional hernia is capable of working is beyond me.
The only health insurance I can buy with my health history costs nearly $1,000 a month. I am over 40, have no income, and few options since I can't find a job that provides health insurance. If some of my family members were not letting me live in a house they own rent free I would be homeless and living on the streets or in a homeless shelter.
I have developed major depression due to the prednisone and it makes my previously diagnosed ADHD so bad that I cannot focus on anything, and I also have insomnia. My mood swings that I can't stand being around people and prefer to just be alone. Oh yeah I have never had a sexual relationship either. At age 20 I was just beginning to realize that I was gay which I thought was the absolute worst thing that could possibly ever happen to me (BOY WAS I WRONG!) when I was diagnosed with kidney failure. Since gay men are NOT attracted to men with fat bellies, moon faces, and acne, not to mention multiple surgical scars my homosexuality quickly became a moot point anyway.
When the small amount of savings that I had put away for "retirement" during my short career is exhausted I have no idea what I am going to do. I will not longer be able to afford groceries, much less my transplant medications. If I had known what was going to happen I would not have gone on dialysis or gotten on the transplant list when the first kidney failed and just gone straight into hospice and died. Since euthanasia is not legal here in this backwards ass country, I am seriously looking at possibly going to the Dignatas clinic in Switzerland while I still have the money to afford a one way ticket to Europe.
I am just tired of this endless BS of hospitals, doctors and pills. All I really have to look forward to is a life of poverty, infirmity, and barring some sort of stem cell miracle that can create a kidney I won't reject and fix the damage that prednisone has done to my body over the past two decades...a very premature death.
I am so sorry Karen I just lost my husband of 13 yrs to suicide this week. everyone is in shock it too was sooo not like him we have 3 children. at the end he was seeing and hearing things and we were waiting of a bed to open up so he could get help. I will we know that this could happen I don't remember the doctors saying anything maybe if they did I could have saved him.. he was everything and I can even breath now. again I am so sorry if u every need to talk my e-mail is
or face book andrea smith
I know this post was made quite some time ago, but I hope you are feeling much better now. I stumbled along into this chat just trying to find someone I could relate to. I was diagnosed with ESRF when i was 29 years old. My function was in the mid to low 20% range, and I was told dialysis was inevitable. So I went about my life, I had 3 children to take care of. Finally in 2012, my disease began to take a toll on me. I never really research kidney disease, didnt know any of the effects. All I knew, was that I was extremely tired ALL THE TIME. At first I attributed it to working full time, taking care of my whole home, taking care of 3 young children. But I was only 31, I knew I shouldnt have to take at least 2 naps a day to make it to 10 pm. So on a whim, I made an appointment with my PCP and thats where I discovered my function was around 7% and that I should be making an appointment with a nephrologist. I placed myself on the donor list, and got prepared for peritoneal dialysis, but found out I was too uremic for the surgery. So emergency hemodialysis was my fate. Luckily, God blessed me with an amazing husband who was a match for me, and he gave me my life back on September 12, 2012. I was basically healthy aside from my kidney disease, and healed very quickly. I was home in 4 days, my swelling and water retention went away consistently over the next 3 weeks, and I felt so much better over all. I was already taking blood pressure pills and multivitamins, so the anti-rejection meds didnt faze me too much. I guess the downside of my transplant comes in with everyone thinking I'm "back to normal". Like no one realizes I just underwent life altering surgery, my life has been changed for ever. I get no help around my house, I do it all. If I complain about anything, I have everyone looking at me like I must be the absolute luckiest person in the world. Its good to find out that the prograf is whats making me so shaky and down. I never knew that. My attitude is always blah, and it effects my husband, because I guess he thinks Im angry with him, when really I just dont find excitement in much. Im cranky and irritable constantly and I just have no more patience. And I have to sit and think about all these thoughts, about how great other 30 somethings life must be that dont have this disease, and why did it happen to me? All to myself. I have no one to share my feelings with so it stays bottled up inside, and it takes over sometime. I know I have more to be thankful for that to be upset about, but its hard going through this with like zero support.
I received my Kidney/Pancreas Transplant in 2006 after dialysis for 3 years 2003-06. Dialysis was horrible and I cringe to even think about it or to drive anywhere near the dialysis center. I got on the list a few days after I began dialysis and began praying for the one who would die to give me my organs. This was very hard for me to accept would happen to someone who was alive at that time and would be dead when I received their donated organs.
I made several appointments with the surgeon and begged him for my transplant then one night after 3 years at 10pm I received the life changing call.
The next morning I awoke to have 56 staples much pain, drowsiness, nausea, tubes, and a new life.
My first thought was if I had know about all this I would have passed on the transplant. Then I cried for the one that died for me to be here. I immediately decided that I was going to go home as soon as I could and 4 days later I did. I traveled 145 miles to and from LA 30 times in the first month to see my surgeon.
Then I begin to have cravings for food and drinks that I never liked before and to hate things that I used to love.
Suddenly I developed big burning painful ulcers in my mouth and esophagus that was so bad and so painful I could not eat or drink anything at all. I cant even begin to describe the pain that I had and was in and out of the hospital back and forth. I was put on home IV's for feeding because I could not eat or drink anything. I had to swallow my anti rejection medications and screamed and cried from the pain. I laid in bed 24 hours a day for 2 weeks on my feeding tube IV's only getting up for a doctor appointment. I was taking morphine, narcotics along with patches and pain medications but to no avail.
I asked the doctors to put me in a deep sleep. When they said no I begged them to let me die.
After 4 months of this, so skinny, low iron and vitamins the ulcers began to go away very slowly and I finally began to eat.
Then one evening about 3 days later I awoke to use the bathroom, stood up and passed out hemorrhaging blood from my bowels.
I awoke at the ER to my physicians voice asking me what happened. My blood work showed that I was bleeding internally and I had to have 4 pints of blood. After I came home I had to return to the hospital 3 days in a row for Iron IV's.
Then the doctors discovered a hernia. I was sent back to the surgeon that said I needed surgery that would be an out patient procedure.
I was prepped for surgery as an outpatient and awoke with 57 staples again. The surgeon had to fix multiple hernias completely along my stomach.
After I recovered I had to have a kidney biopsy, which was very painful.
Since everything that has happened I have gained much weight and cannot in any way shape or form lose it.
I am and have never been a big eater. I hardly eat at all and I hate sweets due to being a juvenile diabetic for 32 years before transplant. I hate water although I can drink flavored water. I hate soda but love coffee.
I’m over active, hyper and cant be still and yet I am now fat.
I have been seeing a dietician to no avail.
today i am doing very well 13 years into my transplant.
I have only touched in this post a few things that I wet through because it would take a lot of writing if I told everything.
I just lost my sister who was on dialysis for a long time and i have been going through quite a lot of stress and grief.
She left me her two disabled children to look after along with my Mother that I look after who is 78yrs old now.
I want to sum up everything in a few words. I am so happy to be alive and am alive for a reason and am thankful that I am.
I am very thankful for my transplant no matter what I went through and I thank God for giving me one.
Would I go through this all over again? YES I WOULD :)
I know what you are going through is hard as I've been there and still am. I am post kidney/pancreas transplant.
We will never be the same in many ways after dialysis and transplant but we can move forward and have a wonderful life.
I suggest that you take one day at a time just as I do. Have you tried to call a counselor just to have a day to talk?
There are also several church counselors that are there to chat with.
Is there a group in your area for post transplants. It is very important that you sit down and chat with someone to release all of your stress. If you don’t have anyone I am always here. Just drop me an email or a line. Barb J