Is there anyone out there who wishes the... - Kidney Transplant

Kidney Transplant

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Is there anyone out there who wishes they didn’t get the transplant and would have just stuck to dialysis?

MTgirl2828
MTgirl2828

I’m 25 years old and I’ve had kidney failure for a year and a half now. I’m going to my transplant center to start testing in about 2 weeks and they sent me some videos to watch before coming. After watching these videos I’m questioning if transplant is even worth it? seems like so many complications & life doesn’t seem much better after transplant than it is with dialysis. I’m use to this life now and i don’t want to go through some more crazy and not feel better in the end!

Ps very thankful I found this page!

43 Replies
oldestnewest

Hi! I’m 26 years old and i was diagnosed with CKD at 19 yrs old. I started peritoneal dialysis at 24. I was lucky enough to receive my transplant July 28th 2020. When they started tking to me about transplant, complications and meds, it freaked me out. I’m a nurse and not much freaks me out. I thought well i’m better off on dialysis. I was doing it at home at night and could work full time! It was relatively easy.

When i talked to my parents about it, my dad told me ‘’ you think it is easy because you’re in it and have gotten used to it. But think of all the little and big things that you can’t do because of it.’’ And he was right. My transplant is a blessing i didn’t know i wanted. I can now take a bath (i couldn’t because of the catheter in my belly) i can travel without having to carry soooo much equiment, i can go to bed whenever i want since i dont have to be plugged in for 10 hours. It is soooo liberating to be able to be healthy.

As far as the surgery went and recovery, it has been a breeze!! Everything went perfectly and no complications what so ever. They have to explain all the risk and complication possibilities. But you are 25 years old! Which helps so mich to lower conplications. And you have your hole life in front of you. Trust me it is worth it!!

Hope it helps. Don’t hesitate to ask me questions or just to talk :)

Amy

Tahmed251
Tahmed251 in reply to Amyb93

I am glad to hear you had a positive experience with your transpalant but everyone has a good life after transplant. After having a kidney transplant I am having so many new complications from the medications that I am finding it impossible to live a normal life and I am almost 2 years post transplant. The doctors promote transplant always and make it seem like it's the best thing ever but in reality that is not the case. Transplant experience varies from patient to patient and we cannot say everyone's experience is the best and life changing. But I am glad your experience is going well, best of luck with the kidney.

WYOAnne
WYOAnneNKF Ambassador

A day doesn't go by that I am not grateful for my transplant! I had my Gift of Life in 1999, so has almost been 21 years now.

My transplant has enabled me to travel, hike in the mountains, work full-time, go on a trip with friends at a moments notice - Saw my daughter's' graduate from college, marry and now I have a couple of buddies (my grandsons). Without my transplant I would have missed out on so much.

I am leading a good life. For me, I could not even imagine being on dialysis for years and years. The only thing that reminds me of my transplant are my immunosuppressant meds I take twice a day and my quarterly labs. I am free to come and go as I want, eat what I want, and go any where.

Yes, sometimes there are complications, but it's that way with dialysis too. The first year after my transplant my meds were adjusted several times and some issues till I got on the right dose. Only you can decide what is right for you! If you have any questions for me, I am here...

I have also been trying to give back. I am an Ambassador for the NKF on this site, a Peer Mentor for the NKF and a volunteer and speaker for the Donor Alliance of Wyoming. It's my way to say thank you for my wonderful GIFT.

Take care!

maximina
maximina in reply to WYOAnne

Your message is so uplifting. My son is presently on Peritoneal Dialysis. On the wait list for over a year. We pray and hope that some day we get that call that there is a gift of life for him. He has an autoimmune disease that affected both of his kidneys. He is very positive and hopeful and waiting to have that chance of having a normal life. Thank you so much for your story. It really touched me, I will copy and paste it so that my son can read it. May God continue to bless you and your family.

WYOAnne
WYOAnneNKF Ambassador in reply to maximina

Thank you so much for your kind words!

God bless you and your family also! Let us know when your son "gets the call."

We are here if you have questions...

Maddisson
Maddisson in reply to maximina

@maximina was the auto immune disease Crohn’s?

maximina
maximina in reply to Maddisson

Maddisson: My son's autoimmune is FSGS (Focal Segmental Glomeru Sclerosis) neph said it was IDIOPATHIC (unknown cause?) He was tested for everything under the sun to find out if it was secondary, but it was determined based on the labs that my sons' FSGS is PRIMARY. He was diagnosed when he was 29, he is now 36 and on the wait list for a transplant. We were told that there is a high percentage that FSGS may return on the transplanted kidney, but my son is anxious to receive a new lease on life.......Blessings to you Maddisson.

3kidney
3kidney in reply to maximina

I was 22 when I was diagnosed with FSGS also. 10 years later I was blessed with my “Little Miracle” donated by my cousin. My kidney function is great even after having been hospitalized with COVID in early July.

On July 17, 2020, I celebrated 12 years of having my gift. Your son’s gift will come. We are for him and for you.

God bless you.

I am nearly two years post transplant. I was fortunate enough that I had a living donor, so I was able to avoid dialysis. Besides the medications and the doctors visits, not much has changed in my life today compared to my life before kidney failure. If I had to do it over again, I wouldn’t change a thing and I would have the transplant. I know it sounds scary, but please don’t be afraid. Ask lots of questions from your transplant center - they will most likely be able to connect you with a “mentor” who has gone through the process who can answer other questions you may have. Good luck!

my thoughts were same betore transplant... i was scared as helll

I have done everything that i can be cured without transplant...

I was on dialysis for 3 yrs... till 2 and 3 months i was not even planning for transplant but in june 2016 my body start reacting towards the more side effects of dialysis.. (body pain is normal which I was suffering from starting)

but this time I got so weak and my hand always shiver even my body started shivering and its not from cold or something .. done tests and then goto neurologist.. that time I was so scared and can't even come full time of dialysis..

So we planned for transplant ... and I was luck in march 2017 I got transplanted...

But after transplant ,my life changed like miracle... yea u will fell it ... you got new life .. you can enjoy everything just with some precautions thats it ... not bothering to go for dialysis faced that pain scared as hell... you can enjoy your life and can live like every other people.. .

This is my experience.. I will happily advice everyone to go for transplant over dialysis

Both a hard question and easy, It depends on the person, I had a kidney transplant when I was teenage,now I am 24. For me, It is hard, I can't accept the way I am being, yes it seems it affected me psychologically, bu I would recommend neither dialysis or a transplant, being a disabled person while you are young is really tough (Not physically but transplant or dialysis is not the things for healthful people :) ). I cannot live in the moment in this way, Yes If I was 50 or 40 , It'd be ok to accept. But, Everyone knows the life expectancy of a transplanted kidney. Knowing the reality of I, someday, will live these things again and again is tough too, Because of that I didnt go college, I will not marry either because I dont want to make another person suffer in the future because of my health problems. I always say myself, I was born unfortunate ( with one kidney) , I will die unfortunate.

Anyway, These things should not make you desperate :) If you get transplant, you can do many things compared to dialysis and life expactancy much more. If you accept the situation it would be ok. While you have a kidney transplant, you can do anything , People won't realize if you are sick or not (even you wont realize somedays except medicine times). They will think you are as normal as them. You will be having the same energy like healthy people you can work, you can do sport. I would not compare the transplantation to dialysis. Dialysis make you ready for the death in a way.

Ok, that enough to write :) , You can do whatever you want when you have a transplanted kidney except dreaming the future. So, dont be afraid you should go for it.

SOct91
SOct91 in reply to desperateboy

Unsolicited advice...it saddens me to hear you think a new kidney means no future. I would wager most in our situation think the opposite. I too was only born with one kidney and it didn’t work. I had a kidney transplant (obviously not my choice) when I was 5 yrs old. I am now 34. Yes, there are times I worry about how much longer it will last but where does that worry get me? I keep myself healthy, take my meds and get my lab work. Also, I have been hurt badly by people, er person, who didn’t understand. I was in a long term relationship and he told me he didn’t want to be a widow. Needless to say we never got married and we broke up. Everyone I’ve told that to thinks that is a complete a$$hole thing to say. Now I’m in a new loving relationship with someone I know wouldn’t ever even think that. I understand feeling like not wanting to be a burden on others but I promise you, the right people will never hold it against you. Also, the future isn’t a promise to anybody!!

I’ve been in therapy practically my whole adult life trying to have a more positive outlook. Yes, I’m on antidepressants as well. Life, and living it with hope for a future, is worth all of it.

WYOAnne
WYOAnneNKF Ambassador in reply to desperateboy

I really disagree with you. There are statistics out there about the life of a transplanted kidney but this is not a for sure thing. This October 15th will be my 21st kidney anniversary. There are people on this site that are living strong 30 and 40 years after transplant. Yes, you can dream of a future....have a great work career, travel, etc.

desperateboy
desperateboy in reply to WYOAnne

You are talking about minority, If you want to see the reality you can go hospital's transplant centers and find many desperate people because their kidney doing not good, can find people who ,walk out from their season with their doctor , tearful because doctors asked biopsy for their new kidney, Also, you can go dialysis centers and talk to people who fail their transplanted kidney. Further, you can ask your doctor or any transplant center doctor the numbers of the patients overcome 20 years and the numbers of cannot pass it.

Anyway, It is not the main point how long it goes , It is like artificial you know ? We are not actually healthy,we are based on the medicines which can create tumors, make cardiovascular problems :) It is not just ok for me to plan a good future with a transplanted kidney, I wish I was healthy and not to think about kidney things at this age. Let's accept If we had a chance to be really healthy We could give fortunes for it :), Finally, A word I like; Hope is the poor man's bread.

By the way , I am not trying to be mean, If it seems like that forgive me :) I am just frank

Have a good day

WYOAnne
WYOAnneNKF Ambassador in reply to desperateboy

Sorry you feel so negative about kidney transplants.

I speak from my experience and some others on this site. I had my transplant at the U of WI from a deceased donor. I was told that deceased kidneys have a life of 10-12 years. I have always had a positive attitude. Sometimes I think that has helped me

I am really healthy as a result of my transplant!! My blood count is great and my creatinine has been a steady 0.8 - 1.0 for over 20 years.

I know there are exceptions. But just because there are, doesn't mean you shouldn't have a transplant... because it will only fail. Sorry, but I do not have a defeatist attitude.

Sorry you have not had a good outcome. But that doesn't mean that everyone will. Those waiting for a transplant have to make up their own mind whether they want the surgery or not. For many of us it has been a life changing GIFT!

Take care.

Tahmed251
Tahmed251 in reply to WYOAnne

I am 2 years post transplant. At the begining of the my transplant I was so happy and positive but as soon as I started taking the medications I started to feel bad day by day. I have not recovered since then. Everyday I think to myself should I take the meds or not. As soon as I take the meds I start to have stomach pain , I cant think properly, I cant see properly with my eyes, back pain and the list goes on. I ask myself what kind of a live am I living, I feel like I dont have a normal life. When I was on dialysis I did it have these kinds of problems, they are new things that has come with the meds I have to take. I asked my about the meds but he will not reduce the dosage or change them. I started working 2 jobs but had to quit them due to all these problems as a result of these medications. People told me that it gets better after 1 year but that has not been the case for me as I am still dealing with all these problems and see no change. I had friends who choose not to get a transplant and advised me also but I did not listen and now I am going through all these health problems.

WYOAnne
WYOAnneNKF Ambassador in reply to Tahmed251

If I were you I would be persistent and talk with doctors more regarding the side effects you are having from the meds. You should certainly be feeling better by now. I did have problems that first year with GI issues with the meds. The transplant team reduced my dose and I also started taking the name brand medication rather than generic. Doctors' told me that for most it makes no difference but for some just that little bit of difference in the make-up of the generic can effect you. I take name brand Neoral and Myfortic.

What meds are you on?

How is your creatinine?

Have you considered therapy?

Should I? My brother is a psychologist and I know what games they are playing :) Should I trust cognitive behavioral therapy or EMDR ? Therapists tries to change the negative perspective of you about the topic and try to make you believe and accept the things you dont believe. For example, I am talking about the reality of the sickness. But they will try to navigate from this reality topic to other perspectives of life other topics. They want you to forget the reality or accept and concentrate on something else.If they cannot be successful they will say you should see a psychiatrist and take medicines :). For the effective treatment, You should be willing for it and be pollyanna :)

Anyway, the reality is What I see from people losing their transplanted kidney is even it lasted long years when it ends, they say always tearful ''I forgot the reality I thought I was healthy, I worked, studied, did things but What I got know is the sickness (reality) I convinced myself about my health,''

Philosophically, yeah you are right too , maybe the only way to be happy is the convince ourselves when we cannot overcome things. :)

PS: Please, people who wait on the list for transplant do not take my word in a wrong way. What I am talking about is an extensive topic. I think too, The only proper treatment for this situation is the transplant not dialysis. the only option is transplant, dialysis is the acceptance of death not a treatment, know that! If you know that ok it is your choice but please do not ask questions like Transplant or dialysis! because there is no machine make you live but there is a treatment such that transplantation which is supported by immunosuppressant medicines, in a way convincing your body that the kidney is yours , so, The real treatment is here that the transplantation. , anyway, You cannot find people like me thinking differently, therefore it can be ok for you. For me , make or break

Good luck.

Well you recommended neither dialysis nor transplant which was troubling especially on this forum. And, you self described as a disabled person at the age of 24. I think therapy, not from your brother of course, would be good.

anne627
anne627 in reply to desperateboy

I could understand your negative feelings. I had kidney disease and high blood pressure at 18 years of age. I no longer felt carefree and was afraid to die. There was no Medicare yet. I am now 74. I went a long time without dialysis. I worked, got married and my husband met me knowing things may get worse. We have a son who is now married. I did go on dialysis in my 40’s for 1 1/2 years. I had an unsuccessful transplant in 1993,was very sick, went back on dialysis and got my current kidney in 1994. I always lived as much as I could. I traveled on dialysis and still do. I have a full, wonderful life in spite of medication side effects. It is worth it every day my wonderful donor gave me life.

I had transplant 6/2/2020. Coming up on three months since. I was on dialysis. I am now free! My recovery has been great! I can plan my day and not be worried that I have to go to dialysis for 4 hours three days a week and need to rest when I got home from the treatments. My creatinine level was 9.47! Now it is 1.16! I walk 1.5-2.0 miles every other day and feel great. Yes there were concerns about surgery, but they got put aside when understanding the freedom you get from having a transplant. Good luck to you....

Not me. It’s wonderful not having to plan my life around dialysis, the freedom to eat almost whatever I want, have energy again, to have my life back. No matter how many pills or occasional distress I might have, it’s worth it to feel like myself again. Going on 3 years now

There's a guide that just came out called "Is a Kidney Transplant Right for Me?" It was created by patients for patients considering transplant. They're honest about their experiences good and bad. I think you'll definitely find it helpful. esrdnetworks.org/toolkits/p....

I had a transplant four years ago. Absolutely no regrets at all. I feel strong again and my blood pressure is back to normal. I love being able to eat again (had no appetite before and food sometimes tasted metallic). I love having energy again. Downside: the prednisone weakens my bones but the dosage is so low now that doctors are not so concerned. I do have to make sure I exericise, especially weights, which is something we all should be doing anyway. I'm also immunosuppressed but I've had very little issues, and anytime I get a fever the doctors send me to emergency so they can watch me closely; with antibiotics, I feel well again immediately and sent home after a few more days to wait for lab results to come back.

Kidneys do so much - filter out excess waste and fluid, keep bones strong, regulate blood pressure. When the kidneys don't work, your heart is at risk (many people with kidney disease die from heart disease caused by poorly functioning kidneys). Your bones are at risk. Kidneys are amazing chemical factories that help keep all those chemicals and minerals in your body in balance. You don't have to worry about getting too much phosphorous or potassium. Kidneys get rid of the excess. Getting a healthy kidney is a great thing. The benefits for me has far outweighed any side effect. Even now during COVID19 I'd much rather be transplanted with a healthy kidney and be immunosuppressed from the medication than be on dialysis. Even though PD was doable for me, transplanted life is far better.

MTgirl2828
MTgirl2828 in reply to djlew67

Thanks so much for sharing I will definitely be digging into that guide!

I’m three years post transplant and although I’ve had my share of side effects. I’m so very thankful to have my transplant. With every side effect I’ve encountered I’ve reminded myself that it is a small price to pay to be alive. Right now I am experiencing knee and leg pain that may have nothing to do with transplant, however I’ve asked on here to see if it is something I need to discuss with my transplant center. Best of luck with your transplant I wish I could tell you it’s all peaches and creme but for me it did take some fine tuning of medicines however I consider all things minor compared to kidney failure and all that goes along with it.

Sweetheart, please let me tell you that a transplant is life changing. I received a kidney at 68 years old. No pain meds and I came home in 2 days. I pushed a little but it was worth it. My year anniversary is 9-9-2019. I feel so good now and you will get your life back. You are so young. It will be your decision but you are so very young. Good luck to you. I will keep you in my prayers.

My husband was on dialysis for 10 years. Besides the dietary restrictions, the dialysis process was exhausting. Towards the end, his health started to decline with really high phosphorous. He received his kidney (they said from a cadaver) July 22, 2019 and is so much better! He jogs 4 miles 3 times a week and his transplant team has been on top of his labs and adjust meds accordingly. It was scary and difficult at 1st because he also has diabetes and high blood pressure, but he's got a routine going on and is doing quite well. He takes His meds at 8 am and 8 pm. He's free from the dialysis chair! His nephrologist even said his kidney function was as good as most people with 2 kidneys. To sum it up, go for a transplant! It is truly life changing! Best wishes to you and your future endeavors.

How old is he?

He is now 59, he was 58 when he had the transplant surgery. He had a lot of concerns about what people need to do post transplant, worried about side effects of transplant medications, weight gain, possible rejection. He has the most wonderful nephrologist who said he has had only 2 patients who rejected kidneys in 25 years of practice and that was because they weren't compliant. My husband wasn't happy about having to have labs done every week, but I told him it was better than sitting in a dialysis chair for 4 hours 3 times a week. The labs went from weekly, to bi-weekly to monthly (unless a change was made in the dosage of the medication). So far, there have been minimal side effects. Honestly, I have observed that dialysis is really rough on the body. The dietary restrictions on dialysis are really crazy. You know, complications are possible with most types of surgery, but don't usually happen. I wish you all the best and I hope you will take a chance!

I am 58, and was on dialysis for 2 1/2 years before I received an organ donor kidney. Dialysis was very hard on me, and not for a minute do I regret getting a transplant. Yes there can be problems with a transplant, but the rewards outweigh the risks. You'll live a much more "normal" life even with all the medications.

I have my deceased donor transplant for26 years. To make a long story short, I had kidney disease since the age of 18, and high blood pressure. I didn’t have dialysis until I was in my 40s. After 1 1/2 years I had a transplant that failed right away and had sepsis their n the hospital. I was in a coma for 4 days. Then I was on dialysis another year and received a transplant at Columbia Presbyterian hospital in NY. This was in May, 1994. This transplant changed my life. I traveled all over this country with my wonderful husband who has encouraged me since I was 20 years old. We have a wonderful son and daughter in law. I do have side effects, didn’t have to take diabetes and cholesterol meds before the transplant, didn’t need parathyroid surgery, etc. it has all been worth it to have my life as it is.

Girl stop talking non sense feel happy and fortune that u will be healthy and normal again . I had my kidney transplany at 13 and now I'm 32 years old going to 33 and God Bless meeee. I sop bless im good and my kidney . So be postive and optimistic!!!! And trust me it gets much better u will feel normal again the only thing u have to be on meds for the rest of ur live !!!once again stop being so sad and negative 😪!!!! U will be living ur life ur gonna be born again .... I hope u take my advice and God Bless u wish u the best ....

If your message was supposed to make me change my feelings on the situation it didn’t. You sound rude. I can feel however I feel about the situation and that’s fine. I can ask questions. I CAN DECIDE if ITS RIGHT FOR ME. I never said I didn’t feel fortunate or happy to have the option. You don’t know my experience with kidney failure and I don’t know yours. Maybe try to leave something a little more positive if you want someone to not feel negative.

Wow !!! U took it the wrong way leaving a negative massage was the last thing I wanted to do pluz I didn't say feel fortune and happy because u r not i dont know ur feelings . Anywayz sorry u took it the wrong way I became very passionate writing this post and even if I dont know ur kidney failure experience I know exactly how ur feeling I been though it!!!! ✌✌✌

My nephrologist put me at ease and told me this is just another chapter in my life! I never went on dialysis and felt like I would have no life having to do dialysis. I was fortunate, even took a deceased donors kidney with Hep C because it can be cured! I did a 12 week treatment on Mavyret and show no signs of Hepatitis C. I am active, have traveled, and feel so blessed after a year and a half! Stay positive!

Kbressler
KbresslerNKF Peer Mentor

I have been transplanted for 33 years I can tell you it is worth it. Yes I have had issues but no of them where life threatening and few I could blame on the transplant. I had two days of dialysis two days only. I am now 70 years old have had a successful nursing career raised two daughters and now have four grandchildren to boast about. I believe you would benefit from revisiting your thoughts about transplant.

limloonglu
limloonglu in reply to Kbressler

was it a live kidney ?

Thank you everyone who responded and shared your stories. I love hearing about everyone’s experiences! They are all SOO DIFFERENT! To sum it up, my diagnoses was very sudden and unexpected. It involved two code blues, and a 7 day sedated coma. Then waking up to a whole new life.. it’s been a crazy almost two years and it’s finally calming down! I think that’s why I’m so nervous about doing a transplant. My mind needs calm. I can’t go through something like that again! At least not yet.

Thank you all for so much for responding!

LisaSnow
LisaSnow in reply to MTgirl2828

Are you doing well with dialysis? If so there is no rush to get transplanted. You can always think on it before committing to anything. It is very, very, very rare for a transplant surgery to go so bad that you end up in a coma, but without knowing about your medical conditions I couldn't say.

I was diagnosed at 26 and transplanted at 27. At first transplant seemed like the worse option but I'm now 13 months post-op and it's truly amazing how much more energy I have. I'm guessing the videos are reminding you of medication compliance and other things that come with transplanted kidney care. If that's the case, they're important to watch -- but don't let them scare you. Life with a transplant is worlds better at least in my case, as a fellow young person, and there are ways to keep up with medication and ensure your transplanted kidney stays healthy. Don't hesitate to reach out if you need someone to talk to friend.

Hello. I think everyone's experience is different. Im 3 weeks post transplant and for me, Its been ok. I was on PD dialysis for 2 yrs. I became comfortable with it and was hesitant to get the transplant but the reality is, without a transplant, eventually I would not survive. The good thing is if the transplant is unsuccessful, you can return to dialysis. Post transplant honestly is a whole new life. A new medication schedule, probably insulin, lots of pills . When i first started dialysis, i wanted no part of it and had to learn a new way of life. Transplant is no different. We sometimes have problems with change but i guarantee you? If you can do dialysis, you can do this.

Hey there. I'm 22 years old and I was on PD dialysis for a little while and then I had a transplant. I thought about what you're thinking about exactly. But PD is restricting especially when you want to go places and stay over night somewhere. You are so young and you deserve to live your life to the fullest and believe me, dialysis is only a treatment, its not a solution. I had a transplant and while its rough in the begining, I feel like I am back to who i used to be. And in terms of maintenance, all you have to do is take some meds twice a day and a couple of blood draws compared to hooking yourself up to the bags and clean the port, all the time. I know its scary but believe me, its the better of the two evils.

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