Any young adults with kidney transplant?

[vision22]

Would like to exchange experience and how did you cope/adjust with life

[Spooky108]

Hey! I’m 27 so I’m not sure if that counts as a young adult haha but I’m definitely the youngest person that I know personally who has done dialysis/ had a transplant.

I received my transplant in February of this year so I’m very much still adjusting. I’m super fortunate that my new kidney has worked amazingly since day 1 and I’ve not had any issues so far. Overall, I feel better than I did on dialysis and am very hopefully about the future. But I’ve also not felt as amazing both physically or mentally as my doctors made it seem like I would after having a transplant. For me, there has been healing pain, medication side effects, anxiety, etc. I work from home and about six weeks after my transplant I started working again, which has been really good for my mental health. Just having some clear goals to focus on and something to think about besides my kidney has been really beneficial. Other than that I feel like I haven’t really re-entered the world and had “normal” life again yet. But I’m talking it all one day at a time.

It’s nice to see other younger people going through the same process. I’ve talked to some really great and insightful transplant recipients who are all much older that me so it’s comforting to see people in the same stage of life going through the process. I’m always happy to chat more and compare experiences and I’m interested to see who else replies

[AndrewT in reply to Spooky108]

Dear Spooky108,

First of all Congratulations, on your Transplant, it 'sounds' like you are Doing well. Ok maybe 'put off' the Ten Peaks Challenge for a while yet😀.

I'm considerably Older, than you, I'm Sixty now and was Transplanted in July 2013- after four years (almost exactly) on Hemo-Dialysis. Yes it will 'take time', for your body to adjust to the Drugs, and yes there will be Drug 'changes/ ammendments' for a while too. Rest assured these are ALL perfectly normal and, very much, part of the Transplant process. Do 'report' any, Very unusual/ unexpected, Things to your own Transplant Team, at your Check Ups. Other than that.....

Enjoy your Transplant👍

AndrewT

[vision22 in reply to Spooky108]

Thank you for your reply. I am 25. No dialysis before. Kidney transplant on 02-17-22 from deceased donor. Had many complications and post transplant surgeries due to infection that caused internal bleeding. Still in recovery process.

[swimmings in reply to vision22]

Hi. I was twelve when I had a transplant in 1960. I would have died without the transplant. I have lived a pretty normal life I have three children and grandchildren and even great grandchildren so I am so grateful to be alive. I have had my ups and downs like everyone but the Joys of life outweighs the downs. Remember your new organ is now your organ. It is there to help you live a normal life as possible. You were given a second chance of life. Embrace it .

[vision22 in reply to swimmings]

62 years post transplant....Wow that is a record! Did you get only one transplant?

[swimmings in reply to vision22]

Yes, I only have the one transplant so far. Doesn't mean I won't need another one in the future. Who knows how long a transplant lasts.

[jennifer24 in reply to swimmings]

Wow that u had that 1 transplant since the 1960s and still doing well with it. Mines is 21 years and I get soo worried any advice ??? My creatine is 1 8 now so worried but anyways what a blessing and very inspiring God Bless.

[swimmings in reply to jennifer24]

You are doing good for having the transplant for 21 years. I think the best thing you can do is keep a positive attitude. Much healthier than worrying about kidney failure. The way I look at it I got a second chance at life as you did for at least the 21 years of life. If the time comes when we have to go through another transplant we will one step at a time. God Bless Hope your kidney last much longer.

[jennifer24 in reply to swimmings]

Thank y soo mych for ur kind words. ...

[YorkyinNorfolk in reply to swimmings]

Congratulations. Loving your approach 😊👍

[desperateboy]

I'm 25 now. I had the kidney while 14 years old from living donor.I was born with 1 kidney. At 14 ,one night, I passed out with urea poisining and was critical for a week. I was on dialysis for a month.I Couldn't adjust the life. Didn't experienced any side effects of medicine but, psychologically, I couldn't accept the transplant. it's like a death for me.The idea of being on medicine for lifelong, the idea of living with someone else's kidney, I can't accept this new myself, this body. I miss my childhood. Still trying to fill the feeling of emptiness with stupid things. I don't take my medicines as said. I trıed psychological treatment too. In recent months, I started again CBT therapy but didn't work again. Anyway , It's been 11 years and still I wish every night that I hadn't the kidney, that passing out was my end.

[PKDpostTRANSPLANT in reply to desperateboy]

Hey there! I'm a 35 year old kidney transplant recipient, so I don't know exactly how you feel having a transplant so young, but I was diagnosed with chronic kidney disease with no cure at age 13 and already had enlarged kidneys with numerous cysts on them at this point, so I know a little bit about having a different childhood than most. For me, it has been difficult to relate to other peers throughout the years which has contributed to loneliness and I have felt depressed about my condition. But my religion (Christianity) has been a source of comfort and hope for me throughout my life, giving me peace and joy in the most difficult moments.

I know you said you are seeing a psychologist, if you haven't already, make them aware of your thoughts about wishing it had been the end. You do not have to live life feeling this way, you can feel joy and peace in the midst of these circumstances. If you don't feel you are getting help, try a new psychologist, doctor, or counselor (If you are open to it, I suggest finding a Christian counselor). And please keep taking your medications, l would hate for you to lose your transplant before you get a chance to enjoy this chance to live! There is hope for you!

If you ever need to reach out or have any questions, please message me anytime!

[vision22 in reply to PKDpostTRANSPLANT]

Thank you for your comments

[vision22 in reply to desperateboy]

You are not alone. Sometimes I have the same feelings. Accepting my new reality is a challenge but has to be done. Hope with faith and good medical care all will improve.

[connecting]

I got my kidney at 16, I'm 34 now. I was on dialysis for a year prior to getting the kidney. It took me a bit of time to get back up on my feet - I was in really bad shape on dialysis, barely hanging on to life. While I definitely felt a lot better pretty much immediately post transplant, given how badly off I was on dialysis that's a low bar. I would say it really took a couple of years to figure out the right medication balance and gain enough confidence to really enjoy my new chance at life. I have definitely been living my life to the fullest since getting my transplant, though! Went to college and grad school, got my dream job, traveled all over the planet (went around the world twice!), took up a variety of sports (from trapeze to triathlon), checked a lot of items off my bucket list (from travel adventures like Everest basecamp and backpacking in New Zealand to professional milestones and personal accomplishments like qualifying for a dance competition ). Pandemic's put a bit of a damper on things, of course, but that's life - and a kidney transplant is what is allowing me to live it, mostly on my terms. Sure, there are some things I won't do - keeping my kidney safe is a huge priority. But most people I know aren't doing absolutely everything they want to be either, for various reasons. There's no such thing as a perfect life.

When I got my kidney I realized I would never know adult life without some medical constraints; so I made it - and am still making it - a point to maximize my life within those constraints. Having a kidney transplant doesn't have to be something that prevents you from living the life you want; it certainly hasn't been for me.

[vision22]

Thanks. It looks that you are getting an almost normal life for a young adult. What were your most challenging medical constraints?

[connecting in reply to vision22]

For me the biggest thing (other than covid) is travel. There are other minor inconveniences (sun precautions, not sharing food with friends, not being able to have a roommate in college etc), but the single biggest thing I need to work around (again, other than covid) is travel arrangements. I travel a lot for work, and whenever I take vacation I also like to travel, typically to remote places.

Here's roughly what goes into a standard trip: if I'm going somewhere with nearby transplant hospitals, it's pretty simple. I just make sure I have enough meds in case my flight gets delayed, something goes wrong, etc. Once a year I get titers for vaccines for foodborne illnesses; if they come back low I get a booster.

Then there are "nonstandard" trips: these are places where there is no nearby transplant hospital. If that's my destination, I make contingency plans in advance: in particular, I make sure that I have the option of calling an airlift to a transplant hospital if needed. I've only had to call an evac once, at a work expedition in the arctic when I got thrown off my snowmobile and thought the kidney took some trauma (it hadn't, because I was wearing a brace on it - more on that below). Going to places with extreme weather also means you need to get special storage for your meds or they will become unusable.

As far as sports go: for contact sports I've needed to get a brace made to protect the kidney, and that has disqualified me from participating in competitions in certain sports (but probably saved the kidney during the snowmobile incident, so totally worth it). Honestly before Covid it was mostly minor inconveniences and making sure I had my ducks in a row before going on nonstandard trips. Covid was really the first time since maybe a few months post transplant that I would say that having a kidney transplant significantly impacted my life.

[vision22 in reply to connecting]

Good suggestions. Hope I will be able to travel overseas in the future.👍

[LisaSnow in reply to connecting]

Why do you need a transplant hospital near by? Generally speaking the issues relating to rejection are treated by transplant nephrologists not transplant surgeons.

[connecting in reply to LisaSnow]

True, but rejection is only a subset of the concerns that come with the transplant. For example, in the case when I was thrown off the snowmobile, trauma to the kidney would have needed a surgeon. The airlift to a transplant hospital contingency was recommended by my transplant team at home for situations like that, I suspect.

[horsie63 in reply to connecting]

I used to do ultramarathons and would love to do so again...would something like a 31 mile (walk not run) be in the cards for a person with a transplant?

[connecting in reply to horsie63]

No idea, sorry! I'm not an MD - I only know what was recommended/approved for my particular set of circumstances. Check with your transplant team!

[SOct91 in reply to connecting]

I was reading through all these and you really hit home in terms of similarities. I’m 35, had a living related donor kidney in 1991. I went to college, grad school, traveled some. All I want to do in life is travel - so inspirational to see someone doing all that. I’m scared to go to some countries bc of viruses and/or food poisoning. I appreciate your tips on how to take precautions traveling, mainly I just get travelers health insurance, any vaccines, and obviously take more meds than needed in case - any more tips? Right now though I’m literally afraid to even get on an airplane. It was unclear from your post whether you were still traveling for work during Covid - sounds not? But if you are, any tips? What have you been told about traveling?

I’m engaged and (hopefully) getting married in October. It’s been tough navigating the festivities - is it safe to do xyz? For literally everything. Including the wedding itself. I just don’t know how to cope with this. (Ps we’re not planning on kids partly for my situation, partly no reason needed) so really if I can’t travel, or go to concerts, or anything that we love to do is off the table it’s hard to imagine ever having the life we want since Covid is here to stay. And he didn’t sign up for any of this

[connecting in reply to SOct91]

I'm so sorry it's been so stressful with the wedding planning and covid. But congratulations on getting engaged! That's wonderful and exciting

I've started traveling a bit again. But I should say that my covid situation is somewhat unique. My reaction to the mRNA vaccine appears to have been consistent with that of a non-immunocompromised person, at least as far as antibody counts and cellular assays go (we're all a bit stumped on how that's possible, but I'm certainly not complaining). Nobody really knows that means, though: I'm still immunocompromised, but given my vaccine response it appears likely that my symptoms from covid would be (hopefully!) mild. But I'll emphasize that my situation is really unique, so please don't model your covid protocols on mine. I had long and complicated discussions with my transplant team based on my immunity results, but those discussions really individual and specific to me. I would talk to your doctor about they consider to be safe for you.

[SOct91 in reply to connecting]

Thank you 😊. It’s helpful to know what your doctors are telling you although I know everyone is unique. I ask mine but they always say just err on the side of caution and be careful. I was lucky to have a good response to the vaccine, well that is, after the fourth dose/booster my antibodies shot up over ten-fold so I guess that’s promising.

[Tahmed251]

I was 40 when I got my kidney transplant. It's better than dialysis but still there are many problems that you have to live with for example the side effects of the medications, high blood pressure, stomach issues, depression and anxiety, vitamin d deficiency, always having low energy and low magnesium and much more. This is from my experience but I am still grateful for the transplant.

[kidneygurllll]

I was diagnosed with kidney failure at 19 and was on dialysis for 7 years (most of my twenties), finally received a kidney from my angel (deceased donor) and been post-transplant for about 4 years now! I was lucky enough to travel once before covid hit and am looking for things to brighten up even more so traveling can be done for freely (hopefully) soon. I am still adjusting for sure, mentally more than physically. The first two years were especially the hardest. However, being on dialysis for the longest I won't trade anything to go back. Of course, I lie in bed thinking how life would've been if I never had to be in this situation from the get go, but knowing I can't doing anything about that I try to think positively, focusing on the present, not dwelling on the past. It is hard not to be constantly anxious for the future though -- esp with the pandemic, unknown viruses, and how these many many other things will affect my health. Or, how long will my transplant last. Like a lot of other people here, I have found my solace in God, and my faith has helped me a lot through this journey. I like to say, I'm living on borrowed time so I want to live my life to the fullest, though it is easier said than done. At times, it gets frustrating comparing my life's timeline to my friends (or seeing them do things with such freedom I will never have) but I try to take a step back to remember that no two paths are alike and that doesn't mean one is better than the other. I just have to take it day by day. As a chronically ill single twenty-something-year-old now reaching into my thirties, I do question if there will be someone out there for me who will be able to love me for who and what I am, and embrace all that comes with me, but remembering that though I may be a lot, I am enough. I hope that resonates with everyone else too! I come on this forum from time to time, and hearing from people who knows what it is like to be in my shoes def makes me feel less alone. Especially hearing from those who has been transplanted with the same kidney over decades and are living healthily gives me a lot of hope as well. I think it is natural to be anxious and worried but the vital thing to remember is that the fact that we're here today even writing/reading things on here is evident of how strong we are. I don't know anyone here personally but I will include everyone in my prayers.

[Bsasup]

Hi I got my transplant at 38 and it sucked. I just had kids, got promoted to a top position at work. So here’s the thing fight it, remember what you would loose. Covid has made things harder for us that’s for sure. But keep your head above water. You are alive and able to do most things. Remind yourself where you were before the transplant. I got very sick and lost memories of my son walking and my daughters first giggle. Little things but I tear up when I think about. The past in mind is cloudy, however the future is available to me. It’s now a second life and I’m making the most of it. I recently could not go to a birthday party at a bar because my anxiety was through the roof. I can’t get sick, you know that feeling. It really brought me down, but my friends called me the next day and cheered me. They understood they saw meWhen i got sick. Look its hard to keep friendships because the places I used to go I really can’t anymore. It must be harder since you are young. Look its always going to be something, look forward not behind or what could be. Smile and make every other day a better one!