Kidney — TransplantLyfe

Kidney

So happy

NainaTransplant Patient
December 8, 2020 in Kidney

I was scrolling through my Instagram, when I noticed this ad, I was like so excited and so happy I checked this community and can't even express my feelings right now. I am a 4 year post transplant. From past 4 years, I've been scrolling through my Instagram searching #kidneytransplant #kidneytransplantrecepient #transplantsurviver etc. I needed a buddy, real bad who could really talk to me and relate.

I did find a couple of people and yes we did click. But this community helps us to really connect with them without any hassle.


Thank you!!

Very excited to be a part of it. If possible, make an application. :)

1 - 26 of 26 Replies

  • rimkmrOther

    Hi Naina,

    We are so happy that you found TransplantLyfe! Looking forward to building this community!

    December 8, 2020
  • KarinExpert
    Transplant Patient

    Hi @Naina - your message really makes me happy! We are here for you and hope that our community can grow together and be helpful and inspiring!


    Karin

    December 8, 2020
  • meghansmithTransplant Patient

    Hi @Naina ! So glad you are here! I had turned to Instagram hashtags post-transplant in an attempt to find others like me - this community is so powerful for making connections! :)

    December 8, 2020
  • Jack_LTransplant Patient

    Hi @Naina! So happy you found the page! Congrats on 4 years post transplant- that is awesome. Can't wait to connect with you and learn more about this transplant journey together! - Jack

    December 9, 2020
  • NainaTransplant Patient

    Same here all ❤️❤️ cant wait to interact

    December 10, 2020
  • JeanmarieTransplant Patient

    Hi Naina!! Welcome! Congratulations on being 4 years post transplant! If you ever need a buddy to talk to, send me a message! I am almost 15 years post transplant! I love chatting about my journey and experiences! 💗

    December 11, 2020
  • NainaTransplant Patient

    @Jeanmarie woah! I'll be more than happy to interact with you guys. Even with post 4 years i still have like a million questions. I hope I dont start bombing them on you :)❤️

    December 12, 2020
  • KarinExpert
    Transplant Patient

    @Naina how was your Xmas???i

    December 30, 2020
  • NainaTransplant Patient

    I'm in India, and due to coronavirus i didn't get out of my house much. Its been more than half a year I've tried not to step outside

    January 12, 2021
  • NainaTransplant Patient

    I'd like to share this. One of my friends made this for me. This makes me feel so overwhelmed 🥰🥺

    January 12, 2021
  • KarinExpert
    Transplant Patient

    So fantastic! Love the picture and happy anniversary!!

    January 12, 2021
  • KarinExpert
    Transplant Patient

    Are you based in Delhi?

    January 12, 2021
  • NainaTransplant Patient

    @Karin yes in delhi.

    Also, thank you sooo much

    January 13, 2021
  • KarinExpert
    Transplant Patient

    I have wanted to visit India, but always been worried about infections - how is it living there w a transplant?

    January 13, 2021
  • NainaTransplant Patient

    Sometimes this is a challenge. Because everyone around me can do things I can't. It does gets depressing sometimes.

    after my transplant there not has been a single year when I was not admitted to a hospital due to some infection except 2020, in that too i got intestinal tuberculosis. I was hesitant due coronavirus to get admitted to the hospital. By god's grace we were able to treat it at home. There are a lot of infections. I desperately want to move to another country. Just to live healthy and free life. Otherwise my transplant team is nice. However, they have just put a lot of restrictions on my diet and exercises due to the malpractices in food.

    How's transplant life in your country?

    Do you exercise? How often? I weigh 79 kgs for 5'4 height. I gained a lot recently how are you guys managing your weight?

    January 13, 2021
  • NainaTransplant Patient

    Im sorry fot just adding a lot of questions here

    January 13, 2021
  • AliEm14Expert
    Transplant Patient

    I love this so much! I remember feeling the same way, and doing the same things right after my transplant. My favourite thing about transplant lyfe is that it has become this place where we can all gather together and connect. So much easier than shooting in the dark trying to find one another on instagram or facebook

    January 13, 2021
  • NainaTransplant Patient

    @AliEm14 sooo true its like a godsent. I really hope they make an app! Its a little difficult to keep logging in from web.

    But i really appreciate this initiative!!

    January 13, 2021
  • lescp3Care Partner
    January 14, 2021
  • AliEm14Expert
    Transplant Patient

    I'm in Canada. I was just recently transplanted (5 months ago!) so I've never experienced transplant life outside of the pandemic. Right now it's all masks and lockdowns, which isn't actually that different from my life before with my previous conditions. I'm really looking forward to being able to travel once restrictions lift. I've been taking a lot of precautions but I still do go out from time to time to do things like get groceries. I've also maintained really consistent contact with my entire medical team (transplant team, labs, physio, talk therapy...) which I feel so grateful to still be able to do.

    Because of my condition before, when I had to consume so many nutrients just to stay alive, I actually lost a ton of weight post transplant. I'm pretty sure this isn't normal, but even with all of my medication induced cravings I still find I crave things like an apple or a big bowl of salad. I have been trying to work out more consistently now, but that's just a recent thing. I'm aiming for 3 days a week. Before transplant I was a yoga teacher, so fitness was always a really big part of my life. I found that small things put together is so much more attainable for me than trying to dedicate a big chunk of time to getting a good work out in. I do a lot of stretching and light movement (like a gentle yoga practice) and then maybe dedicate 10 minutes to a more intense core workout. But it's crazy how when you're intentional about it, even the small "easy" movements can affect your body. Did you work with a physiotherapy team post transplant? Mine suggested some exercises to get me into moving again post surgery, and continue to follow me and modify my workouts based on what I need or where I'm still weak

    January 14, 2021
  • KarinExpert
    Transplant Patient

    @Naina @AliEm14 i am based in the US and I do pretty much everything I want - but I have made mistakes I won’t repeat - for example I traveled to the DR and caught salmonella which led to sepsis and then c diff so a year was lost to hospital stats and weakness - now I avoid trips to countries my transplant team ban (!!) which essentially is every country outside NA and Western Europe. So far that has been fine but I would like to see India and Africa - but I can live without it (or rather I will live of I avoid them!). I love my life w my transplants A they have allowed me to have a child and to start my own company - to be Happier in general and to be part of this community!

    January 14, 2021
  • KstarTransplant Patient

    So happy I was able to find this site thanks to @meghansmith post on Instagram! I too located other transplant recipients through #kidneytransplant and others too!

    February 4, 2021
  • AliEm14Expert
    Transplant Patient

    I look forward to traveling once Covid ends! My husband and I are looking to adopt from South Africa, which my transplant team is ok with as long as I take precautions. I'd also love to see Europe, and of course more of North America! I wasn't really able to travel at all before transplant (I did a few trips to the US when I was younger and with all my meds for my GSD it looked like I was a travelling drug dealer. As a child! I quickly learned it wasn't really worth it)

    February 5, 2021
  • Slm75Transplant Patient

    Hi, I would love to chat with other transplant patients. I'll be celebrating 35yrs post transplant in November. I've looked for people who have had a transplant longer then I have to see how their experience has been, but that hasn't happened. So if I can help those that have less yrs then I do or are on the fence about getting a transplant I'd be happy to chat with you.

    September 9, 2021
  • KarinExpert
    Transplant Patient

    @Slm75 Wow - 35 years w a tx - you are an inspiration to me and to all of us! What is your function now if I may ask? What are you doing differently than those who lose their graft early? Would love to study this

    September 9, 2021
  • Slm75Transplant Patient

    My creatine is 1.29. That's just gone up over the last couple of years, it ran .98. I think alot of it is my meds, I don't take very much, (2) 500mg of mycophenolate daily and 5 MG of prednisone everyother day. I keep active so I don't gain weight. My donor was my brother who was an identical match. Washington Hospital Center in DC said they only see those type of matches about 1 every 4 yrs.

    September 9, 2021
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