Recently I have been informed that my gfr has fell to under 20 and I should be prepared to start looking for a donor. I don’t even know where to start. Hoping this forum will help me with some tips.
Next I don’t even know how to live my life now do I continue as I am, or do I focus fully on finding a donor
Once after the transplant, will I live normally? Will I be able to travel and go to exotic countries? Or should I just try to accomplish all that now?
Please help
Hello, I know you must feel very confused and overwhelmed. Your medical team should have resources to help you think about ways to find a donor, friends and family will also be of great use spreading the word or offering to donate themselves. Also make sure you get on the transplant waiting list in case you could get a kidney quickly if there is a match or other circumstance.
After your transplant you can live your life like most any normal person. It takes a bit of adjusting to the medicines and things but youll feel better and heal. I am a little over a year out and am heading to a yoga retreat in some remote part of Mexico...7 months out I went to Bonaire...so yes to travel, just maybe with a few new rules or precations but it truly is not as bad as we can make it seem in our minds. Best of luck!
Thanks for the detailed answers.
I am thinking of created a gofundme campaign for donor (not money but looking for donor). Do you think that is a good idea?
I am also telling friends and community members to ask around.
About travel. I like to travel to exotic places. Thanks for letting me know I still can do that 
I was thinking to try to do more traveling now before the time comes of transplant.
G-d bless.
Morning!
I started looking for a donor in January and am now getting a transplant in less than two weeks. For me it started with picking a hospital to have the transplant at. My doctor recommended a few and I chose one based on the fact that I could travel there by car and back and forth in a day without too much headache. I then attended an all day information session there and met with surgeons, financial advisers, social workers, nephrologists, etc. Was given a transplant coordinator who guided my through the process. Because I am not on dialysis, I was placed on an inactive donor list and then sent on my way with a followup appointment set for a year out. I went home and put a post on Facebook saying that I was looking for a living donor and that really got things rolling. Your team will be very helpful with the whole process and is always available to answer your questions and quell your fears.
It's just a waiting game. I was waiting for the kidneys to fail enough to start the transplant process. Then waiting for the news that I have a donor. Then waiting for a transplant date. But through all of that waiting I continued to just live my life. Patience, my friend, is what's going to get you through it! You'll hit bumps in the road along the way and have to make adjustments, for example maybe in your diet, but it's all doable.
So I cannot give you any advice on after transplant and how you'll feel. I know there are things I can never eat/drink again so I am enjoying those now. And I can never scoop my cat's poop again which is fine by me! LOL! Travel is certainly not out of the question. That was something I asked about. Might have to wear a mask on a plane but that's certainly not the end of the world. There are quite a few other things you have to watch out for and I am sure it will be overwhelming at first but will become second nature after you get into a grove. Stay positive, roll with the punches and ask lots and lots of questions along the way.
You will get through this and will have support!Best of luck to you!
Thanks for the advice and your journey story.
From what it seems, it took you about 10 months to find a donor.
May I ask what you have done to get this success so fast? You mentioned that you just posted on Facebook. Just 1 post? Do you have a large friends list?
I would love to follow your advice if you can share
Any steps or plan you can share would be highly appreciated.
Thanks so much and good luck on your transplant.
I did one post. Don't think that I have a ton of friends but each of my friends shared it and their friends shared it and their friends friends shared it so it just worked! It ended up being shared like 3000 times. it was nuts! Some people wanted to be friends on Facebook and some of those requests I accepted and some I didn't. I was incredible the response and people who wanted to be a donor. Especially the people who I didn't know from the man in the moon. I created a separate email account for people to contact me at should they have questions. I answered what I could then referred them to the donor team. Your team at the hospital will have specific parameters to follow regards posting to social media that you will need to follow. I would not post anything until you have someone to direct possible donors to with their questions.
As it turns out, my donor is my sister. I am adopted and not biological sisters but have been together from the beginning of both our lives. So I guess now , after transplant, I will finally be a biological sister! LOL! I am happy to answer any questions you might have!
Yesss u will u will life ur live like a normal person of course ur going to have to take meds for the rest of ur live but trust me u will be normal be able to do all the things u want and more I'm 31 and had my kidney transplant at 13 and I have life my live i just have to watch more wat I eat because it's been a while with my kidney and it decline a little but I'm still here and being positive. So dont be down be happy u will have a chance to do wat u want be positive I kno is hard and most importantly have faith God bless and good luck
When I was in your situation there were two resources I found extremely helpful in finding a living donor: Risa Simon's books (they are available on Amazon) and the Living Kidney Donor Network website. Finding a donor requires time and energy and emotion, but it is your life and your health. And yes, following your transplant you can travel to exotic places!
I would start by looking at the NKF website. They have some helpful tips on helping you find a donor. The BIG ASK.
I am 20 years out from my kidney transplant. I was hiking in Glacier National Park in Montana when I was 8 months out. Now other than taking my transplant meds twice a day and having quarterly labs I lead a very normal life. I eat anything I want, but, try to stay away from salt and eat heart healthy. My husband and I travel a lot in the US, Canada, Mexico, Caribbean and Europe. I have no restrictions and am leading a wonderful life!
Unlike what Jenngal said, I have never had to wear a mask on an airplane.
Best of luck finding a donor! Remember to think outside the box. A man I know had a t-shirt printed up with his need for a kidney. He wore it during his family trip to Disney. He found a donor. I asked family, friends, people at work, at church...Several people were tested for me and I wound up with a deceased donor. It wound up being a great match 4/6 and here I am 20 years later. My creatinine has been a steady 0.9.
Second kidney transplant
YEARLY Transplant Re-Evals Prior to Transplant
Post Kidney Transplant since December 13 2017. 
Had my third kidney transplant 
Question for those who have pkd and had a transplant 
