New to altruistic kidney donation

[thesnook]

I just enrolled to be an altruistic kidney donor. For those of you who have done this, what do you wish someone had told you?

[vegiedonor]

Hi, I like your screen name. I think we are all snooks, but beyond that don't let anxiety get to you and beware of people giving you push back for being a donor. Afterwards those same people will tell you that you did a good thing. This is going to seem strange but get use to the idea that angels are real and come in different forms. Tell us a little about yourself.

[thesnook in reply to vegiedonor]

Thank you for the advice. For the record my husband's nickname for me is "the snook" (short for snookums. Yeah, I know but after 34 years it grows on you)

[EchoMax1012]

It is great you are going through this! Be patient with the process. It takes several months, perhaps, to complete the battery of tests and visits from the time you register until the day of your surgery. The reason for this is that the team you work with is dedicated to your health, with the top priority of making sure there will be as little risk to you as possible--they are working for you, as much as the recipient's medical team is working for him/her.

[jtaver352]

Wish someone would have told me about the “gas” pain felt in the shoulder area and back and how to relieve it. The incision never really hurt . A few months after my donation, I was able to help another donor with pre-op and post-op expectations for the journey. FYI .... Bring comfy slippers to walk the hospital cooridors and your own pillow!

[vegiedonor]

Thanks for the "inside info". The gas pain can be a real drag as jtaver352 mentions but went away for me in a few days. What I found useful was a video, a donor had done, about her actual experience and thoughts when walking into the O.R. and climbing onto the table. Something you and your husband might like to see when you get closer to going in if you are interested.

[thesnook in reply to vegiedonor]

That wouls be great! Is there a youtube link?

[vegiedonor]

This link should work. youtu.be/7tOnVyVITMY(Not working as expected?) Lori Palatnik surgery at Montifiore Hospital Bronx NYC. It's a 41 minute video with the O.R. segment starting at minute 31. We in the NYC area get to walk into surgery, wait by the stacked up chairs and trash cans before going in and it's cold!

[jtaver352]

Gas pain aside, donating a kidney to a total stranger has been the most rewarding experience of my life. I wouldn't change a thing. My heart has grown 1000 times with this simple act that more people should think about doing. I only know the recipient of my kidney is a women in her 30's. I went in to this knowing I might never meet my recipient, and I am ok with that. On my 6month follow up, I did inquire about the status of my recipient and I was told she is going great. My heart swelled a bit more.

[NeedingAdonor]

That is wonderful. My husband is waiting for a donor. It means the world to whomever gets that kidney from you. You will be an angel forever for saving someone's life. Thank you! Go fourth with courage because this surgery has a very high success rate for the donor! You are appreciated in more ways then words can ever convey!

[vegiedonor]

Hope all is going well. I had my recipient over for diner this weekend and another donor came over to visit us. We had an interesting time and would like to guide you to two more websites. Donortodonor.com and livingdonor101.com. Abigail Marsh has a wonderful TEDx talk on who we are and donor101 has many facts you should be aware of. What we aren't told, in the US, is that there really isn't much data and follow up for living organ donors (LOD). The transplant industry is for the recipient and the medical community really isn't there to keep you healthy. What I am trying to say is that some things aren't going to be mentioned or are glossed over. Your donor advocate is the only person watching out for you but you need to ask the right questions. Please ask about monitoring you adrenal function before and after, what your new diet should be and support you have available afterwards. My impression is that most LOD's have a very positive experience but some do not and you'll need to stay healthy afterwards and supported.

[EchoMax1012 in reply to vegiedonor]

I agree with your comments. I think it is also best to always be aware that now, you just have one kidney, and although there is some compensation by your remaining kidney for your donated kidney, you must take extra good care of yourself. I do like the Dean Ornish lifestyle medicine perspective, of the importance of good diet, exercise, stress management, and love and intimacy as best self-care habits to nourish.

[A_Cuozzo]

It will be 10 years for me in 2 weeks and I can honestly say I don't feel there is anything I wasn't prepared for, that I did not already know. I will say that I was extremely proactive in doing research and took everything very seriously: the good, the bad, and the ugly. I would like to mention that over the years of being active in the donor community, the one thing that I see often with many donors is poor self-care, post-donation. A healthy diet and daily exercise routine, in my opinion, is a very important part of your lifestyle, especially after you donate. Habits like drinking lots of water, eating a diet that has the optimal amount of protein, and staying away from salt, all support a healthy kidney. If you can't maintain that, I think you will run into health issues in the future. So, read as much as you can – facts and donor stories. Good luck!

[Hidden in reply to A_Cuozzo]

Hello A_Cuozzo! I am very to see your post and that it’s been 10 years since your operation. That’s awesome. I am strongly considering being a donor to a friend (we’re a perfect match), but I’m feeling a bit overwhelmed with the amount of information or lack thereof. Someone mentioned in the comments above (and I’ve confirmed in my research), that there is not a lot of studies regarding the long-term effects of Living Kidney Donors. There was an article on the Washington Post, where a man, who is now a doctor, REGRETTED, donating his kidney to his step-uncle bc he felt he wasn’t advised that there is little information about the long term effects of living kidney donors. Is there a way we can chat? I would like to hear about your experience.

[A_Cuozzo in reply to Hidden]

Hi Jackie9, yes, please reach out to me via email at [e-mail] and I will share my phone number with you. You can then give me a call if you feel comfortable, and I will be more than happy to talk with you.

[Fred2123]

I wish I had been told about the extensive testing and how much time it required that you take out of your life and work schedule.

I don't know how anyone working a full time job can do it.