Feeling very frustrated today

[RUKIDNEYME]

This is my problem with the whole heath care system and putting the responsibility on the patient to find a living donor. As I am being worked up for a second kidney transplant I am constantly reminded from the doctors about the importance of finding a living donor, there are all these tools out there to help you find a living donor but really not a organization that takes the stress off you as a patient to help you advertise your needs to the public. All the tools like with the NKF help YOU to help YOURSELF find a donor. There is no advertising living coordinator out there that takes some pressure off you. Thankfully I still work and I have spent close to 1,000 dollars in basically advertising myself to find a living donor with bill boards, flyers and boosting my page on Facebook (A Kidney for Kristen). Then I get a message on Faceboook last night from another CKD patient who is on dialysis telling me that "Well you have already had one transplant, I think it is selfish of you wanting another one where there are people out here who want their chance" I was just like WOW!!! So, I am selfish for working my butt off to for trying to save my own life? I informed this person that these transplants do not last for ever (I had mine 20 years which is currently at 14 percent) and that a kidney transplant is not a cure all. You would think us CKD patients we would be working together but instead is get hatters? So not only am I dealing with a failing transplant I also have to try and find a donor on my own and then deal with all the negativity that comes from other sick patients, WOW!! I mean why does the hospital not have a organization to take some of the stress off the patient? This brings me to the topic of paying for a organ? Many people are say "O, it is unethical to pay for a organ" but the question needs to be asked is it unethical for sick patients like us wanting to live? The healthcare system makes tons of money off the backs of US. Examples on how they make money is: the people who come and collect the deceased organs get paid, the people who do all the pre-screening for transplant get paid, all the cross matching in the lab they do they are getting paid, the surgeons are getting paid you know the only people not getting paid in the end is the DONOR or the donor's!!! Do you know how much easier it would be for me as a patient to be able to put some kind of incentive behind giving me a kidney. These doctors run their mouth about "O, a living kidney will last so much longer then a deceased one?" so I said "So, you are stressing this so much I am under the assumption then that you have already donated your extra kidney or you will be willing to sign up to be my donor. LOL and guess what his whole demeanor changed. He said " Well I would have to think about it more I am not sure yet" WOW just WOW. You are basically asking for miracle from these people to donate you a kidney while the hospital is benefiting off of your struggle.

[marcyc NKF Peer Mentor NKF Ambassador]

So sorry things are so frustrating for you right now. Prayers for you. My husband was approved for living donor only because of other health issues. They would not put him on the list. Luckily I was a match and donated to him.

[KevM1]

I cant really complain about transplant team support received, but try being a single male , 49, with most of my once large family deceased (over time) and a now small network of "friends". Add to that, also being a private person who does not like to advertise personal struggles to people and a distrust of social media companies since 2015, so much so that i rarely use it. Having said that, i was healthy enough (a blessing) to do PD for 5 years while waiting, was patient while moving up the list ---they will tell you what number you are in line at each yearly review-- and I received a deceased donor kidney last August. Since, i have read a lot of materials about living vs. deceased donors, the perception is living lasts much longer, but i kept finding people who had deceased donors last just as long. I am sorry you have been mistreated, all I can recommend is have an open mind about all options. -- i DO worry about a second transplant when i am over 60, but seeing older people in that age range or older with recent transplants in the nephrology clinic lobby gives me hope. I also have struck up conversations with recent transplants who are on their second, so that makes me optimistic . Getting back to your issue, some patients on THE LIST have selected an advocate they have recruited who searches for donors on their behalf. This may take pressure off of you. Transplant team is supposed to provide information about that concept. They encourage it. Good luck! I will say prayers for you.

[RUKIDNEYME in reply to KevM1]

Thank you for the information on the advocate part and sharing your personal experience with me. I will research about findind a advocate formyself on my next appointment. Also if you take of that kidney meaning lots of water and always taking your meds it will last you a long time!!!

[Bnfrankovich8715]

I hear you. I was trying to get on the list for a second transplant but no hospital will put me on one because of the fact my first one rejected after a year. Tried 4 hospitals and they all made me go through the work up and told me I’m a great candidate, but then they call the hospital where I got my first transplant they all of a sudden they say NO. WTF!!! My sister even wanted to donate and they talked her out of it. Wait one minute, they talk UP about having a living donor, like you said, but yet they talked her out of it. First off how can they turn away a donor? That’s their choice that they want to donate their extra kidney. But I still would have to be on the list just to even get a living donor. I waited 6 years before I got my first transplant at 25. I am now 31 wouldn’t you think they would want to help a young person out KNOWING how hard dialysis is on the body so what and so forth? But yes they talk up living donation like you can just go to the store and pick one up like an apple. It’s not that easy. I’ve asked the surgeons, social workers, doctors, nurses, dialysis techs, and whom ever else in the field “ Put yourself in my shoes, it’s not that easy” and they say the same thing you asked, I’ll have to think about that one. DO THEY NOT TEACH YOU ABOUT PUTTING YOUSELF IN THE PATIENTS PLACE WHEN YOU GET HIRED AT A DIALYSIS CENTER OR TRANSPLANT HOSPITAL? Well they need too. I’m sorry to hear what your going through but I feel your pain. It sucks and shouldn’t be like this at all.

[RUKIDNEYME]

Yes!!!! Girl I feel you!! I feel like the donor side basically talks out all the living donors that I find to sign up. I understand that they have to tell them the truth about everything (which is fine) but also I feel like they do not emphasize what a great gift they are doing to save a person’s life. I am very sorry to hear about your kidney failing after the first year I would interested to find out why they will not allow you to have another one? And like you said kidneys don’t just fall out of the fing sky and those doctors and dialysis nurses don’t need to talk crap until they are willing to stand up and donate. I feel like everyone wants to play pass the ball/ promblem onto someone else. No one “really” wants to help up but they “hope” the best for you cus they sure is hell not going to do anything for you but just run that mouth about what should happen. Then why don’t you be that person and make it happen. And with the age thing I feel you, I had kidney Failure at 14 and I am now 32