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8 hours ago · Living Donor Process in Transplants

They are slow! You need to call back. Your sister can not call for you. The recipient team doesn’t communicate with the donor team.

Wed, Sep 4 9:59am · Confused Recipient in Transplants

I would like to know if I have a list of altruistic donors. Do I need to continue my plea for donors. Are they talking/scheduling someone for testing. Are they pro active in getting someone to come in. Do they move on immediately if they don’t get a response from a potential donor.
Can I ask them to put a specific donor that I know that has recently come forward to the top of the list for consideration.
Why can’t they let me know any of these questions without revealing specific details.
Who do I speak to from the recipient team that can shed any light on my quest. Is there a liaison between the two groups to find out what’s going on.
How many donors do I have in the list. Some I know, others could be strangers.
I understand that the donor team is an advocate for the donor. I would just like to know if they are working with someone and the status.
If someone says they can’t donate until next year, do they move on to the next person.

I am trying to have my transplant before I need to go on dialysis. I only have until the end of the year, I think. Next blood test is the end of the month.

Tue, Sep 3 10:47pm · Confused Recipient in Transplants

I have been on the list for two years. I have made a few trips with potential donors to find due to testing, they were not a match. I get that. It’s hard but reality.
I’m taking great care of myself. I’m a vegetarian and staying healthy, thank you. My husband will be my caretaker. We are all set. He was to be my donor then found out he had a mass in his kidney and the following week his kidney was removed.

My frustration is my team told me they weren’t testing anyone and the same day they told a potential donor they were “speaking” to someone at this time. Can they communicate with each other? I’m not asking for names, just hope! Why can’t I be in the loop regarding that? Maybe I don’t understand the HIPPA laws that can’t let you know what’s happening regarding your own life.
I would like an advocate that I can keep in touch with. Maybe I should be calling my social worker? I adored her.

I’m happy to hear you feel the donor team is actively working with my potential donors.
I also have PKD.

Tue, Sep 3 8:19pm · Confused Recipient in Transplants

I’m awaiting a transplant. I have people that have offered to donate. I called my team to find out what is happening. They asked the donor team if they have someone they are testing. I was told, “Not at this time.”
At the same time, a potential donor for me called the donor team and was told they are speaking to a woman at this time.
Why different answers? Why can’t I find out about the progress of finding me a donor? This is very frustrating. I understand there are privacy laws, can’t I just be given updates? Why can’t the team let me know my status, how many are on the list, etc?
I’m hoping to get a transplant before I need to start dialysis which will be by the end of this year according to my nephrologist.

Thank you for your input.
Susan

Sun, Mar 3 9:37am · Waiting for a kidney transplant in Transplants

@tomkrush You are so fortunate you have living donors that are family members!

I’m waiting for an altruistic living donor.

My advise is to make an appointment now at The Mayo, Phoenix. You do not need to wait until your GFR is 20. I started at 24. I’m now at 18.

Fri, Mar 1 9:56am · Anyone have tips on sun protection? in Transplants

@jolinda I do wear a hat, but also use eltaMD UV sport Broad Spectrum SPF 50. In contains zinc but doesn’t leave you “white”. It’s light and you do not get any color. You do not feel like you have to take a shower for the way it feels. They have a tinted one for the face too.

Wed, Feb 20 9:57am · Hi I’m scared for my liver transplant in Transplants

@shelly68 Suggestions below are great. Also, do a Go Fund Me campaign.
Good luck!

Tue, Feb 19 10:01am · Waiting for an altruistic donor in Transplants

@mickj This is for a deceased donor? How many on the list that bring a living donor to the table?