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Hi Susan,
I am sorry this had been so frustrating, it's tough to wait when your life is on the line! I know because I've been there. A few things to keep in mind...
* insurance only allows for one person to be tested at a time this is NOT something the center control
* anyone who has high blood pressure, diabetes, heart issues, or are overweight, etc. will not make it through the process
* as Ginger mentioned, some people say they are calling in but don't
* some people can't get their spouses or family to agree to let them donate
* often potential donors are healthy enough to donate but don't want to be part of a swap if they aren't a blood match
* donors can learn half way through the process that they have health issues
* only the donor themselves can choose to keep you informed
When I needed a kidney (due to PKD) I was surprised how many donors came forward but didn't make it through the whole process. Many people go through 5, 10, or more before they find a match. Trust me the center wants you to have a successful living donation and they will work very hard to help you.
In the mean time control the things you can control! Follow EVERYTHING your doctors tell you and stay healthy. The flu or a bad cold can quickly drop your kidney function. Stay away from sick people, illness can alter your immunity.
How are you doing otherwise? Are you on a restricted diet at all? Do you have a caregiver lined up for transplant? How are you feeling?
Jolinda
Replies to "Hi Susan, I am sorry this had been so frustrating, it's tough to wait when your..."
@jolinda you obviously know a lot about the whole process that potential donors must go through.
Do you know what the psychological requirements are? If a person had been treated for depression would that eliminate them?
JK
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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.