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Tue, Sep 3 9:49pm · Confused Recipient in Transplants

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?


Mon, Sep 2 5:47pm · Post kidney transplant issues in Transplants

@lindajo Glad to hear you are tough! He's blessed to have you.
As a side note the Vitron C had a side effect that should help your hubby's loose stools. Bonus.
Pleae make sure he is drinking enough it ups your blood pressure and flushes toxins out.
Good luch and be good to yourself.

Mon, Sep 2 5:42pm · Navigating conflicting medical opinions to be your own advocate. in Visiting Mayo Clinic


To be clear I think it was preparation meeting opportunity in my case. I eliminated everywhere that said, "no", and Mayo was my last shot at it possibly happening. The surgeon I had was brilliant and it was his techniques, courage and empathy for my case that made it possible. Without a living donor to give me a kidney none of this would have happened. I'm blessed to have had such a gifted surgeon and such a generous donor. My part mostly entailed being sick and stubborn! 🙂

Your story turned our so well. What advice would you give to someone who is coming to Mayo who is hurting and scared, someone who was told they couldn't be helped somewhere else?

Mon, Sep 2 4:28pm · Post kidney transplant issues in Transplants

I would tire very quickly after kidney transplant. Mayo had me take Vitron C which is an over the counter Iron supplement because my hemoglobin was so low which can make your oxygen low. Maybe ask if it is ok for him to take. Once he is stronger physical therapy might help too, it's a tough process to go through everything he has had to endure. Meanwhile how are you doing? Are you resting and taking care of yourself?

Mon, Sep 2 4:23pm · Navigating conflicting medical opinions to be your own advocate. in Visiting Mayo Clinic

You are such an inspiration! I am so glad you kept fighting. Thank you for sharing your journey.

Sun, Sep 1 9:31pm · What do you do when your temperature goes Up, Up,..? in Transplants

So glad you listened to your body and took action.
Get better soon, keep us posted if you are up to it.

Sun, Sep 1 5:37pm · What do you do when your temperature goes Up, Up,..? in Transplants

Call it in! The doctors on the Mayo line are awesome, just tell them you wanted to be safe rather than sorry. They may send you to the ER or Urgent Care but at least then you'll know it is the right thing to do. If you need antibiotics they can tell you what is safe to take. They set up the call system so we can access the help we need, especially if we are afraid. The Mayo team wants your liver and kidney transplants to last for decades, call them, you'll feel better and they will know exactly what to do.

Sun, Sep 1 8:33am · Can’t sleep in Kidney & Bladder


I hope as I write this that you are sleeping soundly. I'm so glad you decided to write to the community and address us with such raw honesty, very strong. It is easy to pretend that things are ok when they aren't and much braver for you to speak your truth. Cancer is a devastating disease, one which has shaken you to the core. Be mad, be sad, but never give up. This whole community is here to listen and support you, we've all faced diagnosis' which we hated, ones which weren't fair, ones which we didn't deserve, ones which came with side effects that changed our lives forever. I don't know your situation exactly but I know what it's like to face a new reality after a major illness, we are all right here with you. You've made it this far so I know you are tough!

I read a little about Sutent the drug you are on and the side effects can be rough. You need to let your team know ASAP that you are not doing well and that you are feeling changes that don't fit who you are. Who cares if it's a holiday weekend! Call them! Get the care you deserve. I recently read about a sleeping medication that lasts for only a short time called Sonata maybe they can prescribe it for you so you can rest finally. You deserve to feel well. You deserve to live your best life, not your old life but your best life. Please consider calling your team.