This is such a scary situation! I am so glad you are ok now.
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@rosemarya Great question, as far as I am aware this surgery has only been possible with a living donor. The kidney removal process happens first and the surgeon can't predict how long it will take until they see what they are dealing with inside each patient. Deceased kidney's have a limited time they remain viable so it seems like it is too risky to do without a living donor. Keep in mind I am not a doctor and things are changing everyday.
I chose the time to take my meds based on what would work for me considering when my lab opened and my commute to work. I ended up choosing 8:15am, I could easily drop by the lab, have a blood draw and get to the office by 8:45 or 9:00. Any earlier and the lab wouldn't be open, any later and I'd have to go to work and leave again.
I have a morning and evening alarm on my phone (which is always with me), I set the snooze button for 5mins, I NEVER press the dismiss button until I have actually taken my pills so every 5 mins the alarm reminds me until I've taken them. When I was newly transplanted both myself and my husband set alarms just to be extra sure.
When it is daylight savings time I inch my times accordingly in the week proceeding until the time switches. I would ask a transplant nurse about this before doing it, they know everything and tailor the advice to your specific situation.
When I travel I set new alarms for the corresponding time zone based on the difference.
You are right to control the factors you can because so many areas are out of our control along the transplant journey.
I am thrilled for both you and your wife, what an incredible couple you must be!
I agree it is a lifechanging procedure and required great skill and bravery for Dr. Prieto to attempt. We are blessed to have benefitted from this groundbreaking surgery. I too know PKD patients who have been cut from top to bottom, had to live with no kidneys at all while they healed or endured multiple surgeries (some over the span of years) in an attempt to achieve results like ours with the "one and done". I cannot say enough good things about Dr. Prieto, he is a shining example of the spirit of compassionate innovation which thrives in the talented men and women of the Mayo Clinic.
Congratulations to you and your wife and welcome to the next chapter in your journey together.
All my best, Jolinda
Oct 13, 2018 · Looking for a Nephrologist for a post transplant patient in Transplants
I second what @rosemarya said, I have a local Nephrologist and then go to Mayo annually (or more often if needed). The partnership between my local labs and specialists along with the team at Mayo works out well. I do not live in your area so I cannot suggest a dr. there.
Here is a 5 minute video that will help you understand the importance of having a living donor to undergo kidney removal surgery which helps certain PKD patients. The risks of undergoing this groundbreaking method and the importance of a living donor are explained. Watching this video can empower you with the information needed to explain it to someone who might be suffering like I was.
Sep 30, 2018 · Kidney transplant - The Journey from the Donor's Side in Transplants
You are AMAZING!!! I received a living donor kidney and the transformation for me was immediate. I went from getting sicker everyday to getting better everyday. You can't imagine what a difference your gift is making in someone's life. God bless you for giving someone a second chance. I adore my donor, she is my "kidney sister", today we spent the day with a group of patients who are waiting for kidneys and shared our journeys, she of course is the hero of the story!!! Not only are you helping your donor but EVERY single person on the waiting list moves up one notch because of YOU!!! INCREDIBLE!
Sep 29, 2018 · Double Liver Kidney (LKT) Transplant: climbing stairs in Transplants
@meenusingh Although I had a much different condition than you I wanted to reach out and let you know I had my native kidneys removed at time of (kidney) transplant too. My experience with the surgery and recovery went very well and I hope yours does as well.