Steven’s Story

Site created on February 21, 2022

Stevens kidney transplant journey started unexpectedly last July. A simple Doctors appointment to discover the cause of his migraines turned into a diagnosis of end stage kidney failure, the need to go on immediate dialysis through a central line in his neck, and placement on the National Kidney Registry in hopes of finding a life saving kidney.  Although dialysis is a life saving treatment, it is also a life changing one. For dialysis to be successful, serious life style changes need to be made. No phosphorus, no potassium, and little to no sodium, which leaves just a small pool of fruits, vegetables and fresh meats to eat,  the liquid restriction which  is 1500 ml  ( 6 cups ) a day, along with following a medication schedule 4 times a day that involves 30 pills.  Currently three days a week Steven needs to go for dialysis treatment that lasts  around 4 hours and every 7 minutes his entire volume of blood is recycled through a series of tubes and filters and put back into his body. Crashing blood pressure, large amounts of  medication, weekly diet changes, fatigue, and the unknown of when or even if he could get a kidney from a donor have been our constant companions. It has definitely been a stressful, overwhelming balancing act and a constant roller coaster ride of emotions.

And after what has been a tortuous wait, just like that we have a live donor and a date for a new kidney, thus the reason for setting up this site. We are venturing into a new unknown and this is the most effective way to keep friends and family updated on this journey as the first few weeks we will be adjusting to a new normal, a lot of new medications and  going  on many  follow up appointments to make sure this new kidney gets the best chance of success. We are required to stay in Rochester during the first 2-4 weeks after Steven is discharged following the surgery to be as close to the Mayo as possible for monitoring.

We are deeply grateful for the love and support we have received from family and friends since this journey to a new kidney started. It is hard to explain just how far a simple text, phone call, care packages and cards help someone survive the daily struggle of living with a serious disease and all the overwhelming range of emotions that  accompany it. 

Newest Update

Journal entry by Michell King

At this point we are probably closer to our 3-month update than we are the 2-month update on Steven. No matter how many blogs or articles I read, or people I talked to could have prepared me/us for the recovery period after the initial surgery. At first the days are consumed by new medication schedules, vital screenings for fever/rejection, incision care, healthy diet and routine Dr. appointments and blood draws.  Then, after a few weeks, you get to breathe a little easier. Things come into a routine and blood work numbers are improving, the kidney is doing a kick ass job and Steven was moving a little easier and there was a little calm that hadn't been there in a while.  I really wish I had taken more time off from my job to fully enjoy this period of time. I thought Steven was the only one that needed healing from surgery, dialysis and the hardships and constant stress of the past 18 months. Now I realize we both had healing to do, albeit in different ways. I won't dwell on the caregiver side of things too much as this blog is dedicated to Steven's journey, though for anyone else in a similar situation, please take time for yourself to recover too. So much of our energy is focused on getting our loved ones better that we can leave ourselves too little to run on. 

The kidney is doing an amazing job!!! So much so that Steven is working on all his documentation that is required for him to return to his full-time job and the Fire Department as well.  Every week he is getting stronger after not being able to really exercise because of dialysis. He is on bi-weekly blood draws now that his anti-rejection medication levels are where they need to be.  Our next big appointment is at the end of February where the Transplant team will do a mandatory biopsy of the kidney and perform a full work up to see how things are progressing. 

Our donor is just about back to where he was pre surgery! His girls keep him busy with hockey and he is going to calls on his fire department.  It's really amazing when you take a moment to think about it seeing how hard body goes to work to heal itself after his donation surgery and with Stevens transplant surgery. Every day is gift to enjoy because of their selflessness.

Thank you for the many Christmas cards we received. Please accept our apologies for not getting our cards out in time to send back. We completely underestimated the perfect storm of me going back to work, Steven's recovery, and Holidays all at once. We still have a pile that are ready to go so if you receive a thank you note with a Christmas tree or candy cane on it, you know what happened lol.

And always, thank you for the messages checking in on him.
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