Meet a Donor - Story #2: Brian

Another friend connected me with her cousin, Brian, a great story of a donor's experience...

1.        To whom did you donate and what was your prior relationship?  I donated my kidney to Gary  on 1/12/2017 (can’t believe it’s almost 3 years now).  I did not know Gary previously but I did work with his mom once at a prior employer.

2.       What motivated you to donate?  Gary’s mom (Helen) sent an email to a bunch of colleagues and friends letting them know that she was retiring to move back to Denver, CO to be closer to her son (only child) who had a rare kidney disease and was on dialysis.  My wife happened to be on the email distribution list and she sent it to me as an “fyi” as she thought it was a sad event.  After reading the email I also felt sad for Helen and her family and noticed that Gary was the same age as my middle son (26 at the time).  I simply thought that if it were my son I’d be begging for someone to help so I sent her an email and asked about the testing process. That original email is transcribed below – it obviously did the trick for me!

3.       Did you have any doubts or fears?  I have to admit that I was a little naive about the whole process since I had never been in the hospital in my whole life.  I even still have my tonsils and wisdom teeth!   But my children were all grown so I was not really fearful of the surgery itself.  My only real concern (seems silly now) was how much work would I miss.  Having said that, my wife, children and parents were very concerned and most of them did not want me to go through with the donation.  They felt that since I didn’t even know Gary that I shouldn’t take any unnecessary risks with my health.  But I did my research and assured everyone that although it was not a routine surgery by any means that it was relatively safe and that the outcome for Gary would be unmatched by any short term pain for me. 

4.       What was the process leading up to donation?  The initial step was the completion of a simple questionnaire – I believe that was over the phone.  Once that hurdle was crossed I needed some blood work.  Since Gary lived in Denver, CO and I lived in Atlanta, GA I did the blood work at my local hospital and they sent on the results to his doctors in Denver.  After a short wait I was advised that my blood work was a match and that if I was interested in going to the next step they would keep me on a short list – which I obviously agreed to.  They then reached out about 10 days later and said I’d need to fly to Denver for a more detailed set of tests.  That resulted in me going through the most complete and detailed physical I’d ever been through – including a nuclear stress test.  Since I was over twice Gary’s age that was a concern initially so they needed to make sure I was in good enough shape to make it through the surgery (especially my heart).  I passed all the tests and was back “on hold” as they were testing one other individual as well.  Then the fun begins…..I received a call telling me “thanks but we won’t be needing your kidney as they have another donor who is closer to Gary’s age” so that was that – I thought J!  Then about a  month later I received another call from the hospital saying that the first donor had changed their mind and wanted to know if I’d still be interested in donating my kidney as they already had a surgery date scheduled in about 30 days.  I’d told them I’d do it and they arranged for the pre-surgery tests.  I then flew back to Denver about a week after Christmas for the final prep work.  I flew back home to Atlanta and then back again on December 11^th where I met Gary for the first time – at dinner at the hotel restaurant we were both staying in. 

5.       Where was the surgery performed?  The surgery was at  University of Colorado - Anschutz Medical Center.

6.       What was the surgery experience like?  As mentioned earlier – I was pretty naive about the whole thing.  The surgery was on a Thursday morning and I thought I’d be able to make a conference call scheduled for Friday afternoon but that never happened!  It was an uneventful surgery on my part – took drugs and went under – they took out the kidney – I woke up in a hospital room.  There were no complications with me but later that night there were some complications with Gary and he was rejecting the kidney at first – which led to them performing emergency surgery and they fixed the problem – what a relief. 

7.       What was the recovery like?  When I woke up Friday morning the nurse had written my “goal for the day” on the white board and it said “get out of bed”.  Needless to say that didn’t happen – nor did I make my conference call J.  I was pretty wiped out that first day and didn’t do much but sleep.  I ended up checking out of the hospital on late Sunday afternoon but had to stay at a friend’s house until I was cleared to fly home – which was Friday (a week after the surgery).  I really didn’t do much that week except lay around and watch TV and sleep – and checked a few work emails.  I was able to start working from home the following week.  I normally have a traveling job but had to put that part of the job on hold for about 30 days.  I took it easy on my gym workouts and after 4-5 months I was back at my pre-surgery workout level (weights and endurance).   

8.       Any other reflections on your experience?  I really haven’t had any repercussions from the surgery – it’s as if it never happened.  I do still keep in touch with Gary and his wife (and Helen and her husband) – we had a big party at the one year anniversary where I met a lot of his friends. 

9.       What would you say to someone considering donation?  Overall I’d say it was a great experience and one that I would highly recommend.  In fact I wear a “Donate Life” pin on my jacket lapel for work all the time and if anyone asks me about it I give them an earful!  There aren’t many  opportunities to really make a difference in someone else’s life and I was grateful to have the opportunity to do that for Gary.

Here is the communication between Brian & Gary's mother, Helen.  Her letter hits very close to home for me...

Hi Helen – thanks to some friends, Sharon and I were forwarded your email on your son’s health.  We’re so sorry to hear what your family is going through and wish you the best.  Once you figure out the testing process I’m certainly willing to see if I would be an acceptable donor. 

We’ll be thinking about you!

Brian

From: Helen (Gary’s mother)

Dear friends, family, community, and loved ones, AKA – “Helen’s village”

I have always believed in building villages and these past 2 weeks have reaffirmed for me personally the value of those villages. I just never thought I would need the village to support me in the way it has. I always thought my role was to mobilize villages to help others.  So, to my village, here is an update on where we are as a family and how you can help if you wish to do so.  And you have my permission to pass this on to anyone else who you know is interested in an update on what is happening in our family.  I also want to apologize if this is a repeat, but various people in my life are at various stages of awareness in terms of my son Gary’s health and his new journey toward a needed kidney transplant. So please allow me to start from the beginning and provide information on where we are right now and what comes next.

I saw Gary in San Diego at the end of July at a wedding where he was a groomsman for his best friend who was the best man at his wedding 2 years ago.  It was a wonderful weekend, but Gary was experiencing some gastro intestinal issues.  They continued for the next few weeks and when I saw him 3 or 4 weeks later in Denver he had lost 20 pounds.  All indications pointed to an intestinal virus of some kind. Thankfully he saw his Primary Care Physician (for the first time) on Monday August 22^nd, and a U/A showed high protein and blood, which we thought was a kidney infection. The blood work came back 2 days later and Gary was admitted through the ER to the hospital with acute renal failure. We now know that he has nephropathy (nuh-FROP-uh-thee), also known as Berger's disease.  It’s a kidney disease that occurs when an antibody called immunoglobulin A (IgA) lodges in your kidneys. This results in local inflammation that, over time, may hamper your kidneys ability to filter wastes from your blood.  The problem is that he has likely had it for a long time, and he now only has 10% kidney function as a result. He had no other symptoms that would have indicated a kidney issue was present.  He is in End Stage Renal Disease (ESRD) and will need kidney dialysis 3 days a week till we find a live donor for a kidney transplant. Waiting for a kidney on the national kidney transplant list would take up to 4 years. We are told that with live donors it could be as early as 4 months. I’m on a mission to beat that average!!!  Don’t mess with the mom of a sick kid, she is powerful beyond measure.

Gary came home from the hospital last night, and is adjusting to life with failing kidneys.  I am confident we are all going to be eating a healthy renal diet in support of him over the coming months. It can’t hurt, we will likely all get a lot healthier.   Well, I might still eat red meat and bananas, but a lot more vegetables that’s for sure.  Gary and Kristin are very upbeat and have great attitudes about this whole thing.  Not knowing was clearly the worst part. Now that we know what we are dealing with it’s a lot easier on everyone’s spirit.

He should be able to get back to work, once he adjusts to the regularity of dialysis. He has been referred to the University of Colorado and Anschutz Medical Center for transplant, and he should have that first consult in a week or two.  Once he has that appointment, we will be able to share a lot more information with friends and family about the process of being tested for a match for a kidney transplant. Obviously his mom will be first in line and his dad second. Most of Gary’s friends and his family members are already asking where to go to be tested.  I wish I could share that with you now, but we need more time to get information on the process.  And of course we will be eternally grateful to anyone who is willing to start that process.  I have learned a lot about it over the past few days, and I’m incredibly impressed with the advancements in kidney donation. 

I’m in Denver this week, but returning to Atlanta very soon and getting my head back into “normal” life and day to day activity.

We are all doing well and we are grateful for everyone’s thoughts and prayers.  I’m confident that all that positive energy, white lite, prayer, and community support helped in many ways. I know it lifted my spirits and comforted me to know how many folks were keeping me, my son Gary and our family in their thoughts and prayers.

My hope and my objective is to see if we can find Gary a healthy kidney and a strong match by Thanksgiving (his birthday is Nov 21).  It’s aggressive, but heck, stretch goals are always good, right?  If you are willing to be tested, let me know and I’ll keep you posted on how that process works. I don’t think I’ll have details on that front for a few weeks.

Thank you again for all your support this past week.  I have the most amazing village and I am deeply comforted by that fact.  You have my permission to share this as needed. I’ve had a tough time keeping up with everyone who has reached out wanting to know how they can support us.

Helen