Donor Testimonials

 Early in the morning of January 25th of this year (2023), I checked into the hospital at the University of Colorado to have elective surgery. I had never had a surgery before, so I was understandably anxious and fearful about what I was about to do. However, my overriding feeling at the time was determination…I was determined to go through this surgery because of the possibility of what the surgery could do. In a little over an hour, they would roll me into an operating room, remove my left kidney, put the kidney onto a plane to Rochester, NY, and then put that kidney into my nephew, Tito. Our hope was that this kidney would provide a life-saving treatment for Tito so that he could get off of dialysis and get some semblance of a normal life. Unfortunately (as evidenced by you reading this post on this website), through no fault of his own, Tito’s new kidney failed and he is in need of another kidney. I wanted to share my story in the hopes that my experience could help someone along their path of choosing to be a kidney donor.

In June of 2021 we found out that Tito needed to go on dialysis. He had been having health problems over the previous number of months and we were shocked to hear that he had to go onto dialysis so soon. At the time he was tentatively asking friends and family if anyone was willing to be a donor. I took a look at some online documentation about the process and about halfway through one of the pamphlets I started feeling dizzy…my heart was racing and I had a cold sweat. There was no way I could donate if I couldn’t even read through the pamphlet! Besides, I had elevated blood pressure and obstructive sleep apnea for years and our family had a long history of high blood pressure, heart disease, etc. There was no way I would qualify as a donor. I decided the best thing I could do would be to get Tito a number of supplies to help with his dialysis treatments and see if there was anything else he needed. It felt a little wrong not to look into it further, but I let my fears and justifications keep me from taking any further action.

That all changed when I saw Tito a little over a year later. He had flown out to Denver for a kidney awareness fundraiser in the hopes of finding a kidney donor. We live about an hour away, so we decided to drive up and spend the day with him. I was in for a rude awakening that day; I didn’t know how much I would learn about dialysis and kidney disease in one afternoon! My first impression when I saw Tito was “wow, he’s gained a lot of weight.” I didn’t say anything about this, of course, but it was my first inkling that something wasn’t right. I found out later that many patients with ESRD (end stage renal disease) retain a lot of water weight because, duh, their kidneys aren’t functioning and they can’t process the water out of their systems.

We went to a restaurant for lunch and Tito was visibly uncomfortable the whole time we were there. He kept saying that he felt really hot in the restaurant. It was a little warm, but definitely not warm enough to call it hot. It turns out that patients on dialysis also have a hard time regulating their body temperature; they tend to have higher body temperatures than people who aren’t on dialysis. Who knew?

Later in the afternoon we went to a museum to hang out. We figured it was a chill enough activity that it would be something that Tito could do. We split up, my wife and kids went off to do their own things while Tito and I would slowly walk around and hang out. No offense to Tito, but it was REALLY slow. I mean, “walking around with your grandfather pushing a walker” slow. Even though we were walking at a snail’s pace, Tito had to sit down to rest every 10-15 minutes or so. He was also getting overheated despite the ample air conditioning in the place. We finally found a quiet spot in a nautically themed blue room with some benches along the wall. It was here where I decided that I needed to see if I could become a kidney donor.

We finally had a chance to sit and talk, just the two of us. It was a life changing conversation for me. I think I made a comment about how hard it must be for him with the altitude change and his kidney disease. He then kindly explained that regardless of the altitude, he always felt worn out ever since he started dialysis. Yes, the dialysis treatment does a good job of removing the built up waste in your blood, but it pales in comparison to what even a single kidney could do. A kidney is in your body 24/7 and is constantly filtering out the waste products your body produces. Dialysis treatment, on the other hand, only occurs for a total of 12 hours in a week. The rest of the 156 hours in that week, the waste products build up in your blood. Dialysis is, at best, a stopgap measure to keep a person with ESRD alive until they can get a kidney. It was no wonder Tito was so exhausted!

It broke my heart to see Tito in this state. This was a kid who smoked me on a bike ride that we took together on my last trip to Rochester before the pandemic. I always prided myself on keeping physically fit and I could barely keep up with him when we went on that ride. Now, he could barely walk through half of the floor of a museum without having to take a rest. I resolved to myself in that room that I needed to see if I could become a donor.

When we returned to our house that evening, I told my wife what I was thinking. She wasn’t surprised. She saw how badly Tito was doing and it was obvious to her that something needed to be done. She told me to think it over for a few days and see if I felt any different about it. A few days passed and I was still willing to give it a shot. So, I went to the University of Colorado Living Organ Donor website, filled out a form and started the process.

Over the next couple of months I went through the most comprehensive set of medical tests I’ve ever had in my life. I had kidney function tests, a boatload of bloodwork, MRI with contrast, multiple chest x-rays, electrocardiogram, echocardiogram (yes, those are two different things), glucose tolerance test, and a 24-hour blood pressure test. If you’re curious just how healthy you are and want to get everything checked out, volunteering to be a kidney donor is a good way to do it!

Despite my elevated blood pressure (which had been well controlled on medication), sleep apnea (for which I regularly use a CPAP), being slightly overweight, and persistent bradycardia (slow heart rate), I was considered a good candidate to be a kidney donor. These things that I thought would disqualify me from being a donor were mild enough that the doctors weren’t concerned. It’s important to note that the surgical team reviewing a prospective donor’s health is not just looking for anybody who barely fits the criteria to become a donor. The reason is that each transplant center has to keep statistics on the post-surgical outcomes for both donors and recipients. Every failed transplant or donor complication counts as a black mark against the center. They’re incentivized to only choose donors which present with a high likelihood of success.

A quick side-note about being a match to a person. It is almost more beneficial if you aren’t a direct match and are willing to participate in what is called a paired-match donation. There is a nationwide registry which matches kidneys for incompatible donors and recipients. Participating in this program could start a chain reaction of kidney donations which could save multiple lives, not just Tito’s life! What’s better, without the restriction of having to be an exact match to your recipient, they can often times find a better match through the nationwide registry. Here is a website with more information on paired-match donations: https://www.kidney.org/transplantation/livingdonors/incompatiblebloodtype.

Participating in a paired-match donation or even donating across state lines should enroll you in a program called Donor Shield (https://www.donor-shield.org/). This program will pay for lost wages for surgical recovery, pays for donation-related travel and lodging expenses, gives you priority if you ever need a kidney, reimburses you for complications from your surgery, and provides legal support in case you are wrongly terminated for your donation or denied healthcare coverage for the pre-existing condition of having one kidney. It’s a fantastic program, and I wish it were available to anyone who donates a kidney. I was lucky enough to get enrolled because I wanted to stay in Colorado for my surgery and recovery.

I could go on and on about the testing process, the actual surgery itself, and my recovery, but this is a long enough post that I fear that I may have lost most readers. Maybe I’ll write other posts that go into those details. The short of it is that I was out of the hospital the day after my surgery and back at work in two weeks. I was also walking 1-2 miles at that time. I was driving at 3 weeks post-surgery. By 4 weeks, I started riding my bike on my indoor trainer. At around 8 weeks I started playing tennis again and was doing 5-6 mile hikes in the mountains. I’m basically back to my normal routine, minus one kidney. I have monthly appointments with my doctor since we’re trying to find the right medication balance to control my blood pressure. Ever since the surgery my blood pressure has been elevated a little more than normal. However, this was something I knew was a possibility going into the surgery, so no surprises there. The only restrictions that I really have post-donation is that I need to watch my salt intake, eat less red meat, and not participate in contact sports like rugby or hockey. I already knew I wouldn’t be playing rugby or hockey anymore (they’re too rough on my body) and the salt/red meat restrictions are going to be good for me in the long run. No real losses there.

What weighs heavily on me is that while my life is pretty much back to normal, Tito is back to square one. The kidney was doing great for the first 6 weeks and then through no fault of his own, the kidney failed. Knowing what I know now, I would still have donated my kidney to Tito. The change in my lifestyle has been minimal, yet there was a chance to make Tito’s life so much better. If I had another kidney to give, I would do it again in a heartbeat. I would be happy to talk to anyone if they have questions about my experience.

-Luis B.

 In the beginning days of the COVID-19 pandemic, I had a chance encounter with a co-worker as we were packing up our cubicles in order to start working remotely. It happened that he mentioned that he was looking for a kidney donor, as he had been on dialysis for a few years. As luck would have it, we were the same blood type and it seemed that I might be a potential match. The initial testing consisted of blood and urine tests for me and did not rule me out as a potential donor. The next round of testing was non-invasive and included more blood tests, a GFR test and a painless echocardiogram. After a few phone interviews with doctors, my advocate team and a psychological evaluation, the decision was made in October to go ahead with the transplant. Unfortunately, elective surgery was not being scheduled in the early days of the pandemic. However, shortly before Christmas of 2020, we were given a green light and the surgery was scheduled for February of 2021.

The surgery lasted a few hours and my hospital stay was two nights.I was walking around by the end of the 1st day. By day two, I was able to get out of bed by myself, shower and walk on my own. I stayed with my brother and his wife for the first week because I needed some assistance with moving and lifting, but I was able to walk a mile by the end of the first week. By week two, I was living on my own again and walking 2 miles. There was some localized pain for the first few days near the incision but the pain was very well controlled - even without narcotics.

I was able to return to my office job within 2 weeks from surgery. Follow up appointments were roughly at the 1 and 2 week mark, followed by 1, 3 and 6 months. Lastly, a 1 and 2 year follow up.

My overall recovery was uneventful and I was able to return to all of my normal activities within several weeks (swimming, running, cycling, weight lifting), though intensity and duration was limited at first. Within 6 months, I was fully recovered with no restrictions. I was able to resume more aggressive activities such as skiing and mountain biking the following seasons. However, I was told to refrain from high contact sports having an increased chance of kidney strikes.

The only long term effect is a restriction on NSAIDs such as Advil, though Tylenol is allowable.

I have never regretted my decision to donate a kidney. I found the experience to be rewarding and extremely worthwhile. The biggest consideration for me as a donor was the potential lost wages for taking time away from work. I was able to use paid time off in my case, though some employers may provide additional time off at no cost to the donor. My donor advocate was very clear from the beginning about expectations and considerations. As well, the donor advocate was always willing to answer questions and provide a safe environment for me as a donor.

I would recommend the process to anyone who is able and willing to make a difference in someone's life. It is not simply one life that is changed; all the loved ones of the recipient, their families and their friends all benefit.

-John G.