Current status
2025 March 23
I was listed for transplant at UCLA in February 2022. Because of the need to get organs from deceased donors into people who need them expediently, deceased donor organ donation is determined by region. This means that the wait time for an organ is determined by where you live. Despite being listed for 3 years already, I would be waiting another 5 years for a deceased donor kidney in Southern California.
Having a living donor would bypass that. There is someone currently undergoing testing. I really hope that works out, but only 1 in 5 people who look into being living donors make it all the way through the process. If you have ever considered donating a kidney, please look into it further. There are so many people who need one. I grew up in a town of 6,000 people. In the United States, there would be 15 towns that size of people waiting for a kidney donation.
I'm trying to cover more bases at this point. You can list for transplant at more than one center, but you have to go through the screening process at each individual center. We just got back from the Mayo Clinic in Phoenix two days ago. I underwent an extensive set of tests over 2 days. We'll see how long it takes them to come to a decision whether I can get listed there. Again, I am still hoping to get a kidney from a living donor. I will add some links to the Mayo Clinic in case getting tested in Phoenix is more convenient for anyone. If getting a kidney from a living donor doesn't work out, I should be able to get a deceased donor kidney significantly sooner at the Mayo Clinic. It will be interesting trying to get there, if I need to go that route. We made it there driving in 6.5 hours when traffic was fairly light. There are many advantages to getting a kidney from a living donor - including better survival rates, but I need to open more options if I want a kidney in less than 5 years.
Having kidneys that don't work introduces all sorts of other health risks. Reduced kidney function leads to being immunocompromised. I am still wearing an N95 mask every time I am indoors in public. I will still need to wear one after transplant because of the immunosuppressant medications I will need to take. When your kidneys don't function, the toxins in your blood can cause complications with other organs. I've seen some effects from this, and the results of the tests that I have seen don't make sense to me. I am looking forward to speaking to someone from Mayo about them once all the results are available and have been interpreted. They also test for a broad cross-section of illnesses your immune system has reacted to. I have some questions about that as well.
Although a transplant is not a cure, having a working kidney -- I only need one -- would bring a halt to a lot of this medical strangeness. I would get back the hours I lose each week to caring for my dialysis site as well as hooking up to and unhooking from the machine. I wouldn't need to store boxes and boxes of dialysis supplies anymore. I would be able to work with students in the observatory without worrying about whether I need a treatment that night. Everything I need for my body to operate would be inside my body again. I really hope I can get one soon.
2025 January 6
Welcome to 2025! I am still on peritoneal dialysis three nights a week, and I am still looking for a donor. Even if people submit the questionnaire -- and thank you again, if you have -- there is still only about 1 in 5 candidates who make it through the screening process. If you are looking to be a kidney donor, your team will do everything possible to determine that you are in good enough physical, mental, psychological, and financial health to make sure it will not impact you. If they find a single red flag, you are disqualified. They are there to protect your best interests. You are also allowed to withdraw your consent to donate right up until surgery. For these reasons, my search will remain active until I have a kidney gifted to me.
It feels good to have the mental clarity and energy that I do again thanks to dialysis. The dialysis cycling machine does sometimes set off alarms on nights when I am connected. Because of this, I often need an additional hour or two of sleep after treatment ends to make sure I am rested enough. I have missed clear night skies on nights when I have treatment. Also, because of the amount of time treatment takes, I don't have the free time to make observations because of needing to use time when I am not connected to prepare for classes I am teaching. I would really like to get that time and freedom back.
There's another aspect of peritoneal dialysis that showed up noisily the other morning. This wasn't an alarm with the cycler, but more like an explosion in our bedroom closet. When you are on PD, you have to store quite a lot of supplies. We had to dedicate an entire closet to solutions, cartridges, bags, caps, etc. My spouse found a way to condense things from that closet into the one in our bedroom. Unfortunately, this overloaded the rod that was supporting the hangers with all those clothes. Metal fatigue set in, and everything came crashing down in the closet while we were sleeping. I'll need to get a pipe for the hangers that has a thicker wall so that it doesn't fail like that in the future. We should probably also install some more braces for supporting that weight. If I can get a kidney soon, there's another solution -- just put the stuff back in the closet that we had to fill with dialysis supplies since I won't need those supplies any more after transplant.
Please help me get the word out. Thank you.
2024 November 9
I had my peritoneal dialysis catheter placed at the end of August and finished my training on how to use it by the beginning of October.
Because I had kidney function left when I started, I only have treatments 3 nights a week. It has already made a noticeable improvement. The brain fog is gone, and my energy levels have recovered. Of course, now there are three nights a week where I am unable to do astronomy, but I can make so much more of the time that I have. I can only imagine how much better it will get if someone is willing to share their spare kidney.
We haven't figured out details of traveling yet. We already tended to fill the car with stuff, and now we need to consider all the fluids to bring, plus the cycler machine (possibly). There's also the matter of having a clean enough environment at our destination. And, since we travel with our pets, there has to be a way for me to shut them out of an area when I hook up and detach. We have not tried a trip since I started. I feel very grateful for all the traveling we got to do during my sabbatical -- even if clouds blocked the view for both of the eclipses we tried to see in 2023-24.
Recently, Karen - who I met through the Renal Support Network - has been advocating for me and getting out the word about my need for a transplant. I am so grateful for her advice and support. She received her kidney in June 2023, and she has been awesome at helping me on my journey for the past few months. If you found my page from her efforts -- like putting my website on a decal on the back of her car, it makes me even more glad that she is investing her time in me like this. Thank you, Karen!
2024 July 20
I was hoping that it would be a lot longer before I had to make this update.
For the past few months, if I did anything strenuous, I would be seriously out of breath for a while. I did a workout where I kept my heart rate above 135 bpm for about half an hour, and I had to sleep for about 13 hours after that. That was the only thing I did that day. I've also been having episodes of mild cognitive impairment. That's particularly disconcerting for me -- an unhealthy chunk of my identity revolves around my mental abilities. I have prided myself on being able to do my introductory astronomy and physics lectures without refering to notes. I can't reliably do that anymore.
I talked with my nephrologist today, and we're going to have a catheter placed in my abdomen so I can start peritoneal dialysis within the next few months. This is better than doing it on an emergency basis, and I still have enough kidney function that I won't need to do it every night. The idea is to extend the kidney function I have left while working to relieve some of the decline I have been experiencing.
When I first went in for my transplant evaluation at the end of October 2021, the surgeon said I'd be on dialysis within a year. With changes to diet and exercise, I was able to make them wrong by about 2 years. It will still be a while before the treatment begins, as there's the surgery followed by training of how to use PD equipment. There's a good video about what's involved from Kristin Rice - a fellow kidney patient. Check out her donor search site. I'm hoping that starting so early gives me a chance to feel like I have my abilities back and extend the time of using my own kidneys while still continuing my search for a donor. You're already here reading this, so thank you. Please help me spread the word.
2024 May 15
As an astronomer, there have been a couple of events I have wanted to see for a long time. A total solar eclipse. The northern lights.
Over the past 6 weeks, I got to experience both (sort of).
Since I am not on dialysis yet, traveling is a bit easier. I still won't fly anywhere -- being in a closed tube sharing air with 100+ other people just seems like a bad idea. My spouse and I packed the car and took our dog with us on a trip from the Los Angeles area to Texas to be in the path of totality. Since I'm on sabbatical, I didn't have to worry about conflicts with work. This is an astronomical observation, so it's part of my sabbatical project, right? After driving for 1300 miles over several days, we were in the path of totality. Skies looked clear enough to get a view, but that changed as the eclipse was taking place. With a minute or two to go before the Sun was totally eclipsed, a cloud got in the way.
Cloud! I did not drive all this way to watch you eclipse the eclipsed sun!
Even though it was blocked visually, I was still shooting with a camera and somehow managed to get this picture. This took a considerable amount of luck, considering I had no idea what settings to use with a cloud in the way. We got to visit with some cool people (outdoors) on the way there, and we went to a whole bunch of national parks on the drive back. There was a lot of driving, and I was pretty exhausted by the end, but it was great to get to experience this with my little family. (Apologies to the cat, since he didn't get to go too.)
Southern California is not know for having the aurora borealis in the sky. Heck, it's even a pretty rare treat for most of the population of Canada. However, the Sun had a giant sunspot and threw a magnetic fit last week. That launched a bunch of plasma at the Earth that did not play nice with our magnetic field. The tangle between this cloud of charged particles and our atmosphere drove the northern lights far to the south on the night of May 10. Where we live was socked in by clouds from the marine layer, so again, my spouse and I and our dog got in the car with a bunch of camera equipment. This time, we only had to drive two hours to the mountains north of LA. Back when I had the energy to pack all my telescope equipment and spend the whole night, this is where I would go to take pictures of celestial objects. Holy cow, this was incredible! To the eye, it was a faint, colorful dancing haze that occasionally got brighter and showed some ribbons in its structure. If you clicked that link, you can see how the camera picked up so much more.
As far as astronomy goes, it's been a great couple of months -- even with El Niño limiting what I can do. I've learned a lot more that I can teach students, and we'll have an observatory on campus that more faculty will be able to use since I have been writing a how-to for it.
Kidney-wise, things are pretty much the same. My last labs showed slightly lower function, but it seems to bounce around a bit over time. Over the past year, it has been as high as 24% and as low as 15%. I'm still watching what I eat, and I need to get back to more regular exercise. My team keeps asking me to look for donors in the Southern California area. Anyone interested in donating and helping me get back to the energy level that I need to help students as much as I would like to?
2024 March 25
I know I have been quiet here lately. Over the last few months, I have had people begin testing to be a donor. I am very grateful for those who did. The health standard for donors is very high -- the team that handles your side is looking our for your long-term health, so anyone who qualifies has to be in excellent health. The donor team also makes sure that donating fits your life circumstances. It's a time-consuming process, so I appreciate anyone who even starts it. Unfortunately, I was informed about a week ago that I have no active donor candidates right now.
I have been on sabbatical this past year, which has helped me maintain what function my kidneys have. I can set my own schedule and rest when I need to. Tests for the past few months show my kidneys functioning at or just below 20%, so I am not moving toward needing dialysis right now. However, I will need to start teaching full-time again in the fall. Although I have been granted a lot of flexibility before, I am not certain if that will continue. I look forward to having more energy again, which should come with getting a transplant.
As another reminder, I will wrap up with a nod to the Kidney Exchange Program. It can really help to get the best matched kidney to the right person, and it enables more transplants overall. Even if you are not interested in donating to me, consider participating so that another person with kidney disease can get help.
2023 November 9
As of today, I do not have any donor candidates. A few people have made it through the questionnaire and are seeing what the next steps are. I am very grateful that anyone is making this effort.
After meeting with my kidney doctor today, it looks like we'll move to surgery as soon as we can after some qualifies as a donor. Previously, we thought I might have enough kidney function left possibly to delay surgery a while longer. The trend in my lab work shows that it would be better not to delay. I am still not on dialysis, and the idea is to have a preemptive transplant so that I won't need dialysis. My long-term health prognosis is improved in that case.
If you are considering donating a kidney -- to me or to anyone else -- please consider the Kidney Exchange Program. This can ensure that the best kidney ends up with the best matched patient for anywhere from two up to a chain of many people. Overall, this increases the chances of success and longevity for all people who need a transplant. It's still strange to me that we can interchange parts like this, but a program like kidney exchange can make a positive difference in what happens years after the surgery for a multitude of kidney patients.
2023 September 2
As of today, I do not have any donor candidates. There is one person who may have started medical testing.
I was re-evaluated at UCLA at the beginning of August and am still active on the transplant list. Lab work is trending toward needing to find a donor sooner.
2023 June 25
As of today, I do not have any donor candidates. There is one person who is starting medical testing.
It seems I was dealing with an infection for most of this past month. I am recovering well from that, and my kidney function has rebounded some. I still need to find a donor. I had been doing everything right. At doctor appointments over the past year, I had my nephrologist and my primary care physician tell me to continue with the habits I had formed. I still ran into issues and had my kidney function drop as a result. Even if I can get fully back on track to where I was, this past month has made me aware of the precariousness of the situation.
It's one thing to know you're at high risk for kidney failure due to chronic kidney disease. It's a very different feeling when you start researching dialysis options, thinking that it might become a necessary step in the next few weeks. How many ways would I have to change my routines to accommodate dialysis? What is the prognosis for me on dialysis vs. getting a transplant? There is a lot of stress involved in considering the implications, and this past month made me realize there's a lot less of a barrier to me facing those implications than I had previously thought.
There are still students I want to teach. I want to go back to teaching in person. I want the longer time that I'll likely have on this planet that would come from a transplant as opposed to any other option for dealing with kidney failure. It would be a huge relief to know there is someone who can help me when the time comes.
2023 June 8
As of today, I do not have any donor candidates. A few people have looked into donating a kidney to me, but were ineligible. I do not know whether anyone has gone as far as starting medical testing.
You may notice that it has been a year since I updated anything here. I made a lot of changes to my life to reduce the chance of progression of chronic kidney disease. Two years ago, I had 19% kidney function and weighed 230 lbs. I changed my diet. I started exercising. Since the beginning of COVID, I have been working from home. I stopped going to concerts, museums, and other public gatherings. I don't eat indoors at restaurants. If I do meet with other people, they take tests, and we all wear masks. I appreciate how the people close to me have looked out for me this way. Developing an illness that would put a strain on my kidneys was one way that could quickly raise the importance of finding a donor.
Two years ago, the new diet and exercise regimen helped me lose 30 lbs. in eight months. I switched my diet to be more plant-based and overall lower in protein. I started watching my potassium intake very carefully, since that had been an issue in the past. With all of that effort, my kidney function climbed back to 26% two months ago. Maybe I could just keep going this way, and I'd never really need this site.
Over the past week, I've been sleeping more than 12 hours a day. I can't regulate my temperature well and feel cold all the time. I generally feel sore and weak. My tests from this week showed my kidney function at 15% -- the lowest it has ever been. Two weeks ago, I could go for a 2 mile walk with no issue. Yesterday, I had trouble using the treadmill at low speed for 5 minutes.
It could have been a new medication; it could have been an infection. I don't know what happened. Chronic illnesses are tricky, and they can be unpredictable. I am going to do everything I can with diet, exercise, and other habits to try to build kidney function again. However, at this point, I need people in my corner in case that doesn't work. I would be very grateful for anyone reading this who completes the questionnaire, and if that goes well, to continue with the tests to see if they could be a compatible donor.
2022 June 1
As of today, I do not have any donor candidates. A few people have looked into donating a kidney to me, but were ineligible. I do not know whether anyone has gone as far as starting medical testing.
I met with my nephrologist (kidney doctor) 2 weeks ago. She let me know that my kidney function is holding steady. It is better to continue with my original kidneys for as long as possible, but identifying donors now will make the process easier when the time for the transplant comes. I am not currently on dialysis. Barring unforeseen circumstances, it might be quite a while, however a bad case of the flu or any other serious illness would very likely drop my kidney function to where I would need dialysis. I would be very grateful to know that there is someone ready to help.
If you are looking to help a kidney patient by donating now, there are other people who will need a kidney sooner. For example, there is the Kidney Chain at the University of Alabama at Birmingham. You could also click through the Featured Stories on Save One Person to find someone who needs a kidney more immediately. There are numerous efforts to get the right kidney from the right donor to the right patient. You could be part of a group like this one that helped kidney patients across six states.