National Kidney Month

Happy National Kidney Month! I encourage you to think about your kidneys, and so does the National Kidney Foundation. If you haven't done so recently, please get your kidney function checked out.

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I saw my nephrologist Dr. Taiwo yesterday and asked if there was anything I could to to prevent my IgA from acting up again. She advised that I think about staying on my 5mg dose of prednisone, since it's an anti-inflammatory and could help keep the IgA at bay. They tend to taper it off since it's a steroid and has potential side effects, but I will give it a try and take it for as long as possible.

I also mentioned to Dr. Taiwo that my friends have been noticing how my face has been looking rosier than before. She reminded me I had been slightly anemic before the transplant, because my failing kidneys were not producing enough of the hormone erythropoietin (EPO), which bring about red blood cells in bone marrow. These red blood cells carry oxygen throughout the body, and contain hemoglobin, a red protein with iron. My hemoglobin level on increased from 9.8 on December 20 to 14.3 today. The standard range is 13.5-17.7.

In short, I was looking and feeling better because of the red blood cell rising to normal levels thanks to my new kidney.


After my appointment, I waited for my car to return from valet, I noticed my surgeon Dr. Melcher on his cellphone, walking down the hall. As I smiled and waved at him, an older white man sitting nearby did the same.

After Dr. Melcher passed, I said, "He was your surgeon, too?"  

"Yeah, I got a new kidney in December."

"Congratulations! I got mine December 20."

As we continued chatting, I learned that he too, was immensely grateful for the benefits of our transplants.

"Did you do PD or in-center?" I asked.

"I did PD for seven years." 

 "Ah, I see you're also a Satellite Wellbound patient," I said, pointing at his tote bag. "How are you feeling?"

"I'm feeling good! And it's great to look for your PD catheter at night and realize, 'It's not there!'"

I laughed and said, "Yeah,  I thought I might miss it or the cycler! But I really didn't."

He frowned and shook his head. "Nope!"

 

 

Notes from the Transplant

It's been over 2 months since the kidney transplant. I continue to do well in these last official recovery days before returning to work in mid-March. I see my nephrologist every two weeks and get blood tests weekly. I have just a little bit of tightness, but am walking a lot and the kidney continues to work well. Jason has gone back to work and feels great!

Here are my overdue recollections for the events around December 20, 2017.


December 19

The surgery was scheduled for the 20th, but Jason and I needed to check in to Stanford Hospital the day before to prep with blood draws and final tests. We also needed to meet with the teams of doctors (surgeons, nephrologists, nurses, dietitians) that would be taking care of us.

Our friend Sam is a photographer who graciously offered to document our hospital stay. We met up with him that afternoon as well. Please see his beautiful photos!

Thank you Sam!

Thank you Sam!

Jason and Melanie arrived shortly after I'd checked in. Everyone was wearing their Super Kidney shirt. We spoke to our transplant coordinators, walked to our separate but nearby rooms, and changed into hospital gowns.

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Next item on the agenda: blood draws, urine samples, pre-surgery EKGs and chest x-rays. Nurses connected IVs to us. Our surgeon, Dr. Melcher, marked his initials on Jason's right side with a Sharpie to indicate the correct kidney to be removed.

Another nurse helped me hook into a PD cycler as I lay in my hospital bed. For dinner, we ate our clear liquid menu items of beef broth, jello, and fruit ices, which all tasted pretty good. 

Our families and friends came to visit. Seeing them and Jason's daughters' posters with inspirational messages made us smile and tear up.

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December 20

We woke up around 4:30am. Jason's surgery was scheduled for 6:30am. I walked over to his room, where we chatted and hugged before he was wheeled away to the operating room.

While Jason was in surgery, I found myself filled with a lot of giddiness, and used it as fuel to tell some of my most comedic personal stories to Linda and Melanie. The one about the time I called AT&T as my Aunt Kathy to make some cell phone account changes always gets a laugh.

I had told Linda that I was a little nervous about the surgery and the potential risks, but that it helped to try to see it from the surgeons' point of view and how for them, it was just "another day in the office." Sort of like how I would come into Symantec every day and help build web pages, they were going to remove a kidney from my friend, and install it inside me! No biggie, even if it actually is. 

As well, my recent trial of a meditation app, Headspace, and one of the lessons in it, was helpful prep for me and all the thoughts that were popping up. Basically, Headspace talked about how meditation training can help us get more used to simply watching and accepting the constant traffic of our thoughts, without getting as invested in all the traffic. Here's their video explaining this idea:

Around noon, we heard that Jason was out of surgery and recovering well! What a relief. The kidney was in good shape, and I would now be heading into the OR soon. My parents and Linda accompanied me to the pre-operative area, where I met my anesthesiologist, a friendly Indian-American man. He gave me something to help relax me, but not completely lose consciousness.

Before I entered the OR, for some reason, "I Dare You," a song by the xx started to play in my mind. It's positive song with a beautifully calm but strong sound. I guess it fit my mindset at the time, and I'm grateful I can play it again now to relive that feeling of hope as I went into surgery. "I can hear it now, like I heard it then," as the bridge goes.

When I got inside the highly-illuminated OR, I no longer had my glasses on, so everything and all the nurses and doctors looked blurry, but incredibly bright.

The room was large and filled with lots of equipment, way more than I expected.

I asked my anesthesiologist, "Whoa, is all of this going to be used?"

"Ummm, yeah," he replied.

Then they lifted me from the hospital bed onto a skinny operating table. I closed my eyes and soon lost consciousness as the anesthesia did its thing. 

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I woke up groggily around 6 or 7 pm. I was in a recovery room along with several other folks recovering from their surgeries. The nurse told me that the transplant went very well and my new kidney was working as expected. I also noticed my PD catheter had been removed. It was all a big relief to know Dr. Melcher and the team had successfully equipped me with one of Jason's kidneys!

As I was now in the post-surgery recovery phase, I noticed a lot of medical devices attached to me. These included wires, IVs, a foley catheter, and a JP drain for collecting blood and other fluids from around the surgical site.

Later, they moved me into the room I would stay in. I had a window overlooking ER parking, but didn't look out of it much. I felt very weak, but better than before. My parents and a few friends came to visit with balloons and flowers, and Linda lined them up nicely on the windowsill. Some of my volleyball friends are Stanford Hospital nurses, and they gave me a warm red blanket, slippers and a mug, all with the Stanford Health Care logo. I got a lot of use out of that blanket, and Linda made sure to later get one from the gift shop for Jason's own hospital stay.

Most patients that get new kidneys report a surge of energy right away. I didn't feel this, unfortunately. Mainly I felt tired in the days immediately following the surgery.

Even though I was exhausted, sleep could be a struggle. The nurses - all awesomely helpful and attentive - had to come visit during certain times throughout the days and nights to take my blood pressure, temperature, and give me medicine. Sometimes the IV lines would get twisted as I moved, causing the monitors to beep and forcing me to alert the nurse to fix it. One of my IV injections was done closer to my wrist, and when I needed to get phosphorous injections through it, those would sting, making it hard to sleep. Other times, a patient suffering from severe pain down the hall would moan or yell loudly and continuously.

Because the room often felt a little chilly at night, I kept covered with a few blanket layers. I also wore special electronic stockings that periodically massaged my calves and ankles to help prevent blood clots. These leg warmers/massagers would invariably make me too hot. I'd wake up to peel off a blanket and un-velcro the stockings to offer my sweaty legs some air. This routine would continue over the next couple nights, until I decided that I didn't need to use the stockings any longer.

 

December 21

I remember having more energy that day. With the help of an excellent physical therapist, I rolled myself up into a sitting position, stood up out of bed and slowly walked a bit. I was on pain meds, but still felt sore and weak, so I had to concentrate on each step. The PT walked with me and held onto my IV pole as I took a lap around the hallways, glancing at the posters of Van Gogh irises and photographed landscapes. Suitably fatigued from the pacing, I returned to bed.

A lot of friends came by to visit that afternoon and evening. It was great to see everyone, receive their gifts, and prove that I was doing well with a smile and thumbs-up for our photos. I'm grateful people took the time to wish me well in person, along with all the texts and social media support.

 

December 22 

I got my diet upgraded to include puréed foods, so for lunch I tried the carrots that were just a little firmer than baby food. They were ok, but didn't seem to mix well with my pain meds. When my family came to visit, we took some photos in which I can tell I look a little nauseated, like I have a kind of worried smile. Sure enough, my mouth started to salivate and taste funny. I motioned for Linda to grab any kind of barf container, and I quickly vomited in the ziplock she gave me. After that I just needed to rest and so everyone except Linda went outside. 

I felt a little better later, and a few service dogs happened to pass by the room, to the adoration of my family. One small dog did some tricks like "praying" by putting both its paws together. Its trainer asked to see a box of kleenex, so we handed her one from my room, and the pup pulled out tissues from the box with its mouth, one after the another. Cute as this was, Linda and I thought it was a little unhygienic, especially in a hospital ward full of immuno-compromised patients! 

Later, Melanie wheeled Jason in to visit me in my room. This was the first time I'd seen him since he went to the OR. I hugged them both from my bed, and Jason and I held hands as we discussed how the experience was going for each other. He sounded like he'd been having a rough time of it the day before, when he wasn't able to walk and mostly stayed in bed. But he felt much better now. 

As we talked, I recalled something Sam had mentioned to me a couple of days ago. "Jason must really love you to do this. He has three daughters, and now he'll be with one less kidney. That's just incredible."

The reality of Jason's gift and generosity really began sinking in as we chatted. He had been all smiles throughout this process, and continued to be so positive. I privately recalled my desperation from a couple years ago, when I wasn't sure how to go about asking my family and friends to consider donating one of their kidneys. Then there was the subsequent, rising hopefulness as Jason initially stepped forward and kept passing tests until he was somehow, miraculously, a match. Some sadness washed over me as well, understanding that he'd now have the pre-existing health condition of having one kidney. But mainly I felt so much happiness, appreciation, and love for Jason, my wonderful friend.

At some point, I just broke down and cried as I thanked him. After a few sobs, I told Jason, "I really can't thank you enough. Giving me a kidney -- You can't fake this sort of thing!" I told him. We laughed and as I wiped my tears away, someone in the room started to hand me a tissue box. Suddenly, Linda intercepted it.

"No, those are dog tissues!" she exclaimed, pulling out the upper layers of possibly contaminated tissues to drop in the trash. Hey, if you've just had a kidney transplant, you can't be too careful! We laughed some more and got together for a big family portrait. 

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December 23 & 24

One of the last things the doctors wanted me to do before I could be discharged was to make a bowel movement. It turns out a major surgery traumatizes the intestines, making it really difficult and painful to poop for quite some time. I had taken many frustrating visits to the toilet, some laxatives and even a suppository, but still nothing. On Christmas Eve, however, I made some progress finally, plus my blood pressure had improved enough, and I was allowed to go home.

Before we left, we gave the nursing staff some chocolates and placed the last of the Super Kidney magnets we'd made on my patient whiteboard. All of the nurses and doctors had taken such good care of me during my five-night stay, and I was and remain grateful for their patience and expertise.

 

Post-script

For my hospital stay, I realized I had brought way too many books and clothes. I had never really changed out of my hospital gown, and hardly touched my sketchbook or journal. I hadn't watched much TV or my iPad. We had brought a lot of snacks that I never ate. Mostly I wanted to sleep, and that's what I did. So, if you ever have a scheduled kidney transplant, my advice is don't overpack! Unless you get that boost of energy that most transplant patients say they get and aren't as sleepy and tired as me.

Here's a list of what I did read and listen to while at the hospital:

Recovery: 4 Weeks Post-Transplant

It's been 4 weeks since Jason's transplanted kidney started my new lease on life. Many thanks to Linda's and my parents' incredible care, the surgeons that consult with me during my kidney clinic visits, and the support from friends everywhere. Every day I feel more reborn and rebooted!

Overall, my body is doing great with the new kidney. They removed my PD catheter after the kidney was transplanted, and I don't have to connect to a dialysis machine overnight, 7 days a week. I no longer experience occasional ammonia sensation in my breath and mouth. The slight headache I used to have is gone. I've stopped applying lotion to my face a few times a day, because it no longer gets so dry. My hands feel less cold than before.

 

I'm eating well with a good appetite, and drink lots of water to keep working the kidneys going (they didn't remove my old kidneys; I now have three). I'm taking longer walks with less hobbling. I've felt well enough to see figure skating at the SAP Center one night and on a different afternoon, to try the Impossible Burger at GOTT's - it was pretty good. 

The pain around my abdomen is at 2, sometimes 2.5. The surgical glue on the incisions have fallen off, and the scars are healing up nicely. Typically, people with new kidneys report feeling like they have a ton of energy right away. I can't say I felt this way at first. I actually felt quite weak, probably because of the surgery's toll on my body. However, I am feeling like I have more energy now, and I don't get tired as quickly. I still have to nap, but less than before.

Dietwise, I now get to eat more phosphorous and potassium! That means more nuts, dairy, fruits, and chocolate. Since I'm on immunosuppressant drugs, I have to avoid certain foods that at higher risk of contamination, like raw fish and undercooked meats. I wish I'd known about that so I could have had a last bowl of chirashi, but obviously, that's no biggie in the scheme of things.

I am not lifting anything heavier than a gallon of milk. I haven't started driving again yet. On rides to Stanford for clinic follow-ups, I place a small pillow across my stomach before fastening my seatbelt, to help with the painful jostles from bumpy roads.

At these clinic visits on Mondays and Thursdays every week, they take blood samples and run tests on them. They adjust the dosage of Prograf and Cellcept - my anti-rejection, pro-accepting meds - as we get the balance right. The doctors also check on how my incisions/scars look. Starting soon, I'll be tapering down my frequency of clinic visits to once a week for a month, than maybe once every two weeks.

Anyway, that's a quick update. I still need to talk about the surgery day itself, the thoughts and emotions surrounding it, and the initial post-transplant days recovering at the hospital. Thanks for reading!

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Guest Blog by Jason: Month 12...Surgery Time!

The year began with Niem and I having ramen together with the mutual hope that we would be a match for an improbable miracle. We’re now less than a week away from what then, seemed like a dream and now, could give him a new lease on life. It’s been touching and inspiring to see the support that our community has generated behind us and our families through this amazing journey.

I’ll admit that as the date draws near, nerves start to play a larger role than they did back in the “hopeful miracle days” of this process. Unannounced pangs of nausea shoot up and down my body simultaneously reaching my cranium and belly at the thought of being cut open and sewed back together.
 
I’ve always been a nervous wreck when I think of pain or hear stories of other’s painful experiences. It’s odd to be in a profession and reach a level in it that works to resolve some of the worst discomforts out there and yet, be so averse to hearing about them. It’s an irony that never escapes me.

I’ve come to reason, recently, that there’s no real way to prepare for pain that’s forecasted to take place in your body. You can’t exactly practice being in it and expect to get better at enduring it when its inflicted on you. Every time I bump my elbow on a drawer or get an oven burn, it hurts just as much as it has every previous time before that! I just don’t see a day that stubbing my toe on the fireplace bricks will be something I just smirk at and walk away from without nearly doubling over.

The dilemma I face is the unnecessary pain to my otherwise pain-free self. Not a choice I often opt for but Niem is one of my best friends and he means the world to me. When it comes to those I know and love, I feel obligated and blessed to contribute positively to their lives.

That doesn’t mean I haven’t taken a few trips down ‘sudden panic town.’ It’s happened on more than one occasion and the most helpful exercise, it turns out, has been to talk to others about the upcoming surgery and be open about my feelings. Everyone responds so well to the surprising news when I initially tell them and, after seeing my own enthusiasm for it, gives me warm-hearted support. The barista at Philz coffee will ask about the upcoming date as much as my co-workers will provide words of encouragement.

Melanie and I have loved involving our three daughters through this process and their welcome positive responses have been one of the most wonderful miracles we’ve experienced. The most challenging part is still on the horizon with the support they’ll need to handle the emotions of their papa being down and out for a little while. We’re doing our best to prepare them. I hope they can learn, as I have, that a miracle worth seeing through can start over sharing ramen with a friend.

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Guest Post by Jason Garcia, Month 10

I’ve learned a valuable lesson in my journey to becoming a kidney donor: people perform small acts of kindness and minor miracles everyday! From the medical clinician’s attempts at easing the occasional fear of needles to how the Stanford Hospital staff has gone about conducting themselves in such a professional yet compassionate manner. Even as we reached out to our friends and family to help raise money for my post-surgical recovery, our goal was met in under two months!

I feel I’m going to walk away from this having received more than I’m going to be giving with the love everyone has shown and the kindness people are demonstrating. It feels more like a community coming together than just Niem and I going at this on our own.

I made the decision to become a donor because I truly feel we are all meant to support one another. Sometimes, stepping outside of our own needs and comfortable corners to see how we can give of ourselves in creative ways is required.

I’ve noticed that the nurses, doctors and phlebotomists I’ve worked with are all doing their job but they’re also serving an important role in their communities. They’re at the forefront of where compassion is needed most and a caring approach is invaluable. I can easily say that every single medical staff member I’ve had the pleasure of seeing has a deeper connection to compassion than most other people I come across.

It’s evident that whole villages of support are erected when the need arises and people choose to give of themselves. To everyone who stepped forward to be a part of this miraculous occasion with your financial and personal support, we can’t thank you enough. Even with the curveball life threw my best friend, everyone has been able to rally behind our flag and be a part of it.

It’s good to remember that humanity’s acts of kindness far outweigh the other end of the spectrum which can be thrown off by what our attention span tends to gravitate towards on our Twitter and Facebook feeds.

These next two months before the surgery, somehow, bring a sense of excitement to me. Close friends have begun lending their support for my eventual recovery. There’s a great app out there that itemizes the tasks that we’ll specifically need help with which people can sign themselves up for...are you kidding me! Pretty amazing as far as being there for someone is concerned.

A big THANK YOU to all of you who donated to our fundraising campaign and helped us meet our goal!!! Who knew I’d be learning just how much hearts can open up when they’re nudged by the need for their compassionate support? My family and I feel blessed to have all of you in our lives! We look forward to what these next two months will bring…

Dinner with a Transplant Recipient and His Donor

In my August 3rd post, I mentioned D, a fellow kidney patient whose story is similar to mine. He was in need of a kidney and someone stepped forward to donate one. We’ll call her K. She was a direct match for D, just like Jason for me. Their transplant took place at California Pacific Medical Center at the end of last year.

D had offered that Jason, Linda and I meet up with both him and K to get some insight into their transplant experience. We gratefully accepted and had dinner together on the 16th of September at an Italian restaurant in San Mateo, home of what would turn out to be some of the tastiest petrale sole to grace these lips.

As we sat down, D relayed to us one of the most important pieces of advice: Make sure we ask for a morphine pump to help manage the post-surgical pain. They also suggested we ask for anti-anxiety and sleeping meds if we found them necessary. All good, sound advice.

A told us the surgical team offered that her nephrectomy, or surgical removal of her kidney, be conducted with a laparoscopic technique through her belly button, rather than the traditional open surgery. Laparoscopic surgery involves a tiny camera and a laser and no big knives. A said that the belly button option is less invasive and advised Jason to go for that.

A got into surgery around 5 am, with D waiting in the wings until she was almost done with the procedure before he was brought into an adjacent operating room a little before 9 am. He happened to see the surgeons take her removed kidney and wash it! Then, he was placed under general anesthesia.

After the transplant, one minor shock for D was the foley catheter attached to him. Someone must have failed to mention he would be getting one. This catheter is the one most people probably think of when they hear the word “catheter” - a tube which passes up the urethra into the bladder. It is uncomfortable, but it's also needed for draining urine and helping the bladder heal. It stayed in for the entirety of D's hospital stay, about 4 or 5 days. As for K, she stayed in the hospital for 3 days post-surgery, but she didn't need a catheter. Upon hearing this, Jason sighed in relief.

As part of D’s regimen of immunosuppressive, anti-rejection meds, he took a lot of steroids. They prescribed 120 mg of steroids at first, which led to the occasional ability to close his eyes and "see" what he described as "pulsing energy." The steroids also amped his appetite. He constantly ate and gained 30 pounds in a month. Now he's down to 5mg for the steroids, which means no more such vivid sightings.

Some other side-effects of the meds were difficulty sleeping because of all the extra energy, and some gastrointestinal issues. The meds also made him sweat a lot at night, while he lay in bed. Not something I’m looking forward to, but it’s good to know beforehand, so I can do my best to prep for it.

For both D and A, their recovery required them to take things easy for a while, as you would expect. They weren't allowed to lift anything heavy for six weeks.

D suggested I follow all of the doctor's orders. "Don't worry about rejection. Focus on getting through the first six months, and going to all your appointments. You'll need to drink lots of water, so set an alarm. Don't expect to go back to the life you had before. Try to eliminate stress."

Incidentally, when he says lots of water, he means LOTS of water...4 liters a day immediately after the surgery, continuing to this day!

A added, "It's really just the stuff we should all be doing, just more so."

D also wanted to make the point that "the health teams don't personally go through what the patients do.” In other words, they’re giving the care, but of course, can’t know how it’s being received, which can present challenges. He was speaking in particular about how a nurse was once removing his tubing a little more roughly than D was accustomed to, and so D told him, "Hey, I'm a real person here, can you slow down?" This helped the nurse take a moment and adjust his frantic pace.

As we wrapped up our conversation, an older woman, who'd been sitting at a table near us, approached A from behind.

"Excuse me, I wanted to tell you that your table was awfully loud. In the future, please be more respectful of others when you're in a public place. We had trouble enjoying our meal because of you." She started to walk out the door with her group.

I was stunned. Admittedly, our discussion had included some jokes and laughing, but there hadn’t been a real clamor. I shook my head but stayed quiet.

Jason wasn’t struck so dumbly, however. He piped up, "Well, you could've said something earlier, and not waited until you left!" I thought to myself, “Yeah!” The woman still looked indignant, but she didn't reply. As she exited, D chimed in, "Yeah, that's not problem-solving, that's just complaining." This was a good line, and I wrote it down in my notebook. If D had been like the restaurant lady when the nurse had been messing with his tubing, and he’d only spoken up after he’d left the hospital, what good would that have done?

In any case, this unexpected interruption almost spoiled the good vibes only moments before. Fortunately, as I asked if Linda could take a photo of our group (not for the blog, but for the sake of our personal memories) I mentioned that I thought that the lady had originally come up to A to congratulate us on our overwhelming and inspiring good-heartedness.

I told the group, “I imagined she was gonna say, ‘I couldn't help but overhear your wonderful story, and just wanted to congratulate you.’”

As it turned out, everyone else had half-expected this as well! We’d all anticipated a verbal commendation when instead, we got dressed down. So, we all had a big group laugh, and in the photo, we have huge smiles. Pretty funny. The whole thing made me think that people tend to live in their own bubbles, and not really hear what their neighbors are really discussing and as a result, can’t appreciate what they’re going through.

I feel fortunate to have been able to connect with A and D, two amazing people who have been through the surgery we’ll soon be undergoing, and do understand. Getting their first-hand accounts on their transplant experience helped Jason, Linda, and me in ways we couldn’t have anticipated. We can’t thank them enough for their generosity and time.

Traveling and Dialysis

I love traveling, and being on dialysis, you'd perhaps think it would be much more difficult for me to take trips. Luckily, it's totally do-able. I continue to connect to my dialysis machine, AKA the cycler, every night, same as always. I just have to bring along the cycler and all necessary medical supplies.

I can even hop on a plane. I’ve flown twice since starting dialysis. The most recent trip was a lovely summer vacation this year to Seattle, and the first time was Coachella 2014 for three music-and-fun-filled nights. Both times, after checking it in, airport security had opened up the cycler’s specially-built, extra-durable luggage to inspect the heavy, printer-sized device, and both times, the machine came back to me none-the-worse-for-wear, nestled on the inside cradle with a prominent notice card proclaiming that the hard-working TSA had been there.

The important thing for flights is to call Baxter two months in advance, and let them know the address of where you’ll be staying. They will deliver the dialysis solution bags there. I always ask for a couple of extra bags, just in case I get a faulty one.*

Traveling by way of automobile is even easier. You just need enough room in the car for the bags/boxes of dialysate, in addition to the machine and all supplies.

Having said that, the first few times I took overnight trips, I forgot to bring bleach to disinfect the showerhead at the hotel bathroom, or liquid soap to use on my exit site while I showered. Once, I even forgot to bring my portable urinal for overnight peeing - the length of the tube from the cycler never reaches far enough to get to the bathroom. Luckily, plenty of Targets lay near the roads to Yosemite, Half Moon Bay, and Point Reyes, my past automobile trip destinations.

Here is my Travel Checklist:

  • Cycler
  • Solutions
  • Surgical masks
  • Mini-caps
  • Alcavis high-level disinfectant
  • Disinfecting wipes for table/surfaces
  • Sterile gauze 2x2’s
  • Medipore tape
  • Lap pad
  • Scale
  • Blood pressure cuff
  • Binder of home record log sheets
  • Paper towel roll
  • Portable urinal
  • Cassettes for the cycler (this contains all the tubing that go to the dialysis bags and my catheter)
  • Drain bags
  • Flexi caps (In case you need to stop a running machine for any reason, you attach a temporary flexi cap to the tubing)
  • Bleach
  • A plastic takeout container to hold the bleach-water mixture and the showerhead to disinfect it

It's not a short list, but, if you’re new to PD and are wondering how it might affect your traveling, I would tell you that it’s totally possible.

 

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*This is an uncommon event. Of the approximately 1,400 dialysate bags I’ve opened since starting dialysis, I’ve had just three damaged bags that had to be disposed.

Guest Post by Jason Garcia, Month 6

Six months of hospital visits, medical exams and many, many blood draws later and I’ve been 100% cleared to donate a kidney to my best friend, Niem! My hope for procuring him one was no further than an arm’s reach away all along :-)

The medical exams I passed these last few month were a chest X-ray, a psych eval and an MRI to decide which kidney they’re going to choose and map out a route to get to it. As it turns out, my lung water content is in balance, mental faculties are up to snuff and we’re going with the right one. After having my body’s health and inner workings scrutinized in more ways than I thought were possible these last six months, it’s satisfying to know it’s primed for the task of having a major organ removed from it to donate to a friend.

With over twenty-five years of friendship behind us and having shared in some of life’s greatest moments, I feel blessed to have the opportunity to be there for Niem. He is one of the most amazing human beings I know. There’s nothing more enjoyable than going to a concert with him, attending one of his family BBQ’s or just having dinner together. The fact that we’re a direct physiological match raises the question on whether friendship is tied to biology at a degree we have yet to fully understand.

Coincidentally, John Oliver covered a story on the history of dialysis in the US recently that details how Richard Nixon’s signing of a bill into law in 1972 committed our government to bear the expense of dialysis and kidney transplant surgeries that’s quite intriguing. As Oliver put it, “Essentially, we have universal health care in this country for one organ in the body!”

It’s because of this that our pre-examinations are paid for by Niem’s insurance as much as yours would be, which also covers the cost of the surgeries and follow-up visits. What’s not covered are my family’s expenses from the 4 - 6 weeks off of work I have to take to recover from the surgical procedure. Being the sole provider for a family that consists of three adorable little girls and a wife who started nurse practitioner school this year puts me in a position that I have to raise those funds on my own. I’m reaching out to my friends, family, and community to please show your support by donating to my fundraising campaign in order to cover those expenses.

Our surgery date is set for December 20th of this year, and outside of securing my family’s financial needs, all I’ll have remaining is to prepare my body for the physical undertaking ahead of me. As my nurse coordinator simply put it “the less there is to cut through, the easier it’s going to be for you.” Thank you for your support, thoughts, and prayers!

If you’re interested in donating to Jason Garcia’s fundraising campaign, please visit his Gofundme page at https://www.gofundme.com/jasonandniem to make a contribution. Your generosity is appreciated and will go a long way in making this miracle a reality! If you want to read about Jason’s journey through the testing you can visit his posts on my blog at http://www.niemtran.com/?tag=Jason

 

Satellite's Lobby Day

Last Thursday, my Satellite Healthcare office held a "Lobby Day" for PD patients like me to speak to folks on in-center hemodialysis. Some hemo patients might benefit from switching to at-home peritoneal dialysis, but we weren't trying to make a hard sell for PD. The goal was to give people an opportunity to learn more about it from a variety of sources. 

In the lobby for Lobby Day: 

  • PD Nurses and patients
  • Social Workers
  • Medical stand with a manual PD bag
  • Dummy torso with a PD catheter
  • A heart model with a hemodialysis catheter
  • Home hemodialysis machine
  • Peritoneal dialysis machine
  • Floating mylar balloon that said "Welcome!"

I spent a few hours there, and it felt nice to be able to share some of my experiences on PD with the hemo patients. I was impressed to hear fluent Spanish from one of the social workers as she acted as a translator for one of the patients.

I was also glad to meet D., a patient who received a living donor kidney from a close friend of his. We had actually talked before, over the phone, when he'd been interested in knowing more about PD. He'd been on hemo and I'd given him hints on what to expect with PD. Now, it was me getting a first-hand account of his post-transplant experience. 

Some interesting things about D.'s life after his transplant nine months ago:

  1. Right after the transplant, he was expected to drink 4L of water daily to keep the kidneys working. Now, it's down to 2L daily. He carries a big metal canteen everywhere. He feels bloated often and has to use the bathroom frequently, as you'd expect. Which is great, because that means his kidneys function!
  2. Full recovery for him and his donor took about two months.
  3. He feels like he has much more energy than before.
  4. For three months post-transplant, he was tasked with wearing a medical face mask as often as possible, so as to prevent catching anything that might hurt his already-weakened immune system. He had to stay away from pets, babies, and obviously, anyone that might be sick.
  5. Right after the transplant, he took 20 anti-rejection pills a day and 20 of them a night. Now it's down to 10 in the daytime, 10 at night.
  6. The meds caused him to feel a lot warmer and made him sweat profusely, even at night.

D. and I also talked about recent stories in the media about kidney disease, like the KQED Forum episode with nephrologist/kidney donor/writer Vanessa Grubbs and John Oliver's takedown of for-profit dialysis clinics like DaVita. We both expressed relief that Satellite was set up as a non-profit organization! 

Since it was a slower day at the clinic, there weren't too many hemo patients to talk to. This worked out ok for me, as I got to ask for more insight into post-transplant living, courtesy of D. Thanks, D.! And thank you, Satellite Healthcare, for putting on Lobby Day and for all that you do for your patients.

Today I Learned:
Satellite's name comes from it originally being a satellite unit of Stanford Hospital's. Dr. Norm Coplon, a director of renal care at Stanford, founded Satellite Dialysis to be an outpatient renal care unit. The first center opened in San Jose in 1974, with the goal of creating as home-like an environment as possible, complete with LA-Z-Boy recliners and Sears TVs for patients to watch while they were treated. They concealed medical supplies in drawers and cabinets instead of metal shelves. And they even had a smoking area! What a weirdly unhealthy time it was. Did you know/do you remember how even airplanes used to have smoking sections? 

 

Satellite Healthcare's Extramural Grants Program (EGP)

On April 20, I had the opportunity to be part of a working dinner at Oveja Negra in Santana Row, San Jose. The dinner was organized by Satellite Healthcare's researchers for the Extramural Grants Program. As one of four dialysis patients, we were asked to give our feedback and rankings on six application proposals for projects to benefit folks like us.

As the researchers mentioned, historically, much of Satellite's funding would go to lab experiments and proposals that might take years to fully develop and test. Despite this monetary and time investment, projects like these would often only yield a "once-in-a-blue-moon" success. So, the researchers decided to try something different, and allocate a certain level of funding for projects that might be of benefit now, and thus provide measurable "wins" for patient health that wouldn't take years to discover. Sounds like a good idea to me! As part of their research, they wanted input from real patients.

I'd like to thank all the folks I met that night: the patients, doctor, and researchers were all terrific. I'm glad my awesome nephrologist, Dr. Graham Abra, recommended me to be part of this discussion. 

 

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Oveja Negra is inside the Hotel Valencia. All the food was good, but the best item was the fish! I believe it was cod. 

Guest Post by Jason Garcia, Month 3

In many ways, it is the job of the kidney donation nurse coordinator to try to rule you out as a candidate. Enduring major surgery under general anesthesia to remove a major organ requires that the medical staff test your health and suitability in every possible way. Being supremely healthy is an absolute requirement.

So far, I’ve had to be a blood type match, have my glucose levels, blood pressure and cholesterol checked, pass an ultrasound screening of my kidneys and bladder, share enough antigens and be a cellular match with Niem to get to my big test day at Stanford. This is a medical evaluation which includes a 24-hour urine collection, blood draw, second urine sample, meetings with the nurse coordinator, doctor, social worker, and EKG and chest x-rays.

The big test day was scheduled for a Wednesday, but in reality, it started a day earlier. I had to collect all of my urine into a medical-grade container for 24 hours. It was also recommended that I drink at least eight glasses of water during the collection period, so I had to make sure to be extra hydrated.

The least conspicuous bag to carry the urine container turned out to be our kid-friendly pink and gray cold-insulated tote bag. Besides that challenge, it wasn't too difficult to manage collecting my day's output. That is, until I realized I had already filled 3/4 of the jug after just six hours.

What doubles as a medical-grade container when in the middle of your workday? A large water bottle of course, but should it be a liter or a gallon? I went with my most doctor-y hunch and opted for the latter, so as not to have to repeat the procedure. Somehow, I managed to also squeeze it into the tote bag, along with the three ice packs I kept in there. In case you’re wondering, I have a deep love for Niem and as much as you might be cringing at hearing this story, I can tell you that it takes the sort of commitment you’d have for a close family member to get through this whole process.

I was at Stanford’s medical facility by 9AM and went right in to drop off the jugs. I got a little smile when the nurse looked at my makeshift medi-vessel and she commented that it was a good choice. First, I had to pee into a cup and then I had a record twelve vials of blood drawn! I did surprisingly well and even chatted with the phlebotomist, but I felt a little woozy as soon as she put the gauze and tape on my arm. A deep, sharp, but short-lived pain panged at the bend of my elbow. It cleared up pretty quickly but felt like a rather ominous start to my test day.

Melanie arrived just in time for our meeting with the nurse coordinator at 10AM with Lily, our five-year-old, following close behind. After putting on a movie for Lily, we dove right into all of the details that a surgical candidate must sign off on. Marilyn, my nurse coordinator, covered everything there is to know about the pre-op prep, surgery, post-op, follow-up appointments, possible risks, probable outcomes, long-term effects, and answered every question we had. It was reassuring to see that every detail was discussed openly and professionally, while all along making it clear that I could walk away from the whole thing at any time.

As we wrapped up that first meeting with Marilyn, I started feeling those two bananas I had after my blood draw were probably not enough to hold me over. It was all I had eaten since my dinner eighteen hours ago when I started my fast for the blood draw. I tried eating a few bites of a ham and cheese croissant sandwich I brought before the doctor walked in, but it wasn’t too tasty. I asked Melanie if she had some ibuprofen because I was starting to get a mild headache, and managed to pop them in before the nephrologist came in.

He said he usually only met with the patient, but was okay with my wife and daughter being there for a few minutes. I could sense his discomfort. But, as soon as Melanie asked some questions, he answered them to her satisfaction. Unbeknownst to everyone, I had told Mel, who’s been a physical therapy assistant in hospitals and recently was accepted into UCSF’s nurse practitioner program, the doctors would have to pass her litmus test, or this donation was a no-go for me.

Once Mel and Lily left, the doctor seemed more in his comfort zone and covered more details about the surgical procedure. He said he didn’t anticipate any issues with my health that needed managing. He did recommend that I get my BMI (Body Mass Index) below 30%. Marilyn had already made that clear when she told me I was at 30.9% and said, “The less there is to cut through, the easier it’ll be for you and the surgeon.” That was just about the nicest way I’ve been asked to lose weight, I must say.

After the doctor left, the social worker came in. She focused on the more social/psychological/practical part of the donation. She asked questions like: “If after you donated the kidney, you were to experience kidney failure, how would that make you feel?” She was a breath of fresh air from all the medical talk and really seemed to hone in on the more important day-to-day things involved in recovering from major surgery. Melanie had a chance to come in and ask plenty of questions. By the end, I really felt the social worker had my family’s best interest at heart.

It was about 1:15PM when we ended our meeting with the staff and I was to go upstairs for the EKG and chest x-ray. I said goodbye to Mel and Lily and felt like we really had things going for us. That is, until I made my way up to the second floor.That mild headache started turning into a medium one. Then, as soon as I checked in and walked into the testing room, I started to break out into a cold sweat. The nurse asked if I was okay and I said I felt nauseated and just started getting a headache. She connected the electrodes quickly, as I began to perspire all over. I thought I was going to pass out, but the test was quick and she had me up and drinking water before you knew it.

She connected me to a couple of monitors and said “Your vitals are fine.” We concluded rather quickly that it was my lack of food that was probably to blame. I had two bananas in twenty hours, had to hydrate extra which probably lowered my electrolytes, had twelve vials of blood drawn and had taken ibuprofen on an empty stomach. As soon as I made it out of the EKG lab, I booked it to the bathroom and puked. It was puppies and rainbows an hour ago and now it felt like the sky had been parted by a hail of thunder and rain.

I didn’t know what to do because I couldn’t think straight while I was lying on the floor of the bathroom trying to prop myself up. The headache was head splitting at this point and I managed to make my way down to Marilyn’s office. The social worker happen to be walking by at that moment and could tell I wasn’t well. Marilyn was not in so she grabbed another nurse. I tried to eat some crackers, but couldn’t manage to open the wrapper.

The nurse took me back and brought me some apple juice. The same nephrologist came in to see me and also concluded it was the lack of fuel. I then asked where I could vomit and he pointed to the sink next to him. I only barely made it there, as he pulled the curtain to cover himself.

Ten minutes after lying on the bed, I went out to the lobby where I began to feel a little better. All I wanted to do was sleep and/or be out in the sun which was beaming through the windows.

The nurse didn't advise it, but said she couldn’t stop me. I went out and immediately started feeling better. The color started to come back into my face and I could actually sit and think about what to do next. I decided to text my friend Omar, who worked nearby, to come and pick me up so that I wouldn’t have to be alone for this. A different nurse called me to see if I was alright, and I said I was doing much better. I was afraid this would somehow affect my candidacy as a donor and was going to go back for the chest x-ray, but she said that it was no big deal and I could do it at another time.

I drove with Omar and spent the night at his place. We had a great evening catching up and looking at amazing photos of his trip to Cuba. I called and left a message with Marilyn at 7 the next morning and she left me one, too, saying that these things happen and that they had enough info on me to make a final decision on my candidacy the next Tuesday.

That Tuesday couldn’t come soon enough. I got a call from her while I was at my daughters' school picking them up. She told me I passed all of the exams and I qualified to be a direct donor to Niem! All that remained was to go in for the chest x-ray and a mandatory psych eval for non-blood relatives. A pre-op MRI is required to map out how they’re going to remove my kidney, but all looks good for a December surgery date.

Tears quietly streamed down my cheeks and I thank her for everything she’s done. I immediately called Niem and didn’t care that it’s the middle of his workday or that I’m surrounded by parents and kids going about their business, because after I shared the news with him, for a moment, time stood still for us and we could feel we were part of something bigger than ourselves.

There have been two times in my life I’ve been so sure about something that I decided all I could do was record its unfolding. The day after I went on my first date with Melanie, I went out and bought a journal to document our first twenty-five dates. Likewise, when I started on this kidney donation journey with Niem, I started to journal it in this blog, because when there’s no question something is meant to happen, all you can do is embrace it and be grateful you’re a part of it.

Officially Approved!

Jason is a compatible match!

It's now been a few weeks since learning this. For years, I was hoping to find a living donor, but I could not know for sure it would be possible.

So, like a person winning the lottery, I wanted my mind to fully process the good news before publicizing it more widely now. I hope that my friends and family on Facebook can forgive me for my delay in sharing, and hope they understand that I needed this time to absorb this wonderful moment.

With the utter disbelief subsiding, I can tell you that I'm feeling astoundingly lucky and happy indeed. I am beyond grateful for this fantastic generosity from Jason and the larger forces at work, whatever they are, for giving me the best chance at more years of life.

Last week, Stanford officially approved for Jason to be my living donor. We are scheduling the transplant for December 20 of this year, which will give us and our families plenty of time to prepare for the surgery. There will be more details in the weeks to come!

Thank you to everyone for their thoughts, prayers, and support. It means a lot to me and to Jason. 

This is a drawing I made to try to capture the hope I felt on the morning of February 21, when I got Jason's text about wanting to chat about some very good news.

Thank you, Jason!


February 22, 2017

Dear Jason,

As my mother so correctly said, I don't have the language to adequately express the gratitude and happiness I feel for the news that you are a compatible living donor. Thank you for this extraordinary gift.

Thank you for being such an astonishing example of people's highest capacity for caring, healing, and goodness. Not only are you the embodiment of quality in kindness, but the em-spirit-ment of it too! It's a blessing to be able to accept a part of you in me, and just an unbelievable privilege as well.

I am glad that Garcia means Tran, and Tran means Garcia!

With love and gratitude,

Niem

Learning the Good News

On Tuesday, I woke up to a text from Jason. He wanted to talk to me at 9:50 AM during his break. My eyes widened at this part of the message: "let me know when you're free to chat for a few mins:-)"

I looked up, alert, and cautiously optimistic. 

At 9:50 AM, at work, I scooted into a focus room across from my cube. Jason told me the good news, that he was a compatible living donor match.

My first instinct - Ask: "Are you sure? What kind of tests did they run?"

"They ran the crossmatching, and there were no problems!"

It was all a pretty incredible shock, and at that moment, I felt almost numb with relief and disbelief. As we talked about it some more, tears welled up in my eyes. I shared the good news with my co-workers, then called Linda, called my mom, and told my siblings.

A few days later, I am still absorbing the good news. Not until today have I felt like it's really hit me.

The next step are some meetings with the surgeons, and final minor physical tests for Jason - EKG, chest x-ray. We'd like to schedule the transplant surgery within the next few months.

I am feeling beyond lucky and grateful for my dear friend Jason.

Guest Post by Jason Garcia, Week 8

Yes, I know Week 8 doesn’t come after Week 5, but it took a few extra weeks to get those lab results from my last blood draw to determine if Niem and I match antigens to move on to one of the final tests, the Crossmatch test. It’s been a challenging waiting period because we had picked up so much momentum early on with each passing week. In between, however, Melanie and I celebrated Lily’s fifth birthday and Amelia’s seventh as well as seeing Kylie perform a song in front of the whole school. Ironically, Melanie is also playing the waiting game after interviewing for UCSF’s nurse practitioner master’s degree program.

Recently, I’ve researched and run multiple scenarios in my head on all the possibilities that being a kidney donor would bring. The information is out there with things like the 1% risk of mild bleeding as a result of the surgery, adhesion build up sensitivity, high blood pressure, protein in my urine, hernias, organ impairment and stitches coming apart. All are possible outcomes that I don’t think anyone would willingly volunteer to put themselves at risk if they had the choice.

I know the others in our close group of friends wouldn’t want to put themselves at risk either but a couple have already been ruled out as candidates for one of the many, many reasons you can be and one is in the middle of testing now. We’re just like that with each other. When I asked Niem to help me with some artwork I needed done some months back, he didn’t quote me a price. He asked what I needed, when I needed it and how it is he could best help and he did. Our group of friends wants to know the What, When and How on ways to be there for each other, not the Why.

On Tuesday, I noticed I missed a voicemail from a nurse I hadn’t talked to before in the process of transferring over to a new phone. I called her back the next morning while I was at work and she tells me we’re a good antigen match! If that wasn’t good news enough, she also says they conducted the crossmatch test which is a stronger determining factor on whether we’re actually a match or not. It’s negative! That’s a good thing in medical crossmatching lingo. It turns out my kidney can go directly into NIem because his cells didn’t reject mine under the microscope.

I was at a loss for words and the reality of what she was telling me took a second to sink in. Maybe I shouldn’t have called in the middle of my workday while I’m waiting for a client was my next immediate thought. Tears began welling up and I didn’t know what to say. “So, what’s the next step” I ask, but inside I’m also thinking they just saved me from having to have my blood drawn one last time by doing the crossmatch test at the same time as the antigen test. Yay!

She then tells me about the next step, which includes meeting with the surgeon, transplant coordinator, nurse and social worker. Also, a few more tests like an EKG, chest x-ray, a quite unique sounding test that I pee into a cup at some interval time for a whole day. Fortunately, my client walked in as she was explaining that last test to me. Only one big news a day is my general rule.

I did manage to schedule that appointment for March 8th before we ended the call. I agreed to call her in the next few days to find out more details about what’s involved for that half day of testing and any preparatory steps I need to take as is occasionally the case. I squeeze in a text to Niem that I’ll be calling him at 9:50 and go greet my client. I call him at 9:48 and relay the news. We’re both speechless, but still attempt to form sentences yet, inside, we know what the other is feeling.

What can you say? The chances of my kidney being able to go into Niem’s body was in the low single digits but to me it was signed, sealed and delivered. We agree to call each other later because it’s the middle of the workday and blessings like this should only be conversed about after work hours. I call my wife and close friends and give them the good news. Collectively, we all breath a sigh of relief knowing there are still a few hurdles to get through.

Hours after all of this, Melanie tells me the amazing news that she got into UCSF’s nurse practitioner program! Blessings all around and reasons to celebrate which for our family means ice cream parlor visits. An NP specializing in geriatric care is what she’ll be going to study. Looks like I’m building my own post-op health team from the ground up here.

The next day, I ask Niem if I can call his mom and dad which I’ve known for twenty-five years and have a high respect and love for. He texts me their number and I call them. His mom picks up and knows the news of course. We share a few tears and connect the way parents do. I learned a lot from the little things I saw her do and the big sacrifices they made for Niem and his siblings. Not many words are exchanged but our feelings are expressed well.

There are many steps and hurdles that we still have to get through to make this happen but for now NIem and I will be going through this together with our friends and family. I mean, isn’t that the way things are suppose to be?

So, That's What a Hernia Feels Like..!

A big, heartfelt, humble, and wholly insufficient Thank You to Jason for his continuing efforts to be a living donor.

As we wait on the results from the antigen testing, I'd like to update everyone on how I'm doing. 

Basically, I'm pretty good. I'm hopeful and in generally good spirits. This is an improvement on my dampened mood a couple of months ago, when I unfortunately developed a small umbilical hernia. This and other kinds of hernias are a common complication of PD, because of all the dialysis liquid that your abdomen is filled with. In my case, my PD program consisted of filling my abdomen with 1.5 L of dialysis solution several times overnight, and once in the morning to dwell in my body for 8-12 hours during the day. Essentially, I had a lot of liquid in me for 24 hours a day. With that kind of pressure against my abdominal walls, it helped to cause a bulge through the weakened muscle near the belly button. 

When it hurt, it felt like an inner soreness focused near my navel, a little like getting kicked in the balls. Anyway, it wasn't fun, and I had to pop some Tylenols. This hernia, along with my New Year's infection, were a nice two-fer of discomfort.

Thankfully, the infection eventually cleared up after taking the antibiotics. And, now that I've been sure to not lift overly-heavy things, and my doctor has stopped the daytime dwells, it's helped tremendously with reducing the number of pain episodes.

The absence of daytime dwells haven't hurt my numbers when it comes to dialysis. I am still sufficiently removing toxins from my system, but as an unexpected bonus, I don't feel as bloated in the daytime.

Overall, I'm just grateful for a less painful and pretty normal daily life.

Here are a couple recent sketchbook entries. They depict the three Js -- the cats Jerry and Jupiter, and the human John, my nurse from Satellite Wellbound.