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.

Guest Post by Jason Garcia - Week 5

After an ultrasound revealed that I have two kidneys and that they’re in relatively good health last week, the testing to see if I’m a match to donate one to Niem seems to have gotten more specific to see if I match his physiology. As a matter of fact, the next test is known as the tissue typing/compatibility test and will give us a clearer insight into whether my particular cellular make-up matches Niem’s enough to be accepted by his body, and not reject the organ.

Before scheduling the test, I had an opportunity to attend an informational meeting with Niem and Linda, Niem’s girlfriend, on kidney donation sponsored by UCSF with a surgeon as a guest speaker. I was excited to be able to ask questions Melanie and I had been wondering about and to hear more details about the actual surgery.

It was great to be there to support Niem and try and be a well-informed donor, but these meetings are not a joyous affair. Niem didn’t look like most of the people attending because many were visibly ill or quite compromised in their health. I wondered if it was because of their need for a kidney. It felt like Niem, Linda and I were in our own little bubble of hope because we had each other.

As the surgeon spoke, he detailed much of what I already knew, but it was nice to hear how routine the surgeries were. They’ve done thousands of these with success and he showed us some great statistics on it. The thing he stressed most in his presentation is how everyone should make their best effort to find a living donor. It gives you an immediate access to a kidney without being on a waitlist, and the percentage of surgical success as well as the lifetime of the kidney are much higher with living donors than cadaver donations.

The other members of his staff included a living donor and transplant coordinator. They shared a few stories of random people who stepped forward and donated one. There was someone’s mailman who did, and a teacher who did for their student, for no other reason than because they could. Most of the questions from attendees revolved around how they could move themselves up their donor list, or go to one that had a shorter waitlist. It was heartbreaking to hear their stories.

I asked about the histocompatibility process for a donor and they explained that there were ten antigens, not six as I had previously thought, that we each possess. After I find out how many I match to Niem, if any, there’s one last test that would remain. We have to literally take a drop of blood from each of us and put them in a slide and see if his cells reject any of mine under a microscope. To think that after everything's said and done that it comes down to whether Niem’s cells and mine get along is incredible. If our friendship is any indication, I think they will.

Everyone had a chance to ask them questions after the presentation and I made sure to cover my bases on the things I was curious about. I was especially interested in speaking to the living donor coordinator. It turns out that I qualify for disability for the surgery recovery period of 4 - 6 weeks! Melanie was brilliant enough to suggest I ask. This one detail sets a lot into place for us not having to worry as much on the financial end of it, because this would cover half of it.

After the weekend’s presentation, I learn that it’s kosher to talk to my coordinator on timelines since there was a story or two on the subject. I tell Rachel that if Melanie gets into UCSF’s nurse practitioner school, I’ll need to have fully recovered from the surgery by June to take over full care of my daughters. She responds positively and says she will inform the nursing team so that they can try and quicken the testing pace once they receive the package back that they’re going to FedEx to me. I’m happy to hear the news.

After getting off the phone, I think to myself, “Did she just say she was going to FedEx me a package?” Two days later that package arrives and the box in the envelope reads “Donor Tissue Typing Kit.” Okay, this just got turned up a notch...was I going to have to draw my own blood here? As I opened the styrofoam package, six empty glass vials lay inside. Fortunately, the letter said to take it to a LabCorp near me to draw the blood. Phew...but six vials of blood is twice as many as I’ve ever had taken out of me at one time! Time for a new PR.

I decide not to make an appointment this time and just to show up to a location I haven’t been to before since walk-ins are welcome. I’m there when they open at 7:00, and I’m the fifth one in line. When they call my name, I hand over the box and the receptionist smiles at how well organized everything is. “Stanford really makes it easy for us to do the testing since they provide everything for us.” It turns out the vials have a anticoagulant to keep it intact on its Fedex trip back.

The blood draw is a breeze, but does take an extra minute to fill all of those vials. The lab handles the package and gives it to the FedEx folks and I’m done. The letter I received from Rachel said it would be 2 - 4 weeks to get the results on this one, but I’m hoping my call will shorten that time. After talking to Niem, I find out they already have his antigens. That night I have a dream of Niem and I dancing like we did when we were in high school. I hope it’s a sign of how our cells will do once they’re on that petri dish dancefloor.

Guest Post by Jason Garcia - Week 4

After a month of being in the process of looking to donate a kidney, I’d have to say the most important thing is to be patient. Everyone has been amazing thus far and things have moved as they should, but there’s nothing like that feeling of wanting to help now. Since the great relief of last week’s revelation that my glucose levels aren’t off and that I’m not pre-diabetic, I was able to visit Stanford to have my kidneys looked at more closely.

It’s actually the first time I’ve been to Stanford. Their name is on the insurance provider for this, and not a third-party clinic for my testing. If you haven’t been there before, you’re in for a treat. First off, the scheduling was easy and I got the exact time I was hoping for. This test is an ultrasound designed to confirm that I, (A) have two kidneys, and (B) they’re healthy enough to run things on their own.

I remember attending at least one ultrasound with my wife when we were pregnant with each of our daughters. It was a little odd trying to connect to the image on the screen when it’s tough to know what you’re even looking at. I recall having to force a smile, because you’re supposed to say they look cute and all, but I wasn’t feeling it, since it looked more like a Rorschach blotch than a human baby.

I’ve got to say, you know you’re somewhere special when there’s valet parking. I arrived a little early to the surprise of someone parking my car for me! I checked myself in and only waited fifteen minutes before being called in. I had to wear the standard patient garb with the open back, but I only had to loosen my pants and not go full birthday suit which I appreciated. It was funny being on this end of the ultrasound where Melanie was during our visits to the hospital.

The image specialist squirted the warm gel on my lower abdomen, and started pressing a wand that looked like a store checkout handheld scanner below my belly button. I didn’t have to fast for this test, but I did have to drink three glasses of water an hour before. It felt like she zeroed in on my bladder, because I was feeling the pressure begin to make me clench. She actually was looking for my bladder and said it looked good, and the water was designed to expand it to see inside. She then mercifully suggested I go to the bathroom, because the kidneys didn’t require a full bladder to examine.

The day before the exam, I was able to sit down and read a great comic book on chronic kidney disease with my nine year old daughter that explained the kidney’s function extremely well. Niem had given it to me and I thought it would be a good way to get her to understand what he’s going through and why I’m looking into being a donor. It was amazing and really did a great job explaining it in a way that she could understand and connect to. Medikids, which is written by doctors, is a must if you have children, and you want to find an easy way to talk to them about CKD.

Once I came back from the most relieving relieving I’ve ever had, we looked into my kidneys. I had to prop myself at an angle while laying down, so she could wave the wand at an angle, since they’re in the back of your mid-section. At first, I thought I was pregnant, because I thought I saw a face, but it turned out to be my liver. We confirmed I had two kidneys and that they looked healthy. Unlike the previous tests, the results are immediate and I can walk away satisfied knowing I passed. In total, I’m there no more than forty minutes and I walk over to the valet and I’m in my car heading over to Philz coffee to meet Niem for dinner at Coconuts Caribbean.

I update him on the great news of the health of my kidneys. I then share with him that I’ve learned from Rachel about the order of the testing that’s remaining. This is after first giving blood to find out my blood type and overall health, which revealed possible elevated glucose levels. Then giving blood twice in the Fasting Blood Glucose test which revealed they were normal and belongs in the category of the asterisk you see at the bottom in case you were wondering.
 

1.      Psychosocial phone screening

2.      Histocompatibility

3.      Donor Evaluation (meet with MD, SW and RN, and routine labs/urine including 24 hour urine collection, CXR, EKG)

4.      Psychiatry Consultation

5.      MR Abdomen

6.      Surgical Evaluation

*However, if any of the above is abnormal, further testing or evaluation may be necessary prior to proceeding with the next step.

As you can see, there are still a few steps to go. As Niem and I look at the list, we see that they’re of course designed to make sure that all of the factors that can be controlled are looked into deeply. This is not brain surgery, but it is organ surgery, so I need to feel reassured that the pace of the process is by design. Everything must be evaluated, checked in on and tested twice if need be because surgery is an involved thing.

I look forward to Rachel’s phone call next week on the next step.

Guest Post by Jason Garcia - Week 3

Well, here I am three weeks into my search for whether I can donate a kidney to Niem and things quickly turned a corner when I found out that I might be pre-diabetic last week. Nice to be finding out before it’s actual diabetes, but I certainly don’t want this to turn into a pre-diabetes blog here anytime soon.

As before, the third-party test center made it easy to schedule a convenient appointment time near me. This more official Fasting Blood Glucose test required a twelve-hour fast, so that my system would be free of any calories or sugar for the test that would determine if I’m pre-diabetic, or only have glucose levels on the higher side of normal. If I’m pre-diabetic, then the kidney donation is a no-go and if I’m not, then I just need to take some time to improve my health and I could move onto the kidney health and tissue typing stage. Neither is good news for making my kidney available to Niem now, but the former is more troubling because I know enough about diabetes to know it’s not good news.

I had my four-year-old daughter, Lily, with me for this test, so we loaded up on toys and activities for the two-hour test. The clinic was in a nice residential neighborhood and seemed out-of-place yet serene somehow. Checking in was a breeze and they got me in quickly. Lily was by my side the whole time and provided me with good support for the needle I was about to endure. It wasn’t so difficult this time and they only needed one small vial. I then had five minutes to finish a sweet, orangey drink that went down easily, albeit with some jitters from the sugar rush.

We had to wait in the lobby and not leave the clinic, so as to not spend any of that glucose. That might lead to a false reading from burning the sugar. Unlike the previous glucose test, also known as a random or casual glucose test, this one is pretty damn accurate. In two hours, they would take out another small vial of blood to see what the spike in glucose levels is like, and determine which of the two I am. It would also set a PR for the amount of needles I’ve had inserted into me in a two-hour period.

As I played Shopkins line-up with Lily, I looked at her and wondered about her own health and unforeseen medical situations that could come up like this for her or my other two girls. She might be one of the many people who lives a perfectly healthy life with only one kidney. People can go with only one and never even know it. Our overall anatomy and the conditions we come down with can often be so random that you almost want to say you luck out not to be in a situation where you’re in need of an organ or come down with some fatal illness.

Lily, herself, was in a situation when she was seven weeks old in which she came down with double pneumonia in which her life hung by a thread. The care of some amazing doctors, nurses and many small miracles came together to get her through her near two weeks in the PICU. Melanie and I truly learned the humility that random illness can bring and our own friends and family were there when we needed them most. Blessings come in many shapes and sizes and the one Niem is in need of is in the shape of a ginormous bean.

The more I read about the safety of living as a kidney donor, the more I am reassured that this is a safe option for me and my family. Minor risks are present and the actual surgery is a big deal, but I know there will be caring people that would be there for me if this ever became a reality.

Once I’m in the back office awaiting the phlebotomist, I’m not so worried about the needle and tell Lily she can wait outside if wants. She came in to support me anyways.

I get a call from Rachel on Friday, which happens to be the day of Lily’s fifth birthday and the day Melanie has her interview for UCSF’s Nurse Practitioner Master’s program. She says I’m not pre-diabetic! She also adds that this more accurate glucose test revealed that I’m within the normal healthy range and can move on to the next phase of testing!

I’m beside myself and immediately call Niem with the great news. We rejoice for a moment on being able to continue on our path and no sooner do I get off the phone with him then I get a text from Melanie telling me her interview went really well. On this day that our new president is sworn into office, it seems that some things can still go right.

Training for Peritoneal Dialysis

The last time I saw my nephrologist Dr. A., I mentioned this blog. He asked if I'd done a post about the training for PD, because for many kidney patients, that's a big unknown. I remember that initial uncertainty about the challenge involved, but having done it, I can report that it's honestly not so bad. I'm sure that for all those new to the possibility of PD, you can definitely learn how to do it!

Granted, it does take several training sessions spread out over a couple of weeks or so. I also recommend a good dose of patience to absorb all the little procedures. But, just like when you didn't know how to drive a car, got trained how to do that, and were eventually confident enough to take your driver's test and pass, you will get trained on PD and eventually get the hang of it all.

I got my training from the great nurses at Satellite Wellbound in Mountain View, and really appreciated how thoroughly they went through the steps with me. They were very supportive, and didn't push me beyond what I was ready for at each training session. Once, my nurse noticed that I was really fatigued and not able to keep my eyes open, so we ended the session early. The effects of all those toxins still swimming in my system, before I was getting regular dialysis, were taking their toll on my energy. Anyway, I appreciated her looking out for me like that.

Sketching the waiting room at Satellite Wellbound. 

As well, the training includes a binder with step-by-step instructions that you take home, so you don't have to memorize all the steps. When you're starting out, it's definitely best to refer to the binder. And, if you have any questions at all, definitely don't hesitate to contact your 24/7 on-call PD nurse for assistance.

Before I started PD, I visited Satellite Wellbound and spoke in person to a patient of theirs. After asking him some questions I had about PD, that put me more at ease with the whole thing.

Guest Post by Jason Garcia - Week 2

I’m not a big fan of needles. After moving on to the blood and urine test phase to check in on my overall health for Niem’s possible kidney donation, I knew one would be involved. I’ve learned to look the other way and not think about it, which usually works for me.

It was easy to set up my appointment online by clicking the link Rachel sent me for a convenient appointment time right near my work. The place had a health-clinic-meets-a-nice-office-space feel to it and they first asked for my insurance. I wasn’t sure how to answer since it wasn’t my own that was covering this. After the receptionist got my order number from the computer, she said, “Oh, don’t worry about it, Mr. Garcia. It looks like everything is paid for and being taken care of.” There’s something special about involving others in the process, so I told her I was doing it to see if I could be a kidney donor. She was very sweet in her response and then handed me a cup to pee in.

As I sat and waited for the phlebotomist/nurse, I thought about Niem and what he’s going through. As I’ve looked into being a donor, a lot of emotions have run through my mind ranging from joy over the possibility that this could help extend his life, and sadness over the reality of what it means. It’s gotten me more in touch with a part of life I’ve never had to face much in my forty years. The illness of a close friend.

Dialysis is deceiving because there’s not much that tells you someone’s even on it. There’s the obvious tube that comes out of their abdomen, but that’s usually under their clothes. In this last year since Niem started receiving daily home treatments, outside of questions of whether overnight trips will have a power source for his portable dialysis unit, there have been no outward signs he’s got much of anything going on.

Once they call me in for the inevitable stabbing and extraction, I hang on to the thought of why I’m doing this, which eases my nerves. I tell the phlebotomist-nurse-possessor-of-the-needle I’m not a big fan of them and that I just survived my blood being drawn at Kaiser recently. He says they suck at drawing blood there, and he’d rather do it himself than go there. I laugh and feel a little more relaxed. I look the other way as he does a little wiggly move with his finger that distracts me from the initial poke. I notice that he takes a little longer than at Kaiser, so with the added time I decide to brave it and look at the needle in my arm! My heart starts racing and I get a little warm, but I don’t pass out.

After he puts the customary gauze and tape on me, I see he’s holding three vials of blood. I ask if those are all mine. He says yes. I’m shocked because they had only taken one at Kaiser, and he didn’t take that much longer than they did, but they only took one vial! I ask if he had to attach each tube separately into the needle because I didn’t feel a thing. He nods yes. I compliment him and feel satisfied in having worked with someone with samurai needle skills.

Four days later, I receive the news from Rachel that my glucose levels came in slightly elevated and that they need to do another test to see if I’m pre-diabetic or if it’s just that I have elevated glucose levels. After the heartbreak set in of potentially not qualifying to be a donor, the fear of possibly being pre-diabetic quickly set in. I’ve had blood drawn from my own health insurance provider twice in the last year and never once did I even get an email telling me I should come in and take another test. The best they did is tell me I had glucose levels on the higher side of normal, but that they still were within normal range. Well thank goodness I’m looking to donate a kidney or else I might never look to find this out.

Rachel informs me of the next step, which is to set up a glucose stress test that would take two hours to determine if I’m pre-diabetic, or have glucose levels on the higher side of normal. If I’m pre-diabetic, I can’t be a donor because diabetes can lead to kidney failure. If it’s the latter, then I’d have to lose some weight and regulate my glucose levels to qualify to be a donor.

I call and schedule it for next week and, oh yeah, Niem’s Cigna Health Insurance is covering this, too.

I call Niem and we decide to meet for dinner in a couple days. It’s actually the first time I have face-to-face time with him since I started this process. I’m immediately reminded of why I’m so happy to be doing it. I know some people say that donating a kidney is a selfless act, but as I sit there laughing with my friend and enjoying life for what it’s meant to be enjoyed for, I can’t help but think that it’s actually a little selfish. I want to live my old days with him and talk about how we got through this hurdle and the next one that comes our way. In life, we need friends, and if it’s selfish to want to keep them around as long as possible, then so be it.

I look forward to next week’s test. Whatever the news, I will be grateful to have found out now and taken the measures to lead a healthier life. Ironically, in my efforts to help Niem, he’s already helped me more than I could have imagined..

Some Disquiet on New Year's Day

On New Year's Day last Sunday, I was experiencing more pain, redness, and reddish-yellow pus discharge from my exit site than the day before, when I had felt and saw some of the same. I complained enough about it for Linda to wisely advise me to call the after-hours dialysis nurse. They in turn said I should go to the ER immediately and get treatment. I would need to obtain a culture of the pus and get antibiotics as soon as possible.

We drove to El Camino Hospital and checked in. I sat with Linda and we went over what must have happened. A few nights ago, I'd woken up with the catheter loosened from the tape that normally anchors it to my skin. I'd been using Vaseline petroleum jelly for the dry skin around the area, and perhaps got too much onto the tape, which probably caused it to detach. Without anchoring down the line, some yanking may have occurred in my sleep. That would've caused the skin around the exit site to break just enough to get exposed to what we later learned from the culture was a staph infection.

Linda at the ER waiting room.

A doctor saw me a few hours later.  I was to get an IV drip for vancomycin antibiotic drip at the hospital. She also prescribed me a couple more antibiotics to take for the next couple of weeks, and swabbed for a culture of the pus. Finally, she drew a circle around the red area on my skin with a black Sharpie, and told me to monitor it and see if it ever went beyond that area over time.

The doctor left, and a nurse came in. He stuck a big needle in my left arm for the antibiotic drip and gave me the remote. The TV was full of crappy programming. I switched it off and started to read the new biography of Krazy Kat creator George Herriman on my iPad. Before too long, however, I started experiencing a powerfully itchy sensation on my scalp and neck. After googling for side effects of vancomycin intravenous and confirming that itching was one of them, Linda called the nurse back in. He seemed surprised that I was feeling itchy, and joked that I maybe had dandruff. I actually do, but that's being treated with a prescription shampoo, so I knew this was from the vancomycin.

The nurse called for a Benadryl IV. It hit immediately with a subtle blooming sensation in my chest and throat, like the afterglow from downing some concoction of a whiskey mixed with a delicate fairyland potion. Pulses of warmth radiated from inside and throughout my body. I forgot about how incredibly itchy I'd just been, as I started to nod off, my sweatshirt wrapped around me, and the constant loud moans of the patient in the room next to me greying out, as I floated into an antihistamine-induced sleepiness.

After finishing up the vancomycin, I was discharged. Since then, I've been seeing my dialysis nurse, John, twice a week to monitor the exit site. Luckily, it looks like the antibiotics are doing their job. The redness has shrunk in size and saturation, and there's no more pus. I think it's safe to say I've managed to dodge this bullet. I will be much more careful about the tape anchoring my catheter in the future.

My sincere thanks to the staff at El Camino Hospital for helping me get through this headache that kicked off 2017.

Nigel in Triage, getting his blood pressure taken. I love how Linda draws. It reminds me of James Marshall's George and Martha style.

Guest Post by Jason Garcia - Week 1

I'm a week into my journey of finding out if I'm a possible kidney donor candidate and so far, I'm still in the running. I figured the first thing we needed to know is if my blood type is a match to Niem’s B positive, so I called Kaiser and it turns out they don't have a record of it! Isn't this basic, important information my medical provider should have? God forbid I'm in a terrible life threatening situation where I'm in need of a blood transfusion because they're going to need to take four hours to find that out.

I went to get blood drawn and it turns out I’m O positive and a possible match! After this great news, I decide to get started with the official donor application process. Niem sends me a link to fill out a standard info and health history questionnaire which takes just twenty minutes. At the end, I check off the times I’m available to talk to a representative who’s suppose to call me.

Monday 11:00 am rolls around and I get a call from Rachel, a living donor intake coordinator with Stanford Health Care, confirming they received my information. Wow, that's the exact time I checked off on the application! These people are really on top of their stuff. She sends me a thirty minute video to watch with a husband and wife that’s going through the process of donating a kidney for his brother. I decide to ask Rachel about the chances of being a match and she tells me that most donors aren’t usually a complete match. Hmmm, I don’t know what that means but that's kind of encouraging to hear.

IgA Nephropathy is the name of the condition and the video does a great job in answering a lot of my questions. You know, like what the surgery entails, the recovery, the chances of dying and stuff like that. I hate to be so blunt, but the number one question on anyone’s mind looking to donate an organ must be what the chances of dying are, aren’t they? I’m relieved to hear that it’s as safe as standard appendix removal surgery and other possible risks are there, too, but are quite low. Phew, thank goodness!

After the video, more questions come to mind like time off of work from the 4 - 6 week recovery period after the surgery. This brings up the fact that this could be a financial burden on the welfare of my family with that much time off of work. It’s the more real side of trying to gift an organ to extend someone’s life which seems mundane, yet poses a greater risk to not making this a possibility for someone in need of a kidney. I’m happy to learn that the entire cost of everything involved is taken up by the insurance of the organ recipient. I’ve got to imagine it’s what makes this whole thing possible for donors looking to make this a reality for someone they love.

Rachel called me at the end of the week and said I passed the initial screening questionnaire! I can move on to have my blood drawn and urine sample to check in on my overall health and the health of my kidneys. I’m crossing my fingers that all those salmon dinners and arugula salads the last many years really did keep me as healthy as I'd hoped they would.

Guest Post by Jason Garcia - Week 0

Happy New Year, everyone! My friend Jason has kindly written about his experiences looking into being a possible living donor candidate. I am blessed to have him explore this for me, and wanted to share his thoughts with you.

---

Earlier this year, Niem started nightly dialysis treatments because his kidneys are failing. I've been a massage therapist for the past twenty years dedicating my life to helping those around me and the truth is I don't even know what the name of his condition is because I'm afraid. All these years he's been dealing with it I felt he'd find a way to solve it or slow it down enough that it wouldn't come to this but that never happened. Now that he's almost a year into his routine of receiving truck sized deliveries of dialysis fluid and we've all become accustomed to seeing him leave our get togethers early so he can be home for the nine plus hour blood cleansing, I've decided it's time I look into what I can do to help my friend.

I've known kidney donation is that magic bullet that can turn someone's life around because I've seen those movies that usually star Ryan Gosling or Julia Roberts. The truth is that it can be 4 - 5 years of being on a wait list to even move up the list to possibly get lucky at finding a donor that matches you. I'm not too encouraged by hearing that and movies don't usually go on that long for us to see that happy ending.

For years I've thought that matching a donor’s kidney to someone in need of one is like matching a tri-states lottery numbers but I decided to look into it anyways just in case I'm holding that golden ticket. For someone whose favorite movies usually star zombies or Bruce Campbell, I'm quite squeamish about real blood, surgeries or anything involving someone being in pain. Maybe that's why I'm in the business of helping others get out of it and as I think about the possibility of being a donor, I can't help to think about this prospect.

Niem and the other five of my core friends that I met while I was a sophomore in high school are uncles to my three daughters and they mean the world to me. I don't know what this journey of finding out if I'm a donor candidate will entail but I feel blessed to be starting. When I look back a few years from now, I want to know that I did everything I could to extend his life. It's amazing that we live in a time where this is even possible. After asking a few medical professionals I work with, I've come to find out curiously that there aren't any other organs you can look to donate like the kidney. This is looking a little more promising...

Proof

A few weeks ago, I successfully corrected the spelling of my name on my Social Security card at the SS office. The new card came in the mail, and yesterday morning, I returned to the office again to apply for Medicare.

This time, they asked for proof of my having End Stage Renal Disease.  As it turns out, I need to have my doctor fill out a 2728 form, and come back to the office. That was the first time I learned that I needed this verification. There's nothing on the Medicare.gov page about needing this form: Signing up for Medicare if you have ESRD. The lady who had helped me correct my name's spelling, whom I told that I was seeking to apply for Medicare because I have ESRD, the same lady who helped me again yesterday, hadn't mentioned this form.

I do have proof of ESRD on me all the time. In a more reactionary alternate reality, I maybe lifted my shirt to show my peritoneal dialysis catheter, the plastic tube running out of my torso, taped down, and ending in a transfer set that I disinfect and twist to allow medicinal fluids to fill my peritoneal lining and help me stay healthy. Is that proof enough? Bizarro Niem calmly would ask, eyes open wide, as the security guard escort him away. Is that proof enough?

I will get the form filled out. I will call to make an appointment next time, so I don't have to stand in line for an hour in the morning chill before the office opens so I can talk to someone that may tell me I need something else I don't know I need to get further along in this adventure.

Medicare for Multi-listing

My dialysis continues nightly. Here's the latest update on my search for a kidney transplant:

After starting the process of looking into being living donors, a couple of possible donors in my family have had to drop out, unfortunately, for different reasons.

In lieu of a living donor - it's incredibly hard to ask my friends and family to donate a kidney - I've sought to multi-list at different hospitals that perform kidney transplants from deceased donors. I'm currently listed at Stanford, which has a very long waiting list, about 8-12 years. Compare this to places like Omaha's University of Nebraska Medical Center, which has a waiting list of 1-2 years. The sooner I get a new kidney, even if it's a deceased one, the better my chances of doing better.

Dialysis, on average, keeps you healthy for 4-5 years. I've been on it for almost a year now.

But Cigna, my group health insurance through my employer, as a policy will not pay for more testing at other facilities, as I discovered after being turned down from the University of Washington's kidney program.

My nephrologist was surprised to find this out. He mentioned that they would probably save more money in the long run. The costs of additional tests and a kidney transplant would be probably less than the costs of ongoing dialysis over the years. I guess their calculus involves more short-term considerations. 

The funny thing is, since discovering that Cigna won't pay for additional testing, I've had trouble reaching my case worker at Cigna. I've left messages, and have had no luck getting my phone calls returned. Usually we speak every month. It's perplexing and annoying. But I am going forward with applying for Medicare, which will pay for multi-listing and the fees associated with running the tests at a different hospital.

However! to get Medicare, I first need to change the spelling of my name on my social security card, so that my middle name isn't first, as it was incorrectly entered into the system years ago when I first got my SS card. I need to go into a Social Security office to take care of that, or else my application for Medicare probably won't go through.

There are so many hoops to go through.

Inner Workings

The new Disney short playing ahead of Moana is called Inner Workings. What if internal organs had feelings? :-)

The story concerns an anthropomorphic brain vs. an anthropomorphic heart that reside in a sad, but hopeful, first-world office drone whom wildly dances in the shower until his brain warns him to calm the hell down.

He also has the misfortune to live near a warm and sunny beach. The story is kind of a funny bummer. Hats off to Disney on a job well-done! I wonder what my nephew and niece thought about it.

A couple of kidneys were in the short too, for a couple of gags about really needing to go pee. I would have liked to see more of the kidneys! More depictions of kidneys in popular culture are a good thing. I tried spotting them in this trailer for the short, but no dice.

Thanksgiving 2016

Thank you to my family, my friends, my girlfriend, and you, the reader.

Talking about a chronic illness is a priority for me. However, it's a tough priority in that it's a challenge to know how much to say, or how best to say it. I appreciate your understanding as I get back to Livalysizing after too much time away.

I remind myself that the power of a blog is less about the 1st step of writing, but the 2nd step of publishing.

---------------------

Had a terrific Thanksgiving. After battling a persistent hiccup that started last night, and went on all day - this hiccuping may be a CKD side-effect, like dry, itchy skin - I was glad to meet everyone at my parents' house. We were surrounded by an abundance of good food. I made a green bean casserole, Thomas contributed a lasagna, Doan got the almond cake, Amy made truffle mac and cheese, Mark roasted the turkey, Robert and Janice made macaroni salad, and my parents took care of the salmon, noodles, and fruits. There weren't enough chairs for everyone, but we were enjoying the food so much that we happily stood around eating.

After dinner, I read to my 4-year-old niece Are You My Mother? by P.D. Eastman and Harold and the Purple Crayon by Crockett Johnson. I also read with my 6-year-old nephew, as he earnestly read aloud the parts of Huey, Dewey and Louie in the 1952 classic The Golden Helmet by Carl Barks." Love the way A. pronounces "New-Found-Land" and "Duckburg!"

Offline

I've been off the blog the past few days to spend time practicing a wedding officiant speech. It's my first time officiating a wedding, so I want to memorize it, and do a great job. There is some Russian involved in the exchanging of the vows, and since I don't speak Russian, I've consulted with some native speakers to nail the pronunciation. It's been a fun challenge!

An Apple Today Gives the Donors a Way - to Register :-)

The latest software update for iPhones, iOS 10, comes with some neat features, like automatically dropping a pin on your map when your car's bluetooth is disconnected. For someone like me who sometimes forgets where he parked his car, this is a real time-saver.

The most potentially helpful thing for the wider society though, has to be the newly added feature to allow people to easily register to become organ donors. In the Health App, a simple sign up form lets you do just that. I tried it myself and it only took a few seconds.  

Through this process, I learned that when I chose to be a donor on my California Drivers License, it may not have necessarily registered me across state lines.

View fullsize

View fullsize

View fullsize

As someone who needs a new kidney, I'm glad to see Apple, and more specifically, CEO Tim Cook, take the initiative on this. Apparently, the problem of donor organ shortages hit home for Cook when Steve Jobs was ill with a rare form of pancreatic cancer, and only received a new liver after a very long wait.

With all the iPhone users out there, maybe this will help increase organ donor registrations. I'll be keeping up with the news to see how substantially it will boost the numbers.

If you're interested in donating and have the new iOS, check out the Health App on your iPhone.

For FAQ's about organ donation, check out http://www.organdonor.gov/about/facts-terms/donation-faqs.html. 

SecureWay - PD Catheter Transfer Set Holder

For all the PD patients reading this, I'd like to suggest that you try out SecureWay, a PD catheter valve holder that has made a big difference for me in terms of comfort and reducing the use of irritating tape. It's also made showering with a transfer set much easier.

I like it so much that I sincerely believe they really should just issue these to new PD patients immediately after their surgery to place the cathether. It costs $19.95 and is worth every penny.

SecureWay is basically a plastic holder that you snap the end of your transfer set onto. It's attached via a string that you loop around your neck. A simple concept, but I tell you, it really does adds a lot of convenience, and just works much better than having to tape down your catheter to your torso. I also tried a special belt, but it couldn't compare.

The inventor, Edward Alfonso, was also a PD patient himself. Nicely done, sir!

Mooncake Season

Happy Mid-Autumn Festival, everyone! It's mooncake season again. I myself prefer the taste and mouthfeel of the white snow skin mooncakes over the traditional reddish-brown crust.

As the son of Chinese-Vietnamese retired bakers, every year around this time, I would come help at the bakery on weekends.

From the kitchen, you'd hear the Bap-Bop-BAP-BAP! noise of my father and his staff repeatedly pummeling wooden mooncake molds against the tables to loosen the packed mooncake ingredients. Then, they'd gently place them onto the large baking trays. 

My mother would call out for from the front: "Một cà phê sữa đá!" We'd shovel ice into a styrofoam cup pre-filled with Vietnamese iced coffee, snap on a lid, and insert a straw. Speed-walking through the narrow corridor, past the pastries in their glass cases, or around from the other end, past the lotto machine. I would try to remember to deliver the $2.00 beverage with a cảm ơn.

I'd like to say cảm ơn, or thank you, to my parents, now retired. So much sacrifice and hard work getting us from there to here, and then to now.

Living with CKD or any chronic illness, it's incredibly helpful to receive emotional support from your folks, if you are lucky enough to have it, and I am deeply grateful for theirs.

"At the Store." Oil on Canvas, 36" x 48", 1998. 

Connecting to the Baxter Cycler

I'll go step-by-step. People who love excruciating detail will appreciate this post.

After taking a shower, cleaning the exit site of the catheter on my abdomen, drying off, and getting dressed, I start the process of getting hooked into the peritoneal dialysis (PD) machine. 

Supplies

• 1 HomeChoice Baxter PD machine
• 1 Cassette Tubing for cycler
• 3 Dialysis Solution Bags
  • 6L 1.5% Dextrose
  • 3L 1.5% Dextrose 
  • 2L 7.5% Icodextrin
• 1 Mask
• 1 15L Drain Bag
• 1 Bottle of Alcavis 50 High Level Disinfectant
• 2" x 2"  Clean Gauze
• Hand Sanitizer
• Plastic Urinal for overnight use

Procedures (Total time is about 20 minutes): 

1. Make sure my hands are clean. Since I've just taken a shower, they should be, but I'll often use hand sanitizer anyway.

2. Open the solution bags and check for "SEAL" (Strength of solution, Expiration date, Amount, and Leaks).

3. Place the 6L 1.5% Dextrose bag on the cycler machine.

4. Turn on the cycler.

5. Wait for the LCD screen to show "PRESS GO TO START"
     a. Press GO button. It'll make a loud beep sound. Sometimes you need to press the GO button twice)

6. The screen will say "LOAD THE SET"
     a. Remove the cassette tubing from its sealed bag, and close all 6 clamps on the tubes.
     b. Open the load door and place the cassette inside. Close the door.
     c. Place the blue organizer of the tubes onto the front of the closed door, fitting it on both notches.
     d. Open the drain bag and close only the large white clamp on the bag, and spike the drain line from the cassette into the bag.

7. Press the GO button. The screen will say "SELF TESTING." Wait 2-3 minutes while the machine goes through this testing of the lines. Use this time to roll up the plastic bags that held the dialysis solution bags, and put them in a box for recycling later.

8. Put on my mask and wash my hands with the hand sanitizer.

9. When the screen says "CONNECT BAGS & OPEN THE CLAMPS"
     a. Connect the tubing line with the RED clamp to the heated bag, which is the 6L bag on top of the cycler. Break the frangible on the bag. Make sure it's fully broken.
     b. Connect the line with the first WHITE clamp to the 2nd solution bag, the 3L 1.5% Dextrose. Break the frangible on this bag. Make sure it's fully broken.
     c. Connect the line with the BLUE clamp to my last bag, the 2L 7.5% Icodextrin bag. Break the frangible on this bag. Make sure it's fully broken. *
     d. Open clamps for the Solution bag lines and the patient line on organizer at the far left.

10. Press the GO button. The screen will say "PRIMING" and the machine will prime all the lines. This takes about 7 minutes, so I'll go brush my teeth, floss, put on my retainer, and trade my contact lenses for my glasses.

11. When "CONNECT PATIENT" and "CHECK PATIENT LINE" alternate appearing on the screen:
     a. Use hand sanitizer to clean my hands
     b. Take out a 2" x 2" gauze and dispense some Alcavis 50 on it.
     c. Use that gauze to scrub the still-closed minicap on the transfer set part of my PD catheter.
     d. Connect my transfer set to the patient tubing line CAREFULLY and ASEPTICALLY by removing the pull ring from the patient line, removing the minicap and then immediately connecting the transfer set to the patient line. Woohoo!! I am now connected!
     e. Press GO button. The screen will say "INITIAL DRAIN"

12. After initial drain, the treatment begins. The whole treatment for me takes about 9 hours.

Many thanks to my main nurse Suchen at Satellite Wellbound in Mountain View for writing up the guidelines which I've adapted for this post.

* I repeat and three-peat this note about checking that the frangibles are fully broken because even though, in theory, the machine should be able to detect a bag's solution not running through the tubing while the machine is working, and then sound a beeping alarm and display the problem, this was definitely not the case for me once.
     The last night of Coachella this year, I returned to my room exhausted, and neglected to fully break the frangible on the 2nd bag. The next morning, I noticed that the bag was still full and I hadn't received any of that dialysis. I spent the afternoon on the drive back to the bay area feeling quite weak and only able to do the bare minimum in terms of walking and moving around. Make sure those frangibles are broken!)

Nighty Night

As I sit and type this in bed, the HomeChoice Automated PD System whirrs and pumps away. It's not terribly loud, but it is noticeable, and some patients have trouble sleeping with it. To drown it out a little, I sometimes use a rain noise app. And to eliminate the LCD display's brightness, I go to bed wearing a sleep mask.

I use the machine every night. It gets connected to some bags of solution with dextrose and icodextrin in them, as well as my peritoneal dialysis catheter that I had surgically placed on/in me in December. The machine warms up the solution via the heated cradle and automatically goes through a Drain, Fill and Dwell Cycle every hour and 50 minutes or so, for four cycles, which add up to nine hours total.

Thanks to my rain and thunder app and the eye mask, I usually sleep through it all, only waking up to pee in a portable plastic urinal in the early morning. Every time I pee, I try to remind myself to be thankful that I still have residual kidney function left to still make urine.

There used to be some drain pain, a kind of uncomfortable cramping on the insides. It's much better these days, but I used to have to sit up and adjust positions and clench my teeth to fight it, it hurt pretty awfully.

It's late and I'm sleepy. Next time, I'll talk about the nightly preparation ritual to get connected to the machine. I also realize I need to cover more of the progression of my CKD, from Stage 3 to Stage 5. That will be another blog post. Thanks for going along with the non-chronological nature  of this.

Insurance

I am fortunate to have a possible living donor, but as a backup plan, I have also listed at Stanford Medical Center for a deceased donor's kidney. The problem is that the average wait time is currently 8-10 years, and the average number of years that one usually survives while on dialysis is 4-6 years.

It's possible to get listed at more than one facility, so I recently tried getting listed at UC Davis Medical Center. I had not heard back from them for over a month. I called and learned that my insurance through work, Cigna, is no longer contracted with UC Davis, and thus my application to get listed through them was denied.

It seems totally arbitrary that Cigna would stop working with them, but I've learned an important lesson. When it comes to medical insurance, don't take it for granted that yours covers you wherever you want. Check first!

I'm now looking into Portland's Oregon Health and Science University and Seattle's University of Washington Medical Center, both of which Cigna contracts with. They also have shorter average waiting times at 2-3 years each.