Donor Status Update

Since my current donor is my high school friend, we talk on the phone every so often. He said that he sent in some recent tests and UCLA called him to say that the transplant committee is meeting for a final decision on him as a donor. On my side, they’re asking for labs again so it does appear there’s movement, even during the current state of emergency due to COVID-19.

Now I have to decide what to do if UCLA wants to schedule a transplant. There is huge upside since I will like be done with dialysis for 10-15 years. Not only can I live a normal life again, dialysis just barely keeps you alive. I’m sure other bodily functions will work better with a new kidney instead of relying on dialysis. The downside is the huge infection risk due to the immunosupressive drugs required to avoid organ rejection. It will make me more susceptible to infections, including COVID-19, and I have to go through another 3 months of recovery. Maybe I can get California disability again.

UCLA Cardiology

As I mentioned in my previous post, my appointment at UCLA was really quick. I saw an assistant who took my blood pressure and updated my medicine list. Then the cardiologist came in and talked to me for 5 minutes and was done. He did say he reviewed my echo-cardiogram and other notes from St. Joseph Hospital and everything seemed fine. He then said he will send a note to the transplant center so they can take me off hold. It took me longer to walk to his office from the parking lot than the actual appointment. BTW, it’s an hour drive each way and parking was $13.

I guess I’m back on the active transplant list again. I did read that live donor transplants were considered elective surgery and most hospitals are only doing deceased donor transplants. At least when the quarantine is over, we can hopefully start planning the transplant.

Tachycardia and A-fib

Ugh. My heartbeat is all messed up again. At around noon today, I took a short nap. Since then, my heart rate has gone crazy. Initially I was just looking at my Fitbit and it was showing a heart rate of ~110. I didn’t feel weak or anything like the episode before the heart bypass surgery. I also pulled out the blood pressure monitor and my Kardia EKG. Both gave me a heart rate of 110 to 120. The EKG said I had tachycardia but otherwise normal heart rhythm. I then tried to take a nap around 6:00 pm to see if my heart rate will slow down. As I was lying down, I can hear my fistula whooshing. The rhythm was super weird so I got out the EKG again. I measured several times and it either said possible a-fib or unknown. The rhythm is very irregular. I would hear three or four fast beats, then my heart would skip a beat and continue. Something it slowed down to 70 bpm, other times it sped up to 120+.

Last time this happened, my heart rate was up at 150 bpm. I couldn’t even stand up and ended up sitting/lying down on the carpet in front of my dialysis cycler. This time, I feel okay other then then weird heartbeat. I just walked upstairs from the dining room and feel fine. I’m not sure what to do at this point. I guess I can ask the nurses at dialysis tomorrow.

I have to see a cardiologist at UCLA Wednesday morning. I’m pretty sure if this continues, I’m not going to be able to clear the hold on my transplant. Each time there’s a milestone for my transplant process, something always comes up to block or delay the schedule. Sigh…

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I was taking amiodarone for three weeks after heart surgery. While I was in the hospital, they had to give me amiodarone through an IV because my heart beat sped up again. I stopped taking the medication about three weeks after discharge but it has a very long half-life. Maybe the after-effects of the drug was keeping my heart in check, and the drug has finally worn off. Amiodarone is very toxic and has tons of side effects. I hope I don’t have to go back on the medication again.

Walking 3/30/2020

Instead of going outside, I decided to walk a bit on the treadmill. I think I’m afraid of a repeat of Saturday where I almost ran out of steam on a very short walk. My dad was worried that I would get so tired that I couldn’t walk home.

To take it easy, I set the treadmill at 1.5 mph which is a pace of 40’00”. That’s pretty slow but I didn’t want to fall off the treadmill in case I got too tired. I ended up walking 0.61 miles so almost double Saturday’s short walk. I was still a little tired after the walk but definitely much better than Saturday.

It’s about 7:30 pm and I need to eat some dinner. Unfortunately, my stomach is starting to feel queasy again. I hope I don’t throw up again. I ate half a chicken kabob form Panini Grill and felt okay. If I can get dinner down, maybe I’ll walk a bit more on the treadmill later tonight. Need to make sure I’m physically okay in case UCLA wants to test something at the next transplant appointment.

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No luck about throwing up. My stomach felt funny when I went down for dinner so I came back up to my bedroom and took a nap from 8:30 pm to 11:00 pm. At 11:00 pm, I reheated some of the chicken kabob and my mom gave me some chicken soup. After eating about half the chicken kabob + rice, I drank some soup and immediately threw everything up. Judging by the amount of liquids, it looked like I wasn’t digesting anything for awhile. Now I have an empty stomach again.

On the plus side, I felt a little better lying down. Breathing was a bit easier and so has the coughing. Maybe it was just a cold.

UCLA Transplant Center Appointment

I got a call from the assistant transplant coordinator to schedule an appointment with their cardiologist. She asked me on the phone whether I was okay going to UCLA or if I wanted to wait until later. I’m traveling to my dialysis clinic full of people 3x a week so a visit to UCLA won’t be too scary. I’m surprised at the call though since everything is shut down due to COVID-19. Are they still proceeding with kidney transplants? I haven’t finished my cardiac rehab program; maybe they saw my medical records and determined it was good enough? Anyway, the appointment is in about two weeks.

Transplant Status 3/25/2020

As a courtesy, I email my transplant coordinator at UCLA to let her know that my cardiac rehab is on hold because St. Joseph Hospital closed all non-essential services. UCLA has indicated they want me to finish the program before taking me off hold. However, in the email reply, the coordinator said she received clinical notes from my 3/18 and will coordinate a visit with a UCLA cardiologist. Hmm… does that mean they are good with me completing only 14 out of 24 rehab sessions?

My primary doctor said this is not the time to get a transplant. She’s not worried about the actual surgery but more concerned with all the immunoupressive drugs post-surgery. I would be more susceptible to all sorts of bacterial and viral infections, including SARS-COV-2. Great timing!

Uncertainty Anxiety

Throughout the recovery period after heart surgery, I was struggling with anxiety and even panic attacks. The worst case was when I had to get out of the house, even though it was 11:00 pm at night, raining, and I could not even walk that far. It was an overwhelming sense of impending doom.

Since then, there have been periods of high and low. I think as each new issue arises, I have to do research to find out more info, and knowing more relieves my anxiety. This happened when the UCLA transplant coordinator called me back and left a long message about status, and also when I finally started cardiac rehab, which was required by UCLA. I don’t do well when there are too many unknowns. I start thinking about all the worst cases and start having dreams/nightmares about it.

Right now, I have several unresolved items:

Medical insurance: Still have not received a call back from my work insurance. I sent them very clear written evidence that they have the wrong information but they’re still rejecting past claims. I’m pretty sure all the claims will be resolved but not looking forward to the amount of extra unnecessary phone calls required.
Worse health post surgery: It’s hard to compare without objective data but my peripheral neuropathy definitely feels a lot worse than before. I don’t think the numbness and tingling was bothering me 24 hours a day before surgery. Also the loss of remaining kidney function is stressing me out. I have to really watch my fluid intake.
Insomnia: It’s been a week of no sleep. Sometimes I finally fall asleep around 6:00 am but always need afternoon naps to make up sleep time. I know it’s bad for my recovery but nothing is helping.
Worsening chest pain: I thought I was getting better but lately, the chest pains from the surgery appears to be getting worse. From the growing keloid on the scar to pain and difficulty breathing when lying down, I seem to be losing ground on recovery.
Employment: Still haven’t caught up at work. I get email daily about issues that I do not know how to solve. I’m not sure if it’s okay yet. There is a lot of systems and coding skills required and I’m probably can do only 50% of the task. I have staff that can do everything but it’s a new experience managing stuff I don’t completely understand.

Finally, this COVID-19 pandemic has made things much worse. All non-essential medical services are now on hold so hospitals can deal with infected patients. This cardiac rehab program, and therefore my transplant, is on indefinite hold. Even after everything resumes, I have to weigh the risk of taking immunosupressive drugs during a global pandemic. I was hoping for a kidney transplant and an end to dialysis this summer but now I’m back to not knowing. Even now, I’m worried constantly about getting the virus and infecting my parents at home. Since they’re both 78 years old, there is a non-zero chance that if one of us gets COVID-19, it will kill all three of us.

Transplant Journey

For a long time, I’ve had this nagging feeling in the back of my mind that maybe I’ll never get a transplant and be stuck on permanent dialysis. I look at other people’s transplant experience and it seems so easy. Even at the Kidney Disease Support Group, the leader found out he had kidney failure, sent email out to church group, got 11 offers for donation, and even though he was 74 years old, he received a transplant pretty quickly. Likewise, several other people in the group said they were able to get a transplant shortly after going on dialysis and everything worked out fine.

Then I look back at my journey and it seems like I’m cursed or something. I wrote a long post early on about the last few years of kidney failure. Here’s a summary of transplant expectations that never came to be:

I was under monthly care of a nephrologist for three years prior do dialysis yet despite all the appointments, tests, and medication, my kidney function kept dropping from eGFR of 50 down to <10.
Signed up with transplant center at St. Joseph Hospital. Everything was going well until sister was mysteriously rejected by the social worker for non-medical reasons. She believe my sister didn’t really want to donate so she rejected her as a donor.
We then transferred our transplant wait list time to UCLA with help from a doctor friend. At UCLA, things looked great until the CT scan found a shadow in my sister’s kidney. Not willing to risk cancer, UCLA told us to wait one year. I had to start hemodialysis dialysis while we waited.
Meanwhile, my high school friend offered to donate. He turned out to be a blood type and 3/6 antigen match. UCLA rejects him due to slightly elevated blood pressure. He then spends the next few years improving his health and eating habits to lose weight and lower his blood pressure. Waiting continues…
Sister goes back to UCLA after 12 months with new scans showing no sign of cancer. Instead, UCLA asks for a kidney biopsy. During the biopsy procedure, they missed getting a tissue sample. When we asked for a second biopsy, they said no and asked us to wait another 24 months.
After about 20 months of hemodialysis, the dialysis center and nephrologist really wants me to get a fistula. Instead, I opt for peritoneal dialysis. After surgery and six months of dialysis at home, we determine PD to be a failure and return to hemodialysis. During that time, I was not getting enough dialysis and end up losing my remaining kidney function.
After persisting for several years, my friend manages to get UCLA’s approval as donor so everyone goes back for more interviews and tests. As we were scheduling the last set of tests, I go to the ER and end up with a quadruple bypass surgery, which puts my transplant on hold.
After surgery, my friend still wants to donate so UCLA said they would clear me after I complete the cardiac rehab program. I start program in mid-January and is delayed by fistula surgery. Right now, I’m only 14/24 sessions complete.
When it looks like I’m making good progress and working towards a transplant within months, coronavirus pandemic hits and everything shuts down in the US. I need to call the rehab center to see if they’re still open but with the directive to hospital to focus on respiratory emergencies, I don’t know if UCLA is even working on kidney transplants at this time. Also it doesn’t seem like the right time to start taking immunosupressive drugs required post-transplant surgery.

Along this journey, I kept feeling like a live donor transplant was always imminent. However, each time I take a step forward, some obstacle would appear and block the transplant. I was always worried about either my donor’s health or my health deteriorating before the transplant happened but who would have imagined a global pandemic halting the process? I feel like I have zero control over my future and will be stuck on dialysis the rest of my short miserable life.

Peripheral Neuropathy 2/27/2020 (updated)

While washing up this morning, I was thinking that my neuropathy wasn’t too bad. It’s gotten a lot worse during dialysis, especially the left foot. It’s really been bothering me all morning and there is still one hour left on the dialysis machine. I also have a long (and probably painful) dentist appointment right after dialysis so I don’t know how I’m going to sit still for two more hours after four hours of dialysis.

I really think the acupuncture experiment is a fairure. I do believe the feeling in my right foot has improved a tiny bit, but the apparent increase in numbness intensity is making sitting and sleeping more difficult. My worst fear is that there will be no improvement in the peripheral neuropathy after the kidney transplant surgery any my quality of life will still be terrible.

That and knowing the transplanted kidney will fail in 10-15 years is pretty depressing.

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The dentist appointment ended up lasting 3.5 hours so all together, I spent almost eight hours on my ass all day. The pain wasn’t too bad during the dentist appointment and I took a codeine pill when I got home so everything is okay so far. The neuropathy hasn’t let up though. Both my feet are pretty numb right now and difficult to ignore. I managed to sleep for an hour while on the codeine pill. Not sure how I’m going to fall asleep tonight.

Walking 2/15/2020

It’s been a long time since I went out to walk. For awhile it was because I was at cardiac rehab. Then I had the outpatient surgery and needed the hole in my stomach to heal. I felt okay today after dialysis so I grabbed my dad and we did a small loop around the park. The park was pretty crowded since the weather was nice and it’s a Saturday. We walked 0.93 miles at a pace of 29’17”. I think my dad thought I was getting winded so he kept telling me to slow down. I also need to get a bit of exercise in while I can since I’m restarting cardiac rehab this coming Monday. UCLA Transplant Center still expects me to finish mid-March so they can clear me for kidney transplant in April. My friend/donor is currently grounded from traveling to China due to the coronavirus so we want to complete the transplant and recovery before he needs to travel again.

Kidney Disease Support Group 2/8/2020

I went to the Kidney Disease Support Group at Saddleback Church today after dialysis. Since I didn’t switch shifts, I left the dialysis clinic at 1:10 pm and made it to the group at ~1:35 pm. The meeting started at 1:00 pm but I emailed the organizer so they know I will be late.

It was a full house again, with probably 35 people in attendance. I missed most of the introductions but there seemed to be several newbies who have no idea about ESRD, dialysis, and transplant. The organizer asked how I was doing so I gave a quick update about the PD catheter removal and fistula surgery to the group. Interestingly, in the group there was a donor who came with her recipient, and someone considering to donate a kidney to his mother. There was also another person who is on her fourth transplanted kidney in ~20 years. How is that possible when my wait time is 6-10 years?

Another gentleman also had fistula surgery last week but he had a new type of graft put in. He said his veins weren’t suitable for a regular fistula so they had to insert a graft. However, he was able to use the graft right away. I guess they can stick the dialysis needles directly into the graft, without waiting for the surrounding blood vessels to heal.

It was also interesting to see the large number of local patients that were listed for transplant at the Mayo Clinic in Phoenix, AZ. They even know which temporary housing to stay at while testing or recovering from transplant. I’ve considered this option but maybe I’ll give it more thought if both my living donors get rejected again.