Throughout the past seven weeks, my parents have not complained once but I think this surgery and recovery has been a huge burden on them. From visiting me daily in the hospital, then calling 911 for my hypoglycemia episode, to driving me everywhere, and just taking care of me while I’m recovering. They are both 78 years old so all this extra stress can’t be good for them. I know I’ve been sharing some of my anxiety with my mom and it hasn’t gone over well. I think I need to recover faster so I can relieve some of the pressure on them. If they would just let me drive to dialysis by myself.

Here is a list of things they are doing for me, or issues that come up because of the surgery and return to hemodialysis. I need to thank them for putting up with all this.

• Visiting me in the hospital daily for two weeks
• Sleeping with me downstairs in the other recliner for three weeks before I could climb the staircase
• Helping me get in/out of the recliner several times per day
• Fetching food, drinks, and other stuff before I could get things myself comfortably
• Stress of finding me delirious then calling 911 for the paramedics to take me to the ER
• Missing church and small group for four weeks
• Eating low sodium and low taste food for my new diet
• Driving me to dialysis and doctor’s appointments; waiting with me several times at the local Social Security Administration office
• Having to wash my back and shampoo my hair
• Walking with me for first few weeks to make sure I don’t fall down or run out of energy
• I’m sure there is a lot more…

I guess I’m lucky they are still around and fairly healthy. Not only do they actually take care of me, I need a caretaker at home before UCLA will approve a kidney transplant. Likewise, if I opt for home hemodialysis, I will need a partner to go through training and be there for emergencies.

I walked 1.17 miles at a pace of 24’49”. I was tired at the end but I don’t think I hit a “wall” this time. I just got progressively more and more tired, not suddenly like before. I also didn’t get dizzy which means blood pressure was stable. While I was still breathing hard, I checked my standing blood pressure and it was 192/89. Still stupid high but about the same as before the walk. Whichever nephrologist is doing rounds tomorrow will get lots of questions from me.

Hmm, my blood pressure has not gone down since it increased near the end of the last dialysis session. It’s been consistently in the 180’s while standing which means it’s even higher sitting. I’m not sure why though. I starting taking a higher dosage of Metoprolol yesterday and it seems to have no effect. I even sneaked in an extra half-pill; yesterday it seemed to drop my blood pressure a bit but it’s having no effect today. I’m hoping it’s not due to the bowl of pho I had for lunch yesterday. Since I need to flush my PD catheter tonight, maybe I can flush some toxins and fluid out too.

Since the sun is out, and it’s a balmy 60 degrees, I’m going out to walk a bit and see if that drops my blood pressure.

Less than three years ago, I didn’t have any scars on my chest. After 30 months of dialysis and open heart surgery, my upper body is now a huge mess. If we do put in a fistula for hemodialysis, then there will be another surgery on my (probably left) arm. Finally, if I ever get a kidney transplant, there will be another large scar on the side of the pelvis.

I labelled the non-natural items on my upper torso:

The scar from open heart surgery is surprisingly minimal. I’m not sure how it will change over time but once the redness goes away, it’s not too prominent. The two drain holes are a bit worrisome. I think they’ve closed up but I’m on my third set of scabs. The larger hole goes in pretty deep and the current scab is mostly inside the hole. The cardiac surgery nurse picked off the two scabs to promote healing when I was in her office but that doesn’t appear possible now. Almost all the holes/scars are waterproof except for the current hemodialysis chest catheter. I was able to take showers for awhile when both the old chest catheter exit site and PD catheter had healed. Now it’s back to towel wipes and shampoo in the sink until we figure what to do with the current hemodialysis chest catheter. I think I was able to prevent infections in the last chest catheter for 20 months by not showering and keeping it clean and dry at all times.

After blogging the past post on Travel and Food, I starting thinking about healing again.

It would be so easy for God to heal me. Why doesn’t God heal me? It’s such a small thing to do for an omnipotent God. Of all the sinners in the world, why me? Does God even care about me?

It’s really unproductive and probably bad for my mental health. However, I went ahead and searched Google for “miraculous healing for kidney failure” anyway and got some hits. Reading through each one, they all appears to be for acute kidney failure, where after a few days to weeks on dialysis, the patient’s kidneys start working again. Of course, that could be God’s work but often it just happens naturally. I haven’t found a case where God healed someone with long-term chronic kidney failure from diabetes. If that’s the case, then what are friends and family praying for? What does healing even look like? Does receiving a successful transplant equate to healing?

For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.
- Isaiah 55:8-9

I still try to pray every night before sleeping. I mostly pray for easing of symptoms and comfort. I pray for the health of my family and my other donor. I pray for perseverance to get through the next six months of dialysis. I pray that nothing else will go wrong, like the surprise heart surgery. I don’t know if I should keep praying for miraculous healing of my kidneys.

Since I can’t sleep well, I’ve been watching a lot of YouTube videos. Lately, I’m kind of focused on food videos, especially street food. The one channel I found is call Migrationology by Mark Wiens. I believe he is based out of Bangkok, Thailand but he travels the work with his wife and kid, eating and blogging. He’s done entire series of video food blogs in Taiwan, Hong Kong, Singapore, South Korea, and even Los Angeles.

Prior to kidney failure and dialysis, I traveled quite a bit. A lot of it was for my friend’s company in China, where I was volunteering as their CFO. I used to travel to Chengdu via Hong Kong for one week each quarter. It’s not a lot compared to people who travel all the time but one year I collected something like 56 boarding passes. I had frequent flyer status on OneWorld and American Airlines, and had to send in my passport to the State Department to add pages since I had no room for new visas. Since dialysis, I’ve done zero travel. Even though there is a three-day break each week on hemodialysis, I just didn’t have the will or strength to travel. I remember planning a trip where I would take Amtrak to Seattle, stay one night in a hotel, then fly home in time for the next dialysis session. That went nowhere. I was supposed to go to Ireland and Scotland with my sister’s family, and South Korea with an ex-coworker (she is from Korea), but you can’t expect people to abstain from travel just because you’re on dialysis.

Anyway, while watching Mark run around and eat his way through hundreds of videos, I definitely felt jealousy and regret. I believe he said he was 29 years old, has a lovely wife and son, and has traveled all over the world. I’m not sure what he does for a living; maybe he makes a lot of money video blogging on YouTube. The regret part is thinking about the past, when I was married, relatively healthy on the outside, and traveling a lot. I’m not as adventurous as a eater, but I recognize many places in Mark’s videos because I’ve been there before, in what seems like a previous life. The jealousy is looking forward. I’m wary of counting on a donor kidney transplant since it’s been a turbulent three year wait so far. What if both donors don’t work out again? Will I be able to hold on for a deceased donor transplant? Even after transplant, can I eat like Mark on the videos? A strict heart and kidney healthy diet means not eating almost everything found on YouTube food videos.

In the meantime, I still can’t sleep. I believe I only got about 4 hours last night with a three hour gap from 1:00 am to 4:00 am. I watched a lot of food videos during those three hours.

I wasn’t sure if this should be included in a dialysis blog but since I purchased the sheets with the mattress and the new bed was for my surgery recovery and insomnia, why not?

So after I purchased the mattress and the adjustable bed base, the salesperson asked if I wanted to buy a mattress cover/protector and fine Egyptian cotton bed sheets. She pulled out a sample and they were really nice bed sheets. Anyway, I agreed to both without asking the price. It turned out the mattress cover/protector was $60 and the sheets were $120. Since I bought both, I got a small 15% discount on the sheets ($18). After checking the paperwork and searching Amazon for Egyptian sheets, I thought I got ripped off since there are sheets for <$40. I finally looked closer at the paperwork and I had ordered some Degree 4 sheets. Putting that in Amazon, I got this:

Dreamfit Sheets Degree 4 Egyptian Cotton Designed for Adjustabled Beds, Made in The USA (Twin XL, Blue)

I believe this item is identical to what I ordered from the mattress store and it costs $130 on Amazon. Hmm. I guess $120 – $18 = $102 is not that bad other than it’s a really expensive set of sheets. It was supposed to ship directly from the supplier but I haven’t seen it yet. I hope to get it soon since I’m using regular Twin sheets and it want to come off the mattress each time I adjust the bed.

After sleeping, waking up, and watching an hour of YouTube videos, I can’t fall back asleep. There are many causes for the insomnia, including chest and back pains, which are somewhat alleviated by the new mattress and bed; pretty intense numbness in both feet; dry and sticky mouth, either from dehydration or the space heater in my bedroom; and just general anxiety.

I pulled the above chart from the Fitbit app. I believe it tracks your sleep based on the sensors in the Fitbit. Last week I averaged a bit under four hours per night, but not in a continuous block. The longest sleep time seems to be about 2.5 hours. Even tonight, I tried to sleep early at 10:00 pm but ended up waking up about two hours later. I had the heater turned up too high while closing the door to my bedroom. That combined with the humidifier made the room feel like a sauna. I also was using an electric blanket to warm my feet so it was way to hot in the room overall. The room has since cooled down and I put the electric blanket away, yet I could not fall asleep. I think I need to be completely exhausted so that when my head hits the pillow, I’m out immediately which prevents all the items listed above from overwhelming me. Being tired all the time yet not able to sleep really sucks.

Having paramedics show up at dialysis today and wondering about kidney transplant failure has me thinking about life expectancy on dialysis. I found this chart while Googling online:

I believe the data is from Malaysia and is at least 12 years old. However, the trends are disturbing. For people between 40-55, it looks like 11.14 years is the life expectancy on hemodialysis. Interestingly, it’s much shorter on CAPD or peritoneal dialysis using a cycler, exactly what I was doing prior to surgery. The life expectancy for CAPD and diabetes is only 3.87 years. I’m not sure how that if you look at age groups but it feels like the wait time for a kidney is longer than the expected life expectancy. Maybe it was good that CAPD wasn’t working for me since statistically I would be dead waiting for a kidney transplant.

Here is another article that has some not so encouraging data.

According to researchers, 60.3% of patients undergoing in-center dialysis in the U.S. died within 5 years, 19% died within 5 to 10 years and 20.7% lived more than 10 years.

Finally, in a previous post I was worried about having my hypothetical transplanted kidney fail in 15 years and looking at dialysis at age 66. Well, this says I’ll probably die if I go on dialysis again so problem solved.

For the study, researchers looked at 391 Medicare patients, aged 65 and older, who started dialysis, in which a machine is used to remove toxins from the blood.

Nearly 23% of the patients died within a month of starting dialysis; nearly 45% died within six months; and nearly 55% died within a year, the investigators found.

About half-way though my dialysis session today, the paramedics were called. Thankfully, they were not here for me but for another patient two chairs down. I believe he told the paramedics that he was experiencing pain (not sure where). Like the time I had to go to the ER from dialysis, the paramedics hooked up the patient to a heart monitoring unit and eventually took him to the ER.

Right after the paramedics left with the patient, my dialysis nurse came by and asked how I was doing. I was fine. She then said, “Good, I don’t want to send more than one patient to the ER” or something like that. Ha ha.

I got a letter from the Social Security Administration today telling me that I’ve been informally determined ineligible for SSI (Supplemental Security Income). Per the SSA website, SSI is designed to help aged, blind, and disabled people who have little or no income; and provides cash to meet basic needs for food, clothing, and shelter. I believe when I called the SSA to apply for Medicare, they automatically evaluated me for SSI eligibility.

One of the reasons listed under Why You Are Not Eligible is “You (or you and your spouse) have monthly income of about $3,500.00. This is too high for SSI payments in you State.” I wonder where they obtained this information since the SSA knows how much I made for the past 30+ years.

Looking at the SSA website, determining eligibility for SSI is fairly complicated. I get a feeling all federal programs for the poor or disabled are this convoluted. Maybe Andrew Yang has a point replacing welfare with a $1,000 per month check for everyone.

Based on comments from the cardiac surgery nurse practitioner, I wore a compression sock on my left leg most of the day yesterday, and for today’s dialysis session. After dialysis, I removed the compression socks and it appeared that the lumps have mostly disappeared. I then replaced the compression sock with a compression bandage for the next six hours and the lumps are almost all gone. Maybe using the compression socks/bandage is enough to push the blood/fluid out of the leg and I won’t need to get an ultrasound.

It’s been about two hours since I removed the bandage, I can see a hint of the lumps starting to reappear. Maybe if I wear the sock/use the bandage a few more days, the lumps won’t come back.

The dialysis machine measures your blood pressure every 30 minutes. Since your blood pressure typically drops during dialysis, they want to make sure it does not drop too low and cause you to black out. However, my blood pressure was going up instead. This is with taking the 25 mg of Metoprolol this morning.

Time	Systolic	Diastolic	Pulse	Notes
8:46 am	157	88	77	sitting up
9:16 am	154	85	79	sitting up
9:46 am	162	89	76	legs/feet up
10:46 am	184	105	69	legs/feet up
11:16 am	189	98	66	legs/feet up

First, if your legs/feet are raised, you would expect the blood pressure to be a bit higher. Initially, the numbers were in the 150’s. Still high, but should drop to 130’s when I stand. At some point, I put my feet up and you would expect a slight rise in blood pressure. However, I’m not sure what happened for the next two readings. I didn’t move that much but the blood pressure reading increased. Is something clogging? Why would blood pressure vary that much and go up? Maybe the 25 mg of Metoprolol I took this morning wore off. I believe the numbers kept climbing and only leveled off a bit currently since I took an extra 12.5 mg of Metoprolol.

Note to self. I need to take it easy after dialysis treatment. I walked only 0.78 miles today at a pace of 26’32”. That’s a bit slower than last time and I’m a lot more tired as well. As for the numbness in my feet, it still intense as before. Usually a short walk will increase circulation and help the neuropathy but not today. I also noticed that I was a lot thirstier too. I’m now thinking it’s the pho I ate at lunch. Even though I stayed away from the broth, it’s probably still very salty. My blood pressure is pretty high too, even after the walk so not good all around. Maybe I’ll try to take a nap to see if that helps.

For some reason, the numbness in my hands and feet started to intensify near the end of dialysis. It kind of reminded me of how I felt when I was sent to the ER from dialysis. After being disconnected from the machine, my parents and I went to eat lunch at a Vietnamese pho place. Typically pho is pretty salty. My bowl of noodles was not too bad, and I only sipped the broth sparingly. Even still, an hour after lunch I’m kind of thirsty and my mouth is dry. I’m not sure if that’s the pho, or if they took too much fluid out of me again. My dry weight is supposed to be 92.5 kg but I left the dialysis center at 92.2 kg. The absolute number doesn’t mean anything since I’m wearing clothes and shoes. I did notice twice before when my weight goes down, the numbness seems to intensify. I did tell my nephrologist this and they raised my dry weight by 0.5 kg. I would really like to know the triggers for this since it bothers me a lot, and if it’s not related to the amiodarone prescription, I’m afraid it will still be here after any potential kidney transplant.

Ugh, I just want to be free of all this at some point in the future but that’s probably not likely. The stupidity of my youth has caught up with me and is ruining my future life. I’m going to go out and walk to see if that will provide some temporary relief.

So I’ve been stressing out about this and not sure if there is a solution. I’m 51 now so even if I get a kidney transplant soon, they only last 10-15 years. Let’s say that it lasts 15 years, that would mean I need another kidney at 66 years old. Do I go back on dialysis and wait another 6-10 years? Even if an artificial kidney is available by then, will I be healthy enough for a large surgical procedure? I read that 90% of dialysis patients are not eligible for transplant. Likely I will be in that group next time.

Depressing…

My dialysis clinic texted me this morning to come in earlier. Since my parents still won’t let me drive to dialysis, I had to wake everyone but managed to get here about an hour early. This means I’ll get out around noon so I’m going to look for a place for lunch. I’ve been mostly going home right after dialysis and resting, often skipping lunch so a change will be nice.

Usually dialysis sucks because all you can do is sit for 3.5 hours. With my neuropathy and numbness in my feet, the sitting is a lot worse. Today, I need to review a three page resume and a very long tax opinion letter so hopefully I will be distracted for most of the session. It’s when I have to sit and stare into space for 3 hours that I get a little stir crazy.

Due to Friday traffic, and the fact their last delivery was out in Indio, the mattress delivery guys arrived 15 minutes past their window. They were very apologetic and set up my new bed in 10 minutes. The mattress is pretty thick and firm, and the adjustable base worked well. The only minor issue was that the mattress kept slipping off the base, even when I just sit down on the bed. I guess everything is new and shiny, and since it was only a Twin XL mattress, there’s not enough inherent weight to hold the mattress down. We managed to find some non-slip pads, stuck them between the mattress and bed base, and the mattress no longer slips.

I slept for awhile in the bed at a slight incline and it was pretty good at relieving the pressure in my chest. However, the combination of dry air and foot numbness woke me up after about two hours of sleep anyway. It’s ~3:00 am and I’m still up. I tried sleeping on my right side but felt that I needed to make the mattress flat so if I change positions during the night, I need to adjust the bed as well. I wished the bed was “smart”, i.e., Alexa compatible so I can just yell at it instead of looking for the bed remote. “Alexa, raise bed back by 15 degrees!“

It’s been two whole days since I’ve had an episode of phantom smells. I think there were several times I thought I smelled something but nothing like what I was experiencing just two days ago. I remember sitting at my sister’s house during Christmas dinner smelling smoke though no on in the house smoked.

Since I’m unsure of what triggered the initial symptoms, I haven’t been using the saline nasal rinse even though the nasal drip is worse. I’m also coughing up a lot more phlegm. This would indicate that a possible sinus infection is getting worse but a potential symptom has disappeared. Strange…

For a few weeks now, I’ve been having problems sleeping. When I was discharged from the hospital, I was sleeping on the recliner downstairs but I was sleeping great. My Fitbit thinks I’m only getting 3:40 of sleep each night this week on average. Part of the problem was my mattress. I had just purchased a nice foam mattress online and it was fine prior to surgery. Post surgery, it was way too soft to support my back and I could not find a comfortable position at all. I ended up switching back to my cheapo Ikea mattress which was a lot firmer but still not great.

We ended up at Custom Comfort mattress store last week looking for a new mattress. I purchased a mattress from them about 20 years ago and really liked it. Long story short, I bought a new adjustable Twin XL bed. My bedroom is pretty small so I had to stay with the small sized mattress. In trying out the bed, if I raise my back slightly, it seems to take pressure off my chest. With a mattress protector and some nice sheets, the bed came out to be ~$1,500. I thought that was expensive but my mom said it was pretty reasonable. The delivery is supposed to be here anytime; hopefully this will help me get a few more hours of sleep each night.

Custom Comfort Mattresses