I hate this time of recovery. I’m supposed to be resting and getting well, but in reality, I’m sitting around a lot and thinking about how lame my life is and how I got here. More and more I’m regretting the decisions or inaction of my past. Looking back, I can see that I was pretty arrogant, thinking that I was smarter and better than the average person, so I deserved a better life. Ha! Now it’s all regret about how stupid I was.

When I got divorced, it was a pretty dark time. I think I was suffering from depression and having the weirdest thoughts. I know after a few years, I believed the divorced was mainly my fault, that I was a poor husband and partner. That was okay but I let my health lapse, thinking anything that happened was deserved punishment. I stopped seeing doctors and also stopped taking my diabetes and hypertension medication. I clearly remember getting a blood glucose reading of 532 on my home meter and not reacting to it. Stupid. I also thought that if I died at 50, then so be it. I’m now 51 and likely almost died several months ago but ended up with bypass surgery instead.

What if? What if my wife didn’t leave me? Would I have taken better of my health? If I wasn’t alone for the past 13 years, would I be more diligent with doctor visits? Would I be suffering from kidney failure now? Of course the answer is yes, yes, and most likely no. But would I be in a better place? Is still being married and not needing dialysis better then my life now? Sigh…

The problem is having these thoughts 24/7 is not helping my current circumstances. I know I screwed up, causing my kidney failure and recent bypass surgery. However, I can’t seem to stop thinking and regretting the past and I can sometimes feel the feeling of depression coming back again.

I just started a short 5-day devotional on YouVersion called It’s Not Supposed To Be This Way. The response question asks “How is your view of God impacted when reality doesn’t align with the way you’d like things to be?” I guess that’s the important question. I just want to be “normal” now. How does dwelling in the past affecting me? Not just with God, but with my parents, sister, friends, church people, coworkers? I don’t want to be that guy, always grumpy and depressed but it feels inevitable.

I’ve been logging my blood pressure readings in my medical notebook, mainly to have a record and also have something to blog about. However, I know that the clinic system is automatically logged the same numbers into my medical records so my nephrologist can see the readings.

Today, I noticed one of the techs coming around and taking notes. She just told me that their computer system is not logging blood pressure readings so they have to do it manually. There are 27 chairs at the clinic and each machine takes blood pressure readings every half hour plus any additional manual readings the staff triggers. That’s a lot of note taking and data entry.

Speaking of blood pressure, it’s high again for me. When I came in today, the first sitting reading was 214/108! Again, the nurse just looked at it and didn’t seem concerned. Since then, the readings have been dropping but is still really high. Weirdly, the last reading spiked up again to 194/114, triggering a systolic alarm. I’m sitting up which should have a slightly lower blood pressure than if my legs are up or if I’m fully reclined. Looks like the new drug olmesartan is not working yet, or the dosage for both drugs is too low.

This week’s sleep is not much better than last week. It looks like about four hours daily, broken up into multiple sleep sessions. I’m still always tired and the lack of sleep can’t be good for my recovery. I think I’m able to fall asleep when I lie down but wake up after only a few hours. I have a humidifier on the entire time so it’s not too dry in my bedroom. Actually I may have the heat turned on too high since I’ve woken up in a sweat several times. I’ll try having the room temperature lower and use more covers like I did before surgery.

I now think I should have bought a larger bed when I had the chance. I went from a regular twin bed to a twin XL but the old bed had a frame so I felt it kept me in bed. The new bed is just a mattress on a adjustable platform and I feel like I may fall off the bed, especially when I have the back raised. Should have gone with a full XL even if it takes up more floor space in my tiny bedroom.

I weighed in at 94.6 kg today. Since I left Thursday at 92.5 kg, and there was about 0.4 kg of PD flush UF, the gain was about 2.5 kg. That’s probably a combination of the Thursday lunch at a Chinese restaurant, and the family hot pot dinner yesterday. Even though we asked them to make the food less salty, it was still fairly salty compared to home cooking so that probably causes a bit of fluid retention. For dinner yesterday, I just ate more than normal.

2.5 kg Gain between sessions is ok. With 300 mL saline flush back at the end, my nurse set the machine UF at 2400 mL today. That’s only a rate of 690 mL per hour which is less than the 10 mL/kg/hour limit.

When I stopped peritoneal dialysis in November I thought I’d never get rid of the leftover solution. I even called my PD nurse to see if he wanted to talk some but once delivered, no medical facility wants your unused solution for liability reasons. After seven weeks of only flushing the catheter every few days, here’s what I have left:

%	Size	CAPD/CCPD	Boxes	Bags	Total
2.5	2.0 L	CAPD	0	4	4
2.5	6.0 L	CCPD	8	0	16
1.5	2.5 L	CAPD	0	4	4
1.5	3.0 L	CCPD	3	0	18
1.5	6.0 L	CCPD	5	0	10
4.25	2.5 L	CAPD	1	0	5
4.25	6.0 L	CCPD	1	0	2

I also have a bunch of drain bags, caps, and cassettes (CCPD machine tubing). If I had to flush weekly and each flush uses one bag of any type, I still have enough for another year. The CCPD bags were not designed for manual exchange but can attach to the box of drain bags I have. I am seeing the vascular surgeon who put the PD catheter in so hopefully it’s coming out soon, even if it means losing a back door to additional UF when I ate or drank too much.

CAPD = continuous ambulatory PD
CCPD =continuous cycler-assisted PD

Since there quite a bit of blood in the drained dialysate for the past two days, I wanted to see if it was still bleeding in my abdomen. I flushed the PD catheter again tonight using 2000 mL of 2.5% dextrose solution. I believe I’m down to four bags of the same solution which is a manual exchange setup that includes a drain bag. I filled almost the entire bag which was about 2090 mL and disconnected. I then let it dwell for almost two hours and drained into another bag. The drained dialysate was still a bit pinkish but much much better than previous days. That’s probably the leftover fluid from the fill/drain cycles yeterday. The net drain as about 2440 mL which gives me a total UF of ~350 mL.

It’s ~1:00 am Saturday morning. I’m still deciding whether to call it quits or flush again to see if the drained dialysate turns clear. I have lots of 1.5% solution and a very small inventory of 4.25% dextrose solution. I’ve never used a “red” bag in the six months of doing daily peritoneal dialysis.

Also, I think I’m getting the cigarette smoke phantom smell again. It just started up again this afternoon while we were playing mahjong with my sister. It’s not as intense as before but it’s definitely there, and no one else is smells anything. Dang it… it’s probably my sinuses acting up. I walked this afternoon in basically a short-sleeved shirt and shorts. Initially I was wearing a jacket but because of the sun, I got a bit sweaty and took it off. Afterwards, I didn’t feel cold by my nose was running constantly. I’m still wiping away nasal drip after 12 hours. That’s probably causing the phantosmia again. At least this time I’m pretty confident it’s not caused by a brain tumor.

“My” therapist is back from vacation so we’re meeting again this Monday. I put “my” in quotes because I’ve only seen her twice so far for a total of two hours. I think we’re still in the introduction phase so we haven’t really discussed anything yet. A lot of my friends know I’m seeing a therapist post-surgery and asked about it. I have to tell them not much has happened yet. I only get 16 sessions paid for by my work insurance; anything past that will likely be charged at her regular rate which is $135/hour.

I’m more looking forward to meeting the psychologists at the Cardiac Rehab Program. I think they have experience dealing with patients that experienced major cardiac surgery or heart attacks, and the resulting depression that follows. I am still a bit anxious, but the level of anxiety is much lower than a few weeks ago after getting some definite milestones regarding the current kidney transplant schedule. After that, I’m most worried about the persistent numbness in my feet, and the large number of dental problems. I swear I had dental clearance for transplant 18 months ago. How did things fall apart so fast?

The weather was really nice today. It was the first time I was able to go out in short sleeves and shorts. My sister’s family was over at our house so my youngest niece came with me and brought the dog. Yup, same dog that has a short attention span and can’t walk in a straight line.

We ended up walking the park route. Total distance was 1.02 miles at a pace of 26’49”. Again, some of that time was spent waiting for the dog to smell random patches of grass, and one rather large poop. The weather is still pretty nice, about 40 minutes prior to sunset but we’ve decided to eat early so I think one walk is all I’m getting today. I am still very tired at the end of the short slow mile, and I’m a bit concerned that I don’t feel like I’m improving in stamina at all.

It appears there is no residency requirement for Medicare. Once you qualify through age or ESRD, and have enough work credits, you get Part-A for free and can pay for Part-B. So once I get my Medicare card, as long as I still have ESRD, I can move to Ontario for 5 months to get OHIP, while still keep Medicare for health insurance in the US. I’m not quite there yet on Medicare though the second agent at the Social Security office said my Medicare coverage should start on 1/1/2020.

I see two ways to do this. Either move to Canada and find private insurance or pay out-of-pocket (Globe and Mail said only $60k/year or about ~$46k USD) for dialysis for as long as it takes to qualify and apply for OHIP (8-9 months), or move to somewhere near the border. For example, if I lived in Fort Erie, Ontario, I could find a dialysis center in Buffalo, New York, which is right across the river. and travel there three times a week for the 8-9 months. There are plenty of cheap houses for sale in Fort Erie:

And… dialysis centers in Buffalo, NY. Looks like I will have to deal with DaVita or Fresenius but probably doable.

Once I get the OHIP card, I can then travel all over Ontario and have insurance coverage for dialysis, as long as I maintain residency in Ontario. We were talking about getting a condo in Mississauga at one point so maybe that’s still an option?

OK, I’ll stop fantasizing about multiple government funded healthcare and concentrate on recovery and getting that kidney transplant.

After finding out about Dialysis at Sea, I’ve been thinking more about the possibility of overseas travel while still on hemodialysis. What would it take to visit my relatives in Canada? I made this trips many times in the past. A direct flight from LAX to YYZ (Toronto) will take ~5 hours while departing from John Wayne Airport (SNA) is more convenient but there is usually one layover in Dallas, Chicago, or New York. Canada has a very developed healthcare system so there should be plenty of dialysis clinics.

I found this list online of dialysis centers willing to take tourists. No idea if the list is current or accurate. If so, then there are several places in Toronto and one in Burlington. I know there is a Trillium Health dialysis center right in the middle of Mississauga but it’s not on the list. I guess if I was serious, I could call and find out. Most important question is cost. Canada has socialized medicine so everything is paid by the provincial government. In this case it is the Ontario Health Insurance Plan (OHIP). Maybe they will charge something equivalent to our low Medicare reimbursement rates.

Actually, if I move to Canada and live there at least 5 months of the year, I can get OHIP since I have Canadian citizenship. I wonder what the minimal resident qualifications are for Medicare. Maybe I can get dialysis paid for in two countries.

Since there was a lot of blood in the drained dialysate initially yesterday, I wanted to flush some solution through again tonight. This time I used 3000 mL of 1.5% dextrose solution split into two fill/drain cycles of 1500 mL. Since the 3000 mL bag of solution was designed for the automated cycler, I had to use several CAPD Disposable Disconnect Y-Sets to connect and drain the solution.

The first cycle was just a quick fill and drain, and the drained dialysate was very red again. I didn’t update yesterday’s blog post but I did flush another 2500 mL of 1.5% dextrose solution through afterwards so it was actually a total of four fill/drain cycles. Since the drained dialysate was pretty clear at the end, it means the bleeding has continued from yesterday to today. I let the second fill today dwell for about two hours and the drained dialysate was less red but still tinged with blood. Total UF was only ~100 mL.

The last time I had pink drain was when I was actively using peritoneal dialysis each night and it only lasted two days. I’ll probably flush it again tonight (1/3/2020) to see if the bleeding has stopped. Hopefully the drained dialysate won’t be bright red again.

Here are more blood pressure readings during today’s dialysis session:

Time	Systolic	Diastolic	Pulse	Notes
8:15 am	171	?	?	Sitting/legs up
8:45 am	146	86	75	Sitting up
9:15 am	135	82	80	Sitting up
9:45 am	145	87	82	Sitting up
10:15 am	149	85	73	Lying down
10:45 am	163	99	69	Sitting up
11:15 am	164	99	72	Sitting up
11:45 am	163	96	71	Sitting up
11:51 am	172	102	?	Sitting/legs up
11:54 am	144	92	73	Standing

One of the techs said my ending blood pressure was “perfect” even though I think it’s a bit high. Relative to sitting, I think it’s only up about 20 points when I stand. I’ll try measuring my blood pressure a few times tonight after I take the Olmsartan. Blood pressure is still high but better than what it was on Monday. Maybe the new medication is partially working already. It’s strange that my blood pressure increased about half-way through dialysis. Is whatever high blood pressure medication left in my bloodstream being flushed out by dialysis?

By the way, I mentioned to my dialysis nurse that I was prescribed a new blood pressure medication by my nephrologists and she said she has never heard of Olmesartan. I told her it was an ARB, similar to Losartan and Valsartan. She then mentioned that there was a huge recall recently. Great!

FDA Losartan Recall Information

Typically it’s freezing inside the dialysis clinic so I’ve been wearing a lot of layers. Today I wore a short sleeved button shirt (I taped up the PD catheter so no special t-shirt), a thin cotton jacket, and a down filled vest. Usually this has been fine temperature-wise but with about an hour remaining, suddenly I felt super hot. I ended up asking the nurse for help removing two layers of clothes so all I have is the shirt, and mostly unbuttoned due to the chest catheter. Normally I would be freezing but I feel fine now. There is 34 minutes left; I hope I don’t feel cold again and catch a cold.

Also, the arterial pressure alarm has been going off constantly for about an hour. One of the techs though my lines were twisted while another tech tried lowering the flow rate. Finally the nurse came by and swapped the connectors at the catheter, red for blue and vice versa, and it seems to work now. I guess the blue and red don’t mean anything.

Arg! My right ankle is hurting constantly now and my left leg feels terrible from the compression sock I’m wearing. Only 26 minutes left…

Blood pressure seems more reasonable today. I have not taken my morning dose of Metoprolol yet and the last three sitting blood pressure readings are 148/86, 136/82, 145/87. Maybe ten new drug is starting to work already, though I don’t feel any difference physically.

I was getting slightly concerned after the second reading. If the diastolic number kept dropping, then it may be too low when I stand up at the end, and I would have to sit and wait, or ask my dad to come pick me up. That would definitely delay my quest to have my parents letting me drive without restrictions.

I’ve heard of cruise ships with dialysis machines before but never did any research. This morning while walking into dialysis, I saw a stack of brochures from Dialysis at Sea. They provide hemodialysis services on select Royal Caribbean and Celebrity cruises using Fresenius 2008K machines. That appears to be a home dialysis machine.

The patient would visit the infirmary for their regular dialysis sessions but would be free to enjoy the rest of the cruise. Sounds like a good idea since there is a lot of time available on a typical cruise, and cruise ships are big.

I do see one issue. The brochure said Medicare does not pay for dialysis aboard cruise ships, and likely neither does private insurance. Medicare covers about 90% of US dialysis patients. To join one of these cruises, the patient will need to pay for the cruise, and pay for dialysis. I’m pretty sure Dialysis at Sea will charge more than the low Medicare reimbursement rates. My dialysis center charges me about $2000 per dialysis session whereas Medicare only pays $260. Using those prices, a 7-day cruise will cost about $6000 more for 3 days of dialysis. I guess this option is mainly for rich old people.

Also, I’ve only been on one cruise to Alaska and didn’t really enjoy it. I was bored out of my mind and there was no internet between ports. Unlike my sister, I don’t like gambling either so I didn’t spent hours of free time in the tiny casino. Looking at the schedule, there are only a few interesting cruises:

• March 20, 2020 – Great Barrier Reef, 12-nights, Sydney to Auckland
• July 18′ 2020 – Scandinavia & St. Petersburg, 14-nights, Southampton
• July 21, 2021 – Spain/Italian Med, 14-nights, Southampton
• August 28, 2020 – Norwegian Fjords, 8-nights, Southampton
• Sept 5, 2020 – Iceland/Ireland, 14-nights, Southampton
• Sept 26, 2021 – Japan, 14-night, Tokyo
• Oct 10, 2021 – Japan/Hong Kong/Vietnam, 13-nights, Tokyo to Singapore
• Nov 8, 2020 – Spain/France/Italy, 12-nights, Barcelona

A lot of these cruises will likely cost an extra $10000+ if the patient can’t get insurance reimbursement. Also, traveling to the cruise from West Coast USA will take an extra day without airline delays. Timing is risky since patients only have about 48 hours between dialysis sessions. Out of all the cruises above, Japan to Singapore is the best sounding one just for the food opportunities alone. From Celebtity’s website, the cost of the cruise, even in a suite, will be cheaper than the dialysis.

Celebrity Cruises

October 2021. I hope I’ve received a kidney transplant by then so I can travel to Asia like a normal person. If not, I’ll probably book this cruise just because there are really no other travel opportunities for hemodialysis patients, and for sure I would have gone insane if I’m still in dialysis 22 months from now.

I fell asleep after the second fill and woke up at ~4:00 am. That means second fill of ~1250 mL was in my abdomen for about 3.5 hours. The drain dialysate was less red but still pretty pink from blood in the abdomen. I can’t tell if it was still flushing the remaining blood from previously, or if there was more bleeding. I pooped again after second fill but didn’t feel like I was pushing that hard. Total UF for the two fill/drain cycles came out to 0.495 kg or ~500 mL. That’s typical for about 2500 mL of 2.5% dextrose dialysate per my experience.

I think I will flush a few more times without dwell using 1.5% dextrose. I want to see if the bleeding continued. I can fill then drain right away to minimize dialyzing and UF. My PD nurse also said flushing in cool dialysate will help close any bleeding sites. I don’t want an infection so close to getting the catheter removed.

==========

OK, I flushed through about 2500 mL of dialysate over two fill/drain cycles and the drained fluid was a much lighter pink. I think the bleeding has stopped and I’m just flushing residual blood out of my abdomen. Today is Thursday so I have another three-day “weekend” from hemodialysis so I’ll probably flush again Monday night just before Tuesday’s dialysis session and vascular surgeon appointment.

It’s about 5:30 am now. I’m going to try and get two hours of sleep before getting up for hemodialysis.

Since I still have the unused peritoneal catheter, I’m flushing it every few days. I used a manual exchange bag with 2500 mL of 2.5% dextrose solution split into two fills/drains of ~1250 mL. When I first did the initial drain, I noticed that the fluid was super red, like it was 100% blood. I took a photo of the first drain:

Usually when there is some bleeding in the abdominal cavity, some blood will tinge the solution pink. This seems a lot more reddish than previous instances of pink drain. There mush have been a lot of blood. I know a few days ago I had constipation and had to push really hard to poop, probably harder than I should have considering the surgery recovery. After draining, I filled with the remaining 1250 mL of dialysate solution. Hopefully all the blood was flushed out with the first drain and the second drain will be more normal. I also got about 200+ mL of UF on the first drain so I may get 400-500 mL of UF total, which will make hemodialysis a bit easier tomorrow.

Dang it. The pain that appeared in my right ankle while walking is now repeating pretty consistently. The pain would appear for about a second every 30 second or so. It doesn’t feel like the nerve pain I get sometimes but more of a physical muscle pain like a sprain. However, due to peripheral neuropathy, I should feel that much from that spot. Not sure what to make of this. Hopefully it will go away after a few hours like the nerve pain.

==========

The pain is more intense now and spreading into a wider area in the ankle. I think it’s not physical but neurological like the stabbing numbing pain I typically get. If so, it will probably go away after 24 hours but will also keep me up all night tonight, not that I’m getting any sleep anyway. I was just thinking that I haven’t experienced peripheral neuropathy pain since the second week after surgery, just this constant numbness. Sigh… looks like my luck ran out.

When I first started dialysis, someone mentioned that I should find a support group. It was evident that my kidney dialysis center did not sponsor a support group. They have a social worker and other people to support you but there’s not much interaction with other patients. I’m not sure what I was Googling but I found this recently. It appears to be a support group hosted by Saddleback Church in Lake Forest. Saddleback Church is one of the largest megachurches in America. There’s probably close to 25,000 people in attendance each weekend. I think it will be good to talk to other Christians with kidney disease experience. I have so many spiritual questions regarding God and kidney failure.

I sent an email to the contact confirming the next meeting’s date and time, and also whether I am allowed to be late since the meeting starts at 1:00 pm and I don’t usually get out of dialysis until 1:00 pm. Saddleback Church is about 25 minutes away from my dialysis center. I hope I can go, even for part of the meeting.

My sister-in-law’s parents are visiting from out of town. They’ve been here for about two weeks and are leaving for home tomorrow. The mom said she is carrying consecrated oil and asked to pray for me. She dabbed some oil out of a small vial on my forehead and prayed for me. I’m not sure what denomination she belongs to, or what determines whether the specific oil is consecrated or holy. The prayer sounded pretty “normal” Christian but when I Google “consecrated oil” on the Internet, most of the hits are related to the Mormon church. Hmm.

Speaking of oil, there was a revival meeting at my church several months ago. They invited a ministry called Flowing Oil who claimed that oiled flowed out of a bible, which they collect and distribute. At church, I did see a clear plastic bucket with a bible and full of oil. I have a vial of that oil but what am I supposed to do with it? Rub it on my forehead? Rub it on my back near my kidneys? Can I do it myself or someone else more spiritual has to do it? I remember one of the speakers (or his wife) came around, rubbed a bit of oil on my forehead, and nothing happened. I’ve had it for five months and not sure what to do with it.