Author: mybadkidney

Costco Visit

When I was living by myself post-divorce, I would go to Costco a lot. Instead of buying carloads of stuff, I would go almost weekly after work and get a few items each time. Stuff like frozen food, snacks, and sometimes toilet paper. I was also driving a Nissan 350Z so I couldn’t carry much anyway.

After moving in with my parents, they do most of the shopping so my Costco visits dropped to probably a few times a year. Usually I go once to get something special, like the Google mesh Wifi package, then I would have to go again to use the rebate credit. Otherwise, I would tell my parents what I wanted and they would get it.

Lately, my mom has been complaining that I don’t eat enough vegetables so I went to check out Costco’s pre-packaged salad selection. Since costco.com didn’t have fresh food available, I need to go look at the ingredient list in person. I ended up getting two types of salad plus a pre-made sandwich/salad combo.

There are two Costcos pretty close to me. We went to the larger one in The District; not sure if that’s in Irvine or Tustin. It was about 5:00 pm on a Monday and it was crowded. Not as crowded as pre-COVID days, but much more crowded than what I expected. Everyone was wearing a mask, though it was tough to keep a six-foot bubble around you. Checkout was a madhouse so we went to the self checkout line. I haven’t seen that before. I also bought some pre-cooked entrees (Beef Stroganoff) and some dessert. What I really wanted was a Costco hot dog but my nutritionist said those were high in phosphates and I didn’t want to mess up my monthly labs tomorrow.

It was hard not to “window shop” at Costco since I could justify buying so many things. I could probably spend 30 minutes just in the TV section, even though we already have 5 LCD TV’s from Costco. The trick is to have a list of items you need to buy, and have tunnel vision so you are not distracted by all the product displays and sample ladies.

Severe Neuropathy Attack

Another day, another neuropathy attack. However, this one feels like the worst one yet. I took at nap at around noon and got up at 2:30 pm. As soon as I woke up, my left foot started hurting. Specifically, the inside of my foot about third of the way down. It feels like it’s on the surface but no amount of massaging (with my hand, not a blister causing massage wand) has any effect. I also tried putting that foot in the shiatsu massager, since my right foot still has stitches, with zero effect. I also tried massaging my calf muscle since sometimes that causes a nerve response in the foot. I took two Tylenol pills right away. I also tried putting an ice pack to see if I can numb the area. Nothing is working, and the pain is so bad that I’m grunting out loud each time the pain comes. I’m grunting so much that I’m actually running out of breath and my heart seems to beating harder, if not faster.

I try all these things because I feel like I need to try something instead of just letting the pain kick my ass every 30 seconds, but nothing has ever worked. The best “cure” has been taking painkillers and trying to fall asleep so I don’t feel the pain, and hoping that the attacks will go away when I wake up. Sometimes that works, other times the pain is worse. It’s only 4:00 pm now so if nothing changes, I have another 22+ hours of pain to deal with.

Vomiting and Novasource

For a long time, I’ve been eating ok during dinnertime. That basically means no vomiting. However, tonight I threw up during dinner again. This time is was some stir fried chicken with mushrooms and snow peas. I took a small bite of the chicken and there was a strong flavor of something. Anyway, all the food I ate up to that point came back up quickly and I had to run to the bathroom so I didn’t throw up all over the floor.

Afterwards, I decided to try on of the sample Novasource protein drinks the renal nutritionist gave me. I drank the Cafe Mocha flavored one and it was pretty good. Unlike Nepro, Novasource also included a straw and a poke-through hole at the top of the carton. That naturally restricts fluid flow so you drink slower. I still had some diarrhea afterwards but it was a pretty mild case. Since I was running low on Nepro, I ordered a case of the Cafe Mocha Novasource since I don’t see my eating problems going away soon.

California Vehicle License Tax

California, the land of high taxes. This one doesn’t make sense. The governor just said he wants to replace all the cars with zero emission vehicles by 2035 or something. However, they keep jacking up vehicle taxes for electric cars. I just got my car license renewal for next year and it is $544. That’s ridiculous. If you want people to buy electric cars, there should be a tax incentive instead of a tax penalty.

Speaking of taxes, if I see the word “bond” in a proposition, it gets an automatic no vote from me. We pay enough taxes; figure it out in the current budget instead of asking for more money.

Renal Protein Shake

My renal dietician came by briefly during dialysis to ask about my weight loss. The nephrologist lowered my dry weight again to 80.5 kg, and I left dialysis at 80.1 kg. My ankles are definitely a bit thinner, even after sitting, and my ending blood pressure was in range without taking the extra NIFEdipine pill. Maybe the “new” me does only weigh 175 pounds.

I told the nutritionist that I was experiencing diarrhea about half the time after drinking a protein shake, whether it’s Nepro (renal) or other brands. She said that this happens to other patients too, and to drink it more slowly. She also mentioned a second renal protein shake brand call Novasource from Nestlé. Like Nepro, there are three flavors: Vanilla, Strawberry, and Cafe Mocha. I also got two sample shakes and a discount order form from her.

Let’s compare Novasource Strawberry and Nepro Mixed Berry:

Nutritional ItemNovasourceNepro
Serving Size8 fl oz8 fl oz
Calories475420
Total Fat24 g23 g
Saturated Fat2 g
Sodium220 mg250 mg
Potassium230 mg225 mg
Total Carbohydrates43 g38 g
Protein22 g19 g
Phosphorus200 mg170 mg
L-Carnitine63 mg63 mg
Taurine36 mg38 mg
Water168 mL172 g
Calcium200 mg250 mg
Vitamin D2.5 mcg5.0 mcg
https://www.nestlenutritionstore.com/novasource-renal.html

The two nutritional information charts had different formats and order so I chose the ones that I usually list in random order. The two products look fairly similar; both have low potassium and phosphorus compared to regular, non-renal protein shakes. I hope the Novasource shakes taste better. I’ve only really had the Mixed Berry Nepro, and have gotten to dislike the flavor somewhat. I used to drink them at room temperature but a lot of people online have suggested drinking it cold. It’s better cold, but the chalky aftertaste is still there.

The list price for Novasource on their website is $108 for a case of 27. The cheapest price I found on Amazon is ~$90 for 27 including shipping. The nutritionist gave me an order form directly from Nestlé that has each case for $64. Similarly, Nepro usually sells for $92 for a case of 24 but the discount price is $57. Question is why anyone would buy and drink these shakes if they’re not on dialysis?

YAERV

That’s Yet Another Emergency Room Visit. Sigh…

Tonight at around 8:30 pm my dad decided to turn off the AC so he asked us to open the windows. I went into the guest room and while opening the window, stepped on a cheap plastic stool, and tripped. The tripping part was fine. The stepping part was not. There was a connector between the legs to strengthen the stool and it had a sharp edges. The edge sliced into my foot, right where the fourth toe connected to my right foot. Due to my neuropathy, I didn’t feel the cut and proceeded to bleed all over the carpet upstairs. I only noticed when the blood was soaked into the carpet by my bed and my foot was sticking to the carpet. There was a lot of blood.

Anyway, I called my parents for help and for the next 2 hours, we tried to stop the bleeding to no avail. The cut was pretty deep; my dad thought he saw white (bones?) in the wound. Since it was 11:00 pm by this time, I could only call the 24/7 nurse line at our work clinic health provider. A nurse answered and I showed her my foot using video chat. She recommended that I go to the ER since there is a short window for good sutures and my cut looked like it needed to be sewn closed to stop the bleeding. Ugh. Meanwhile, my parents were trying to clean up the carpet as much as they could.

Bloodstains next to my bed where I was bleeding for 30 minutes. This is after soap and water. We need to try something else.

So at 11:30 pm, my dad drove me to the ER. I thought the wait was going to take a long time but they called me in at around 12:30 am. The ER wasn’t too busy; there were about 15 people in the waiting room. Once I got into an examination room, a nurse came by to unwrap my foot. Then a physician assistant came by and determined that I definitely need sutures. After another 20-30 minutes, he came back and took about 15 minutes to sew up my toe. It felt like between 10 to 20 stitches to close up the cut. Since I wasn’t dying, they quickly discharged me afterwards so we got home around 3:00 am. I wasn’t able to sleep afterwards and sat in bed until 4:30 am when I had to get ready for dialysis. It was like pulling an all-nighter in college, except with less soda and more blood.

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It’s now 6:30 pm and we just changed the bandage. There was caked blood and old gel from the sutures but my dad cleaned it off with some alcohol. I put some new gauze and bandages and re-wrapped my foot. Since I was so tired after dialysis, I just crashed and didn’t call the podiatrist. I will need to do so tomorrow and schedule an appointment to remove the sutures in two weeks.

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Appointment with podiatrist set for next Friday 10/16. Hopefully the cut will have closed by then and won’t keep bleeding once the sutures are removed.

Weight/Fluid Control

I went out and got a Jersey Mike’s sandwich for lunch. I usually just get the turkey sub but this time, I opted for the Club Supreme sub sandwich. It sounds more impressive than it really is. Just roast beef, turkey, and bacon.

I’m not going to talk about nutrition but rather weight. Jersey Mike’s sandwiches are pretty heavy. Not sure if it’s high water content in their deli meats or the vegetables, but for me, any fluid component is added to my weight. I also drank a can of soda (like I should not have), and my post lunch weight was 82.1 kg. That feels like a lot. I had one of those Jimmy Dean frozen breakfast sandwiches plus a small cup of decaf tea so everything together was about 1.0 kg or 2.2 pounds. Since a lot of the food is make of water, all that needs to come out tomorrow morning during dialysis through the machine. I think I left at 81.1 kg Saturday, so assuming the scales are somewhat similar, I’ll probably have ~2 kg to remove, and that’s okay for the three day of fluid removal.

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Just to reiterate how a lapse of self-control affects fluid balance. The can of soda was 355 mL and the Zojiroshi vacuum mug I used for the tea is 0.34 liters. Together that’s about 700 mL or about 1.5 pounds of fluids. Most people would just pee it out later but I can’t so assuming some of it is metabolized or lost through sweat, that adds ~0.5 kg to my fluid removal tomorrow.

Homemade Breakfast Sandwiches

So after almost buying the killer Jimmy Dean breakfast sandwiches, we did get the muffin sandwiches, which had more reasonable nutritional numbers. The muffin sandwiches came in a package of four and cost $7. That’s not too bad since it’s basically a clone of a McDonald’s Sausage McMuffin with Egg. The McDonald’s app says it costs $3.90 or $15.60 for four, which is about 2x the price of the Jimmy Dean frozen version.

I think I’ve had the McDonald’s version before and they both taste about the same. The major difference is that after microwaving the frozen sandwich, the English muffin becomes a bit rubbery and hard to chew. Going forward, we are going to just buy the sausage patties and some cheddar cheese singles. English muffins are a few dollars for a lot at Costco, and I can fry up an egg. I like eggs more scrambled anyway.

Nutritional information:

Nutritional ItemJimmy Dean% DVMcDonald’s% DV
Serving Size130 g
Calories350480
Total Fat20 g26%30 g39 %
Saturated Fat8 g40%12 g61 %
Trans Fat0 g0.5 g
Cholesterol115 mg38%275 mg91 %
Sodium760 mg33%830 mg36 %
Total Carbohydrates29 g11%30 g11 %
Dietary Fiber1 g4%2 g6 %
Total Sugars2 g3 g
Protein14 g21 g
Vitamin D6%0 %
Vitamin A0%
Vitamin C0%
Calcium10%15 %
Iron15%20 %
https://www.jimmydean.com/products/sandwiches/bacon-egg-and-cheese-biscuit-sandwiches/ and https://www.mcdonalds.com/us/en-us/product/sausage-mcmuffin-with-egg.html

McDonald’s website also lists Potassium contents, which was 2% for this sandwich. I guess the numbers are kind of similar except for the cholesterol content. Maybe it’s because McDonald’s is grilling everything live while the frozen sandwich is microwaved? Also, the % DV values are not very consistent so likely they are using different DV standards.

Now looking back at the nutritional information on Jimmy Dean’s website regarding their Bacon, Egg & Cheese Biscuit Sandwiches, the number have to be wrong. Everything seems like they are 4x what you would expect looking at the same info for the sausage muffin sandwich. Also, the nutritional information says each sandwich is 406 g or about a pound. No way that’s right since that’s huge, and the box says the the same value for four. Box also says 10 g of protein per sandwich while the website says 41 g. Website probably is showing the nutritional information for the entire box of four sandwiches. Probably need to go to the store and see what’s on the box.

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Ah, should haver read the reviews at the website. There are 128 reviews, most very positive, and a few does call them out for the errors on the nutritional information chart. Now I want to try them but it also looks like they’re hard to find nowadays.

BMI = 25

Many years ago, when I started weighing myself pretty consistently on the Fitbit Aria scale, the app asked me to put in a weight target. I arbitrarily set it at 81.2 kg. If you use 5’11” as my height, that weight would give me a BMI of 25.0. I know that the BMI is not a great measure of anything, but it’s used quite a lot. At the time, I probably weighed close to 110 kg so the goal seemed really far away. Since the surgery however, I’ve been losing a lot of weight and finally hit that goal:

Again, because of how the weight was lost (not eating and sleeping well), this may not be a good thing. Weird thing is that both the St. Joseph Cardiac Rehab program and UCLA Transplant Center places a lot of attention on the number. Anyway, I am officially “normal” according to my BMI number.

My weight got down as low as 80.6 kg on the Aria scale. That’s 178 pounds. Again, I don’t think I’ve been that “light” since high school. Now I have to figure out how to exercise and build back some muscles without gaining a lot of weight.

https://www.openfit.com/the-problem-with-bmi

Fistula Update 10/3/2020

Dialysis went well today. The fistula worked fine and didn’t give me any flow issues or pain. However, they had to go with the new insertion point again. The tech said the original arterial needle insertion point has scabbed over too many times and turned hard, so we may not be able to use that site again. I now see why people have fistulas that becomes unusable over time and have several fistula operations.

I didn’t get much sleep last night again so I played games for about an hour then slept until 9:15 am. This is the best kind of dialysis session, where I’m asleep for most of it. Since today is Saturday, there wasn’t a nephrologist doing rounds and waking up patients. Once again, I left the clinic at an all-time low weight of 81.1 kg. That’s about 179 pounds. I haven’t been under 180 pounds since high school probably.

I’m kind of stressed out about my heart stress test. The results look bad based on the LV EF number. I think part of me is already assuming that I will be disqualified from transplant surgery and the 3x/week dialysis sessions are going to be a permanent part of my life.

Heart Stress Test Results

Nobody has called me yet but the written report is online on St. Joseph’s patient portal. I read it but don’t really understand anything that was written. I had to look up a lot of words but I still don’t know what the results are. I guess it’s up to UCLA to decide whether my heart is healthy enough for a transplant. I’m hoping one of the St. Joseph cardiologists or UCLA will call me with more info.

IMPRESSIONS:

  1. Moderate LV enlargement with moderate post-stress LV systolic dysfunction (post-stress gated SPECT LV EF 37%).
  2. Medium to large sized fixed inferior and inferolateral defect consistent with infarction.

Compared to the report of the study dated 11/16/2016, the inferior and inferolateral infarct complicated by moderate LV systolic dysfunction are new.

I guess LV stands for left ventricle, and the dictionary defines infarction as obstruction of the blood supply to an organ or region of tissue, typically by a thrombus or embolus, causing local death of the tissue. I think the event is what caused me to go to the ER and having to get the bypass surgery. I did meet with a cardiologist from UCLA back in April who review my files from St. Joseph and he cleared me for transplant.

There are so many tests and decision points in this whole process. I feel like my sister or me can be rejected at any point for one of a thousand reasons. I wonder how any live donor transplants are performed? The donor and patient must be super healthy.

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Crap. From this website that explains EF (ejection fraction), under 40% indicates heart failure or cardiomyopathy. My result is 37%, which means the left ventricle is only pumping out 37% of the blood during each contraction. I hope this doesn’t have anything to do with my current fluid overload problems. Now I’m stressed out and worried that I will be ruled out for the transplant.

I’m also angry with UCLA for delaying the transplant for so long. One of my fears initially is that when UCLA was finally ready for transplant, my health had deteriorated over time so I don’t qualify for a transplant anymore; over 90% of dialysis patients cannot get a transplant. Now it looks like this worst case scenario may be coming true.

Walking: Treadmill 9/30/2020

Due to the difficulty last time I took a walk, I wanted to try again today since I seem to have less fluid retention after the last dialysis session. Instead of going outside, I just walked on the treadmill in the garage. It was about 86 degrees in the garage so that didn’t help. Anyway, I walked for about 25 minutes at 1.6 miles per hour so maybe 0.7 miles total? I did take a quick break to take a tiny sip of water but felt fine the rest of the time. I wasn’t even breathing hard at the end of 25 minutes though I did feel a bit tired so I didn’t go for 30 minutes.

Hopefully this means I’m close to getting rid of all the excess fluids and my breathing will go back to normal. Maybe I’ll ask the dialysis techs to drop another 0.5 kg tomorrow and see if I can leave at 82.0 kg.

Investment Account

A few weeks ago, I decided that since I’m working from home for the foreseeable future, I would have time during the day to watch the stock market so it was time to open my own stock brokerage account. I ended up picking Fidelity and transferred some money into the account so I can buy stock and mutual funds for myself. I also opened an account for my mom, thinking I would help her invest. Well, I was quickly overwhelmed by reading prospectuses on funds and research on public companies. At my job, my previous responsibility was being the Treasurer, which meant investing the company’s free cash. That ranged from ~$50M to over $500M. However, the company had a very conservative investment strategy so it was all bank accounts and government bonds. I have a lot less cash to invest and I can take a bit more risk.

Anyway, Chase was offering $2,000 to sign up as a Private Client. Sounds fancy, but mostly you get a dedicated banker each time you walk into the branch, and there’s also an investment guy that you can utilize. I met both guys at my local branch and they seem very knowledgable and cool so I went ahead and converted my checking/savings accounts plus opened a couple investment accounts. My tax guy also invests for me but it’s almost all in mutual funds and has a pretty conservative strategy. The Chase accounts will be a high-yield account that buys bonds for cash, and a large cap investment account buying individual stock. The account has been open for a few days and already has lots of stuff in it. Here are the top 10 holdings by value:

  • AAPL (Apple)
  • TSLA (Tesla)
  • MSFT (Microsoft)
  • AMZN (Amazon)
  • PYPL (Paypal)
  • FB (Facebook)
  • AMD (Advanced Micro Devices)
  • NVDA (Nvidia)
  • MA (Mastercard)
  • SGEN (Seattle Genetics)

The portfolio only has several shares in each stock as the investment advisor tries to mimic the market but actually hold shares. He could have bought into Large Cap or Index funds but that would mean investing in the fund issuing company and not the companies themselves. I had wanted to avoid investing in Tesla since it was so volatile but now I’m the proud owner of 41 shares of TSLA. I usually don’t like to hold individual stock since I feel like I need to watch the price movement all day. Hopefully with someone else managing it, I will be more hands-off.

Political Texts

I got a text from someone at Katie Porter’s campaign. Porter is the US Representative for CA-45. She beat out Mimi Walters in the 2018 mid-term elections. I actually didn’t know who Katie Porter was until I looked her up; turns out she’s my Congresswoman. The text said:

Hi xxxx, I’m Marlene, a volunteer with Congresswoman Katie Porter’s campaign. Katie has fought to increase tax fairness and deductions for OC families, ensure free COVID testing for all and keep OC housing within reach for everyone. Will you join me in supporting Katie?

I have several issues with this. In the two years Porter has been elected to CA-45, she’s never reached out to me as an electorate. That’s fine since there are many voters in the district, but why now? She only contacts voters right before an election? Is it because I registered as an Independent (i.e., no party affiliation)? I went to her congressional website and the tax thing mention above seems to be to abolish Trump’s SALT deduction cap. I usually vote Republican since they typically push for smaller government and lower taxes but that hasn’t worked out with Trump (not that I voted for him). I would like to see SALT abolished too but without spending cuts, Democrats would probably jack up taxes in other areas, like Biden has proposed, so I’ll likely pay even more than now. As for COVID testing, I think free testing is a positive but again, anything that the government “pays” for, ultimately ends up being paid by the 50% of us that actually pay taxes. Finally, the affordable housing for all families sounds good but probably is just support for the rent control proposition, which I opposed on principle. We should let the market decide. If the rent is too expensive compared to market, then no one will rent it. If the market is too expensive, then sorry, you need to move elsewhere. Taken to the extreme, why can’t we all have a Central Park penthouse for $100? California is a super high cost-of-living area. Instead of mandating rent control and high minimum wages, the market can sort all this out without all sorts of central economic planning.

I don’t know much about her challenger either. His name is Greg Raths and I don’t know anything about him. Before the text I received today, I probably would have automatically voted for Raths since he’s the Republican option, but now, I think I need to read up on both candidates. I guess the text did help Porter a bit.

Still wondering how the Porter campaign got my information and cell phone number though.

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I’ve always voted by mail. I have no interest to stand in line and rush through the ballot in a polling location. Now with the COVID-19 pandemic, no way am I going to stand there with hundreds of people to vote when there are much safer options. This is where Trump need to shut his hole about mail-in ballot fraud. He needs to respect the system that elected him president, and will hopefully vote him out in a few weeks. Oh I wish we had better satisfactory choices for president.

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Hmm, at first glance, both congressional candidates look fairly moderate for their party. I talked about Porter already. Greg Raths’ website seems to support repealing SALT legislation, has a link to CDC regarding mask wearing recommendations, and doesn’t come across as a Trump clone. I guess that’s a better situation then having to choose between someone like Maxine Waters and a white racist.

Interview Request

I guess I can post about this since there was no follow-up. About six weeks ago, I got a chat message on Reddit from a reporter with Pro Publica. She saw some of my posts/comments on Reddit about how long it has taken to try and get a live donor transplant. I believe she was planning on writing a story on the subjective hurdles of getting a kidney transplant. I replied agreeing that I would speak to her if she kept it anonymous since at the time, I was still waiting for UCLA Transplant Center to approve my sister as a donor. She replied that she would keep my name off the story and asked for times to contact me. I replied again with my availability, then nothing. I checked Pro Publica for her stories and she has not published anything about kidney transplants yet. Maybe the story was cancelled or delayed?

Regardless, I think we need to shed more light on this topic. The National Kidney Foundation has some depressing statistics on kidney failure. They claim that there are 2 million people on dialysis worldwide and that only represents 10% of the population that needs it. Outside of rich countries, most kidney failure patients just die. The transplant centers should be doing more transplants, not less. I’ve always felt they are trying to preserve their post-surgery scores rather than helping as many people as possible. I guess it’s hard to avoid since SRTR publishes reports like this all the time.

On the latest report, it says UCLA has a post-surgery survival rate of 97.9% for living donor kidney transplants. That’s pretty good but useless to me if they won’t do the transplant. I would still risk it if the number was as low as 80% since dialysis really sucks. My nephrologist said they were pretty risk adverse on transplant candidate selection. It’s a research hospital… shouldn’t they be taking more risks?

Anyway, I hope the Pro Publica story gets written and published, whether or not they include my experience. It seems like the health agencies could do more to inform people about living donor transplants and encourage new developments in kidney care and dialysis treatments. Here is a Nature paper on the state of dialysis and it’s pretty sad.

Abstract

The development of dialysis by early pioneers such as Willem Kolff and Belding Scribner set in motion several dramatic changes in the epidemiology, economics and ethical frameworks for the treatment of kidney failure. However, despite a rapid expansion in the provision of dialysis — particularly haemodialysis and most notably in high-income countries (HICs) — the rate of true patient-centred innovation has slowed. Current trends are particularly concerning from a global perspective: current costs are not sustainable, even for HICs, and globally, most people who develop kidney failure forego treatment, resulting in millions of deaths every year. Thus, there is an urgent need to develop new approaches and dialysis modalities that are cost-effective, accessible and offer improved patient outcomes. Nephrology researchers are increasingly engaging with patients to determine their priorities for meaningful outcomes that should be used to measure progress. The overarching message from this engagement is that while patients value longevity, reducing symptom burden and achieving maximal functional and social rehabilitation are prioritized more highly. In response, patients, payors, regulators and health-care systems are increasingly demanding improved value, which can only come about through true patient-centred innovation that supports high-quality, high-value care. Substantial efforts are now underway to support requisite transformative changes. These efforts need to be catalysed, promoted and fostered through international collaboration and harmonization.

Edema 9/30/2020

When I woke up this morning, my ankles were less swollen than before. I jumped on my scale at home and it said 82.1 kg or 181 pounds. Fitbit also calculated my BMI as 25.3. I also had some slight cramping in my left ankle so maybe I’m getting close to my current “dry” weight.

I still think there is fluid in my lungs since breathing is not as easy as before but it’s definitely better. Maybe that extra 0.5 kg of fluids they removed during dialysis yesterday helped. I did sit for about an hour and a half this morning and I can feel fluid accumulating in my ankles again. I probably still need to raise my feet whenever possible. This was never a problem previously when I still urinated about 1.5 L per day. Fluid control sucks.

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Hmm, so the scales is a bit inaccurate. I just weighed myself again and it now says 82.6 kg. I don’t believe I ate 0.5 kg of stuff for breakfast so the scale is probably off by a bit each time I use it. Still, since I’ve been using the same scale for years, the decrease in weight over time is probably right.

How Did I Get Here, Again?

I had another one of those “how did I get here” moments this morning. I was sitting in the dialysis chair, holding my arm with gauze taped over the blown arterial cannulation so it wouldn’t keep bleeding. It was about 6:00 am in the morning, my arm hurt terribly, and I was exhausted from not sleeping. “How did I get here?” Again, if you asked me 5 or 10 years ago, never in my wildest dreams nightmares did I imagine that this would be my life. I really don’t have anyone to blame but myself, but I’ve seen many doctors in the past and somehow this possible outcome was not communicated to me clearly. With a long history of diabetes and hypertension, how come no one tested my kidney function until I was 45 years old?

With the COVID-19 pandemic, I would probably be sitting at home instead of at the dialysis clinic anyway since there’s nothing to do and nowhere to go.

First Shave

This past year, I had a lot of “first” milestones: first walk, first solo drive, first shower, and now, first complete shave. This is more of a laziness issue than anything else but I haven’t shaved with a razor for over 18 months. Since I started PD back in April of 2019, I got lazy about shaving. Often I would wait over a month to shave, and invariably, the whiskers are so long that they jam up my razor and it takes forever to shave, further discouraging more shaving. Finally I went out and bought a cheap electric trimmer on Amazon for $20. That trimmed close but not as close as a razor but I just left it, so for 18 months I always had a stubble.

While taking a shower today, I decided to bring the manual razor and shaving cream into the shower. In the past, I typically shave in the shower anyway since it makes clean-up much easier and your skin is already warmed up. Anyway, now it feels weird not to have any hair on my face after getting used to it for so long.

Lexiscan®

I just got home from the Lexiscan stress test. My appointment was at 1:00 pm and it took a little over two hours. I had the same test done in 2016 after not being able to get my heart rate up over 160 bpm. That time, I did the test at the St. Joseph Outpatient Pavilion and it was also requested by UCLA Transplant Center. This time, the test was done in the cardiologist’s office.

First the tech/nurse inserted an IV port in my left arm and injected some dye or contrast for taking pictures of my heart. I had to wait 15 minutes for it to circulate and the imaging part took another 15 minutes. Next, he injected the Lexiscan drug into the IV followed by more contrast and some saline. It was weird. At first there was no reaction. Then I felt my chest tighten, breathing became more difficult, and different muscles started to ache. My heart rate went up a bit from 60 bpm to 70 bpm, while my blood pressure (too high) dropped by 30 points. At the same time, he took some 12-lead EKG readings for the cardiologist. Next, I waited for 30 minutes for the contrast to circulate again, and back to the imaging room for another set of pictures. Done.

It’s now 4:00 pm and I am still tired from the Lexiscan. Chest and back muscles are still a bit tight, and I have a headache that wasn’t there before. Even though I’m starving and need to eat something, I’m going to take a nap first and hopefully feel better afterwards. Oh, and fistula is still hurting too.

Fistula Update 9/29/2020

Ugh. The tech didn’t get the arterial needle in right again this morning. After a bit of gauze and pressure to stop the bleeding, he managed to get it to work. However, they had to stick some more gauze under the needle to support it, so the angle of entry is weird. The result is that every minute, pretty sharp pain would shoot through my arm at the arterial needle site. It’s been 30 minutes of pain and I have three hours left. At least the blood is flowing.

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Just got home. I typed the above one-handed while on the dialysis chair. The four hours went by slowly. I finally fell asleep during the session just to have the rounding nephrologist wake me up. There was nothing new except he lowered my “dry” weight to 82.5 kg. I think I finished today at 82.7 kg, but my legs are still a bit swollen. Ugh, how much excess fluid do I have?

I picked up a 4-kabob family combo from Panini Kabob Grill after dialysis since my cousin and his wife are visiting us for lunch. They went to see their daughter (I guess that would be my niece) in San Diego, and they’re driving home to the Bay Area. I talked to them for awhile but I can’t eat lunch right now. I have the Lexiscan test later this afternoon and the technician wants me to fast beforehand in case I have a reaction to the injection and vomit.

It’s about 11:45 am now so I have to leave in about 40 minutes. The arterial insertion site was hurting all session long and it’s still hurting even now. Also, when the tech pulled out the venous needle, it hurt really bad. Today was just a painful day. I wish they could have kept me on the chest catheter for a bit longer.