Stretcher Girl Walking

I haven’t seen her for a few days but today, she walked into the dialysis center with help. I saw the same leg braces she was wearing when she walked out last time. Hopefully this means she’s on the road to recovery.

Why am I writing so many posts about someone whose name I don’t even know? I guess I’m afraid that whatever happens to the other dialysis patients will eventually happen to me if I don’t get a kidney transplant. It’s easy to ignore on a day-to-day basis but the ugly mortality numbers are always there in my mind. It feels like I’m walking in a minefield blindfolded, not sure when the next explosion will happen. I’m finding out about all these complications from dialysis that my nephrologist never told me about. I doubt it would have made any difference on medical decisions though. I had thought dialysis meant a “normal” life… ha! Dialysis just barely keeps you alive, if alive means exhausted all the time and susceptible to a bunch of new health issues.

Walking Outside 9/5/2020

I’ve been fighting the onset of peripheral neuropathy pain the entire day today. At breakfast, the bottom left of my left foot started hurting, and it continued when I got to dialysis. I popped two Tylenol pills and it seems to reduce the pain frequency somewhat. After dialysis, the pain has mostly subsided. Tonight, while I was sitting on my bed after dinner, the top of the middle toe on the left foot started hurting really badly. I took another two Tylenol pills but this time, they don’t seem to make any difference. Since it was about 9:00 pm and I haven’t walked outdoors in awhile, I decided to walk around the smallest block by my house. It was only 0.32 miles and I averaged a pace of 40’15”. I was doing pretty good for a bit, until I took a drink of water, choked, then had a coughing fit. That put additional pressure on my chest and I quickly became breathless. I had to sit on the curb for a few minutes which didn’t help the pace time. While I was walking, the pain stayed away, but as soon as I walked into my garage and sat down, the nerve pain came roaring back. I don’t know what to do other than wait it out and suffer.

It was also super hot outside. Even at 9:00 pm, if’s still 90 degrees outside. That probably didn’t help my low stamina. While walking, I noticed a lot of pressure on my chest, right above where the heart was located. I also noticed there was a lot more pain and pressures as well when I cough. Not as bad as November/December last year, but definitely noticeable. Hopefully the CT scan will reveal something that is easily fixed and doesn’t require more bone cutting surgery.

Hospital Claim For Cardiac Ablation

Wow, medical costs in the US is both ridiculously high, and super confusing. I just got the statement from my work insurance. The hospital charged $98k for the procedure, and that is not including charges from non-hospital staff, like the cardiologist that did the procedure. However, the Medicare cost is only $24k, and my work insurance only paid $1,500. That seems low if Medicare only pays for 80%. Maybe Part A pays 100% for hospital services and Part B pays 80% for other stuff. So far, I’ve had two insurance plans since April and have not received any third party billing so maybe everything is getting taken care of somehow.

Medical costs are tough. Did my procedure help? Of course it did. My heart rate has been pretty stable for the past two months, except it’s now settling at about 70 bpm. The cardiologist thought it was too slow at high 50’s anyway so this is probably better. It’s just weird that 10 months after surgery, things are still not settled yet. I assume that if I did not have insurance, then my cost would be the ~$100k. Would I pay that? Probably, if the alternative is to have fast heart beat and a-fib all the time. Would I pay $200k? $300k? $1 million? I don’t know. I guess you pay what you can afford to stop the pain and discomfort. Again, I don’t know how medical care reform is going to work in the US when the costa are so high, yet very opaque. I’ll bet the hospital never gets paid $100k for an ablation but yet it’s probably on every claim they send out. Why? Also, with every new doctor expecting to get paid a lot of money, what happens if everyone pays Medicare rates and 90% of the profit in the system disappears?

Church Small Group 9/3/2020

Tonight is the first official cell group meeting this season for my church. They’re having an event at church with dinner but I decided not to go. It’s outdoors but probably several hundred people are there.

My group is sitting around one of the tables and our group leader brought a computer and external speaker. I’m joining the meeting right now over Zoom. We typically go around and share our week with the group. Even though the group is officially off during the summer, we met weekly anyway so this doesn’t seem too different.

Again, this group has been my main spiritual support group during this whole medical ordeal. The church is too big to care for single members so it’s up to the group to take care of its members. I’ve been in the same group with about 3-4 of them for the past 5 years so we know each other pretty well.

Fistula Update 9/3/2020

Since the chest catheter was removed on Tuesday, this was the first dialysis session where all I had for access was the fistula. I told the tech that there’s no backup today. In the past, if something went wrong with the fistula, we could always move one or both dialysis lines to the catheter. Not so today. Anyway, the needles went in fine, and everything worked. There wasn’t even any bleeding today from the arterial needle, but there was the occasional mystery pain in the arm. It wasn’t too bad.

Since the nephrologist lowered my dry weight on Tuesday, we thought we would try to get ahead of it, or “challenge” me. I finished the session at 85.5 kg, another low weight mark. Yet my ankles are still swollen so maybe there is a few extra kg of fluid to remove.

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It’s now about 6:30 pm. I left this unpublished for several hours while I fell asleep. I’m still very tired but the nap went well. Breathing was a bit easier so I was able to sleep for a few hours without waking up every 30 minutes. I removed the post-dialysis bandages and only one needle prick point was bleeding. I also changed the bandage for the catheter exit site. There was still a tiny bit of blood so the hold should seal in a few more days.

Updated SRTR Reports

SRTR has new reports out on all the transplant centers. It appears that they update their data every six months. Here is the page on UCLA’s kidney transplant program. I blogged about this way back in mid-January. The updated reports have six months of additional data.

I was mainly focused on looking at wait times for patients with blood type B, and comparing that to other centers across the country. Six months ago, it seemed California had very long wait periods, and it was worse than average for blood type B patients. Well, nothing has changed in six months. If anything, the statistics got a bit worse. In the prior report, it said about 20.2% of blood type B patients received a transplant after 3-years. Now the number is 19.5%. It’s slightly worse but I don’t know if it’s statistically significant. In comparison, the national number for all patients is 26.6%, up from 25.4% six months ago. So, the entire country got slightly better, while blood type B patients at UCLA got slightly worse.

The 63-page report can be found at the SRTR website, as well as prior reports.

UCLA After Visit Summary

On the video call last Friday, my new transplant coordinator said that she would put documents on the myChart portal for me. Unlike the St. Joseph Hospital portal, I don’t think I got an email notification. I just check now and there are several documents and a list of things for me to do.

Nuclear medicine stress test (Lexixcan)
Transition off my current blood thinner medication
Check with primary physician if I need a colonoscopy

Unfortunately, I already had a referral for a colonoscopy from my primary care doctor. Before I was able to follow-up, the heart surgery hit and then COVID-19 and here we are. I’ve already scheduled my CT scan for the thoracic surgeon for next week. Coincidentally, the cardiology department at St. Joseph called me today to schedule the Lexiscan. The person on the phone said my cardiologist ordered it for my transplant. UCLA must have called her office since I didn’t update any of my doctors on the transplant progress yet. I hope the two tests are not related, i.e., the stress test will show my heart is okay (should be post-surgery) even though something in the chest cavity causing pressure in my chest.

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Also, my transplant coordinator called me Monday to tell me that the medical director we spoke to last Friday may call me to talk to me again, since we didn’t discuss the minimal cancer risk. I told her I was available in the afternoon, and he hasn’t called yet. He did call my sister however, to let her know that they are progressing with the transplant. Weird.

Shower

Aah. First shower since early November last year. That’s about 10 months of wiping down with a towel and washing hair in the sink. It’s amazing what hot water running through your hair feels like. However, it wasn’t as memorable as the first shower after almost two years of hemodialysis back in early 2019. I think I’ve already took that “first” shower when I started this blog so I didn’t mention it here. The vascular surgeon said it was okay to shower 24 hours after removing the catheter. There was still some blood oozing out of the wound when I changed the bandage earlier but I stuck a waterproof bandage on it, and covered it with a thick woven medical tape. I think that kept the opening dry, though without the catheter, infection risk is pretty minimal.

I made a post a few months ago detailing all the scars and catheters in my torso. With the removal of the chest catheter, I think there are no more holes in me. I still need to cover the exit wound for a few more days.

Hopefully that’s the last of installing ports or catheters for me.

First Catheter Free Night

I just realized that last night was the first night I didn’t have a dialysis catheter sticking out of me in over three years. Since the first chest catheter wast put in on July 3, 2017, I’ve had either a hemodialysis catheter or a peritoneal catheter in me until last night.

It wasn’t very comfortable though. There is still some pain left from pulling the catheter out. I believe the surgery assistant had to cut some flesh that fused (?) with the catheter cuff so that started to hurt when the lidocaine wore off. Also, since I could not lay down flat on my back, I tried to set the bed to the highest recline and sleep sitting up. All that did was to mess up my back. I didn’t get any sleep last night from both the shortness of breath and the catheter removal.

I’m supposd to remove the original bandage at 5:00 pm today. I hope all the bleeding has stopped and the hope is not too big for my bandages. I thought recovery felt easier last time.

Chest Catheter Removed

Second chest catheter removed. It was much easier than removing the first one in the hospital. I went into the doctor’s office, sat in a reclining chair, and the nurse laid me flat. The only problem was she stuck a pillow under my back so to arch my back, but that made breathing 100x harder. I think I was going to pass out a few times. Then the surgeon came in with his assistant, who I’ve met several times. I think the surgeon was more interested in my fistula that he worked on then the catheter (he didn’t put that in). He told me the assistant will remove the catheter, and that I need more fluids taken out since my ankles were swollen. OK, thanks. He’s got to know I’m a dialysis patient and there are literally a team of people watching for edema in my legs.

The assistant, let’s call him “J”, gave me several shots of lidocaine, the wonder local anesthesia, and proceeded to cut the sutures holding the catheter in. I think some of the flesh grew in around the catheter cuff so he had to cut around that too. Then J gave a hard tug, and it was out. Only problem? No one mentioned to him that I was on a blood thinner, and of course no one told me to hold the medication. Blood started squirting out of the opening. I didn’t see this but J told me later. He had to grab a lot of gauze and bandage to stop the bleeding, even asking me to put pressure on the wound. Good thing I didn’t pass out from the lack of oxygen. I was already breathing hard; putting pressure on my chest just made it even worse. Finally, after three gauze changes and lots of pressure bandage tape, the bleeding stopped and I was allowed to get up… and breath. Even thought J tried to wipe it down, there was quite a bit of blood on the chair. After dialysis with the fistula though, I was used to it. No pics this time, I was too busy trying to breath and not pass out. Here’s a photo after the previous catheter was removed if anyone is interested. I assume this one was similar; I didn’t even look afterwards.

Finally, they let me get up and leave, after giving me an instruction sheet. One of the item says: “Do not lay flat for 12 hours after catheter removal to reduce likelihood of bleeding.” Arg! Why did they schedule me for a 4:30 pm catheter removal, knowing that I have to sit upright until 5:00 am the next morning?! I can’t lay flat anyway but they didn’t know that. Other points are pretty normal post-op stuff.

So, another tiny chapter in my life comes to a close. I kinda like the catheter versus the fistula, even though I couldn’t take showers. I heard other people do shower with waterproof tape, bags, and other homemade contraptions to keep the catheter dry. I’m too nervous to try. Maybe that’s why I’ve never gotten an infection after 2.5 years of using the chest catheter. Supposedly I can take a shower after 24 hours, even if the hole in my chest hasn’t fully closed. yet. Hmm… I think I’ll wait. No point having shower water running through a hole and into your chest cavity.

Catheter Removal Later Today

So the chest catheter I got during heart surgery is getting removed today. I’ve had it since November 13th, which is about 9 1/2 months. The first chest catheter I had lasted over 20 months. I felt this time the dialysis staff was more insistent on its removal as fast as possible. Maybe they had some infection cases recently?

The nephrologist doing rounds today came pretty late. I was getting the needles removed when he showed up. I told him about the catheter removal, the upcoming CT scan, and gave him an update on the transplant process at UCLA. I think he knows the doctor I spoke to at UCLA; there was a sign of recognition when I mentioned his name. He also lowered my dry weight again to 86.0 kg and said we may even go to 85.0 kg if I’m okay. He agrees that my ankles are swollen and there may be a few extra kg of fluids in me. That could also affect my blood pressure which has been higher recently. Again, the nephrologist is supposed to be responsible for the dialysis patient’s blood pressure, and he seems the least worried out of all my doctors.

One small bit or worry is that the arterial needle site was bleeding during dialysis again. It’s the third time in a row now. Maybe it’s the blood thinner I’m taking but it does coagulate under the medical tape so it’s not leaking out everywhere. I’m just worried that after today, there won’t be any backup access if the fistula blows up or something. I guess they can always put in a third chest catheter but I’m trying to keep actual holes in my chest to a minimum.

Enough, Make It Stop!

Sigh. Occasionally I have days that are hard to get through. Nothing has changed overnight but I just get fed up about everything. Right now, it’s the heart issues and what seems to be too much fluid in me. I know some people have real scary diseases that cannot be managed. My issues are more like a very slow moving train but it’s hitting new stuff on the tracks. It seems like there is an answer to everything that ails me but the totality is overwhelming sometimes.

For several weeks now, I’ve been having more and more trouble breathing while lying down. For awhile, I could get by sleeping on my right but slowly, that’s not working either. It’s 3:40 am and I haven’t slept one bit. I’ve been trying to get the bed into a position that allow me to breath a bit but have not found it. As soon as my head hits the pillow, I’m gasping for air. Plus the pressure on my chest seems to be increasing as well. I’m pretty positive it’s not the heart itself since I walked 15 minutes on the treadmill last night and felt mostly fine, while bending over to pick up laundry winds me.

Then there’s the swelling in my ankles and feet that seems to be persistent. Post heart surgery, I was pretty bloated and it took a few extra dialysis sessions to bet rid of the excess fluid. Since March, it seems the fluid retention has gotten worse even thought my weight has dropped. I think my real weight (without fluids) is even lower since I’ve been eating a lot less, and I still have too much fluids in me. I haven’t come close to the amount of cramping as before on hemodialysis. Maybe I can ask the nurse to pull more fluids out today, or see if I can talk to a nephrologist since it’s Tuesday.

The current situation is that I run out of breath kind of randomly, probably based more on body position than exertion. My doctor friend thinks it may be the chest wall healing and constricting, while my cardiologist thinks it’s musculoskeletal too. I need to call today to set up that CT scan so the thoracic surgeon can see what happened. The excess fluid is just uncomfortable since I can feel the extra pressure as more nephropathy. I think the danger is that the skin will stretch out and crack, and I’ll get several spots where infections can take hold. Infection of the feet for diabetics is bad news.

3:51 am. Maybe I can sneak in a 30 minute nap before leaving for dialysis. Another week of life in paradise…

Ophthalmologist

I went to see my ophthalmologist today, after about 14 months after the last appointment. I’m supposed to see them every year to check for diabetes related eye damage. Since I’ve been keeping my blood sugar under control and lowered my A1C readings, my eyes have been pretty stable, and some of the prior bleeding in the retina has healed.

The office was very careful due to COVID-19. First you had to call them when you arrive so they can confirm your appointment and collect payment information. I kept saying I’ve reached my out-of-pocket maximum but they wanted to co-pay anyway. Supposedly they will reimburse me if when the insurance double-pays the co-pay. We’ll see…

After I went into the office, they took photos of my retina with a huge special camera made by Nikon. Next, they brought me into a room for medical interview and a preliminary check of my eyesight. Since last year, I have two pairs of glasses: one for reading and one for driving. However, it takes quite a while for my eyes to adapt so for a short period, everything is blurry. I couldn’t read any of the letters they threw up on the wall. Embarrassing. Next they dilated my eyes using some eyedrops. About two hours later, I still can’t see very clearly. Finally, the doctor came in to examine my eyes. My usual doctor is either not in or busy so I got another ophthalmologist, a Korean lady, and everything seemed to go well.

I got referred to a retina specialist again. They made the same referral for three years but kept telling me it wasn’t important. I have so many medical issues that if something isn’t important, it’s not getting looked at. I told her I would call and make an appointment this time.

Hot Sandwich Lunch

I started this post yesterday but had to go to my sister’s house for dinner so I didn’t finish until today. We ended up playing mah-jong for about four hours and I ended up losing $12.

So Saturday after dialysis, I thought I would try something else other than my usual at Rising Cane’s, so I got a Philly cheesesteak sandwich at Jersey Mike’s on the way home after charging my car. It was okay. I’m not a big fan of bell peppers and this had a lot of them. The meat was pretty good but the nutrition information was saltier than it tasted. I’m not sure if it’s more healthy than fried chicken fingers though.

Nutritional Item	#17 Philly	#8 Club Sub	Box Combo
Total Calories	720 cal	1,100 cal	950 cal
Total Fat	29 g	72 g	47 g
Saturated Fat	14 g	13 g	6 g
Trans Fat	1 g	1.4 g	0 g
Cholesterol	117 mg	95 mg	160 mg
Sodium	2,187 mg	2,483 mg	1,030 mg
Total Carbohydrates	68 g	69 g	73 g
Dietary Fiber	3 g	4 g
Sugars	9 g	8 g	1 g
Protein	44 g	42.5 g	57 g

https://www.jerseymikes.com/menu/nutrition

The Box Combo only has the chicken fingers and fries since I typically don’t eat the bread nor the coleslaw. If I’m most worried about salt intake, then the chicken fingers are not bad. The two sandwiches uses up the entire day’s DV for sodium. For about the same price, I probably like the chicken fingers the best, especially if you eat it as soon as they give it to you. They’re not as good when they cool down.

Long term thought, I need to find a lunch solution. I don’t mind getting take-out every day but it does get expensive. The Box Combo is $9 with tax. Most of Jersey Mike’s sandwiches are $9 before tax. If I get the chicken kabob at Panini Grill, it’s $15. I tried getting frozen meals but there are a lot of added phosphates that I should avoid. For awhile, I was eating salad that were freshly tossed at work but it turned out they used a lot of dressing. The salads taste great but the dressing basically kills the nutritional part of it with lots of calories, fat, and salt.

Bleeding Out Again

Today was the second to last day of dialysis with the chest catheter still intact. Even though we’re not using it, it’s good to know it’s there in case the fistula becomes troublesome. The needles went in pretty smoothly today, but there was some sharp pain in the arterial line as we started dialysis. This is the line that leaked blood all over the place last session. I guess the pain should have warned me that there will be bloodletting today too.

I was so tired from not sleeping that I fell asleep right away but woke up at ~7:00 am. I looked at my right arm and there was a trickle of blood coming from the arterial line again. I called the nurse and she cleaned it up, this time putting a alcohol pad on the insertion point as well. About two hours later, I look again and both the pad and the tapes seemed saturated with blood. I got a picture this time but it’s pretty gross. I don’t know how to embed photos other than as an inline graphic so no room for a trigger warning.

This was all coming from the lower needle; the upper venous line was doing great. By now, most of the blood had clotted so the tech said to leave it until the end when she removed the needles. There was still sharp pain coming from that area for the rest of the session and a lot of blood when she finally took all the tape off. Nobody was concerned though so not sure if it’s a big deal if it leaks each session. I’m just afraid I’ll fall asleep and bleed all over the floor.

Perfect Hemogram

I’m not sure what a Hemogram tests for but the dialysis center draws blood for this set of labs during the last week of the month. Here are some results:

Hemogram	7/16/2020	7/30/2020	8/13/2020	8/27/2020
White Blood Cell Count	5 k/uL	4.8 k/uL	4.2 k/uL	4.3 k/uL
Red Blood Cell Count	3.3 M/uL	3.28 M/uL	3.35 M/uL
Hemoglobin	10.7 g/dL	10.4 g/dL	10.7 g/dL
Hematocrit	32.3%	31.3%	32.3%
Mean Corpuscular Volume	97.8 fL	95.6 fl	96.3 fL	95.1 fL
Mean Corpuscular Hemoglobin	32.3 pg	31.7 pg	32 pg	31.5 pg
Mean Corp Hgb Concentration	33 g/dL	33.1 g/dL	33.3 g/dL	33.2 g/dL
Red Cell Distribution Width	14%	14.3%	14.6%	14.8%
Platelet Count	114 k/uL	164 k/uL	148 k/uL	159 k/uL
Mean Platelet Volume	10.1 fL	9.6 fL	9.2 fL	9.5 fL

Maybe not so perfect. The red numbers are results outside of normal range; every red number above was low. I know I get Epogen injections at the dialysis clinic. Evidently it’s for those with anemia or low red blood cell counts. I usually don’t notice since they inject it into the machine and the drugs flow back through the dialysis return line. Weird how the last set of test results just excludes the traditionally low categories. Maybe the results will come later. This is another item that I don’t understand post-transplant. Will I still need to take Epogen or equivalent? Or does the “new” kidney produce hormones to counteract the anemia? Will it work if it’s from a “foreign” kidney?

Chest CT Scan

Another twist in the healthcare saga. I spoke with the thoracic surgical nurse and explained my situation with the chest scar, keloid, pressure, and weird clicking sounds. She thinks I will need to get a chest CT scan then see the actual surgeon that performed the bypass surgery. They have to call me back to arrange a time for the scan. I asked what it could be and she said it may just be cartilage, for which there is no fix. I also may require additional surgery if it’s something they have to fix.

I can’t believe this news is coming on the same day as the transplant call. If I have to get cut up again, I’ll need to go on hold again and delay transplant for months if not derail it. I can’t win.

UCLA Video Call

We had our call with UCLA transplant center‘s medical director this morning. They wanted me to log on 30 minutes before the meeting so I was at my sister’s house at 7:00 am this morning. The call used some meeting function in myChart from Epic, which is a large provider of online health data according to my sister. The issue is only I had an account at UCLA Health and they wanted both of us on the call.

A coordinator came on 20 minutes before the meeting and got my medication list updated, then we spoke to the doctor for about 20 minutes. He didn’t really discuss the kidney cancer/tumor issue at all but more of a update on my status meeting. At the end, he said he will recommend to the teams to move forwared with the transplant. My sister will have to repeat some tests that are over a year old, and I’ll need to do a heart stress test and get a colonoscopy. Crap!

After speaking to the medical director, my transplant coordinator came one the line. I don’t think I’ve talked to her before. She said the previous coordinator I spoke was mainly for people on hold. Since I’m active now, whe will be my coordinator. I feel a lot better that they’re not rejecting or delaying my sister as a donor. As long as we pass the medical tests, I think the transplant will come fairly soon.

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My coordinator just called me again asking if the doctor specifically mentioned the cancer risk if I accept my sister’s kidney. He did not go over that part even though it was the original purpose of the call. Sigh… he may have to call me back again. The neverending story…

Bleeding Out

Okay, I’m exaggerating but there was a lot of blood. About three hours into the dialysis session, I noticed that there was a growing bloodstain on the waterproof napkin they were using to line the dialysis side tables. I looked at my arm and the lower needle (arterial) was leaking blood. I pushed the call button, much like in an airplane but not quite, and the tech came over to help. She said that leaks happen occasionally and it was nothing to worry about. She proceeded to get some alcohol swabs and wiped away all the blood running down my arm. She then replaced the medical tape holding the needle down, and promised me that she would finish cleaning up when the session was over.

I wasn’t too bad. The bleeding had stopped when she changed the tape, and post-dialysis clean up was pretty easy. Still, it was weird watching your own blood leak out of a rubber tubing and not being able to stop it. I really don’t like this fistula but since the chest catheter is coming out Tuesday, I’m stuck with no other options going forward.

Sorry, I didn’t get any pics.

Treadmill 8/28/2020

Weird. I just walked on the treadmill for about 10 minutes and I feel somewhat okay. I am breathing harder than usual but it’s not as bad as walking across the church parking lot tonight. Maybe I’m walking much faster in real life than on the treadmill? I was walking kind of slow… the treadmill was only going 1.2 mph or 50 minute miles. I usually walk twice as fast. Is that the difference?

It also doesn’t explain the bone movement and sound coming from my sternum. I guess I’ll have to wait until I speak to the thoracic surgery nurse. Musculoskeletal problems don’t sound much better than coronary artery disease.