Daily struggles with dialysis > CABG > kidney transplant > fused right ankle > delayed tolerance program
I received an email from my transplant center pointing me to a form letter. It’s an annual bulk letter letting patients know they are still on the transplant wait list. Even though I switched transplant centers after the initial screening, I was told that my accrued time started when I was first placed on the list, about 2.5 years ago.
Since fluid control is so important with dialysis, we’re asked to weigh ourselves before and after the treatment. I was given a digital scale when I first started training for PD, though I’m using my old FitBit Aria wifi-enabled scale. This was true for in-clinic hemodialysis too. The nurse would decide how much fluid to remove for each session. I think my max was 3.5 kg or about a gallon.
Anyway, over the last two weeks, I’ve lost about 7 kgs of weight. Most of it was fluid but since I have no appetite most of the time, some of it is probably muscle loss. The swelling in my legs and feet have gone down a lot so I think I need to start eating a bit more. I read online that some patients lose >50 lbs on PD; that doesn’t sound healthy.
Found this video on YouTube. Its pretty much what I do every night.
It was another terrible weekend.
It started with a late work dinner on Thursday. I didn’t get home until after 10pm so it was a rush to setup and connect. I am also at the end of my supplies so all I had were yellow bags (1.5% dextrose) of solution. As explained in a previous post, all yellow bags will make the cycler beep on every drain cycle and that’s what it did. Basically I spent the entire weekend in bed. The only meal I had was some bread Saturday.
Tired and hungry. I think that has been my experience with PD so far.
I haven’t been sleeping much on PD due to either the under-drain alarm, or overfill on the subsequent fill. I think, worst case, the cycler leaves about 600mL in my abdominal cavity during each drain cycle when I’m lying down (i.e., sleeping). If I use two yellow bags (1.5% dextrose), then the UF for each cycle is probably ~100mL for a total fluid volume of ~2500mL. If 600mL is left, then the cycler only drained 1900mL. However, there is a minimum drain setting (to avoid overfill) of 85% which is 2040mL. This is greater than the 1900mL drained so the machine will beep endlessly until I either sit or stand for more fluid to drain.
If I use green bags (higher dextrose concentration), the UF is about 300mL. I clear the minimum drain amount but then I am overfilled for the next cycle which eventually wakes me up. So either hearing an alarm or feeling bloated, I’m still waking up 2-3 times per night and going to work tired. Not much to do unless I sleep in a chair or get a reclining bed.
Fibrin is an insoluble protein that is formed during the clotting of blood. If I look closely at the drained fluid, sometimes I can see thin white strands of protein. Over time, that stuff will collect and clog toilets and other drains. I’ve noticed that my toilet has started to flush slower so maybe there is a fibrin buildup.
I read online that the solution is to put a bit of enzyme cleaner that eats away organic matter. I found this on Amazon and will start trying it this week.
I had some bad cramps while on hemodialysis. Usually my calf muscle or ankle would cramp if they try to remove more than 2.5kg of fluid during the session. After switching to PD, I’ve had some small cramps, usually in the ankles, but would go away if I stood up.
Well, I had a massive cramp this morning. Basically my entire left leg started cramping. It was mainly in the inner thigh but at one point I was cramping in three places in my left leg. During bad hemodialysis cramps, the nurse would pump back some saline solution through the catheter. For PD, there is no shortcut. I drank some water and in case I was low on Potassium, looked for a banana to eat. Fortunately, the cramp(s) went away after about 10 minutes.
As part of my dialysis treatment, I get bi-weekly injections of Aranesp. I believe it’s to help with anemia. I got a few syringes from the PD nurse today and decided to Google: https://www.aranesp.com/
Good grief. The landing page of the website begins is basically all warnings.
I know all drugs have side effects and you hope the good effects outweigh the bad effects. I don’t know… this Aranesp sounds pretty nasty.
One of the biggest worries for PD is peritonitis or an infection of the peritoneal membrane. It’s supposed to hurt a lot. Also, if you get a lot of infections, the membrane may lose its ability to filter toxins and you will need to go back on hemodialysis. Therefore there is a huge emphasis on keeping everything clean and sterile as possible.
A few days ago, the drain bag came loose during the midday drain. I had just connected the bag so I was still quite full of fluid. It was shocking to see a stream of fluid come out of the connector and on to the floor. Not thinking, I stuck my thumb over the port opening. Ugh… the one thing they keep stressing is that you never touch the connector tip. I grabbed a new drain bag, disinfected the connector again, and reconnected. I was worried that I may have contaminated the connector but everything seems fine so far. I did wash and sanitized my hands prior to the incident so maybe I got lucky this time.
Baxter delivery guy just left. They told me the delivery was scheduled for 7:50am to 9:20am but the truck came at 6:50am. I haven’t disconnected myself from the cycler so I had to yell for my mom to open the front door. Not sure what would happen if I was the only one home. Ask the driver to hang out for 5 minutes while I disconnected?
I’ve thought about this post for a long time. It’s one of the main reasons I started this blog thing.
I’ve been going to church (on and off) for almost 30 years. At my first church, I served a lot. I led bible studies and small groups, taught Sunday School to adults and kids, helped out with Youth Group, led worship, and even became a Deacon for a few years. This continued when I moved and switched churches, mainly running the sound equipment and playing bass. There were also several years where I didn’t go to church at all.
About three and a half ago, I started attending my current church. It’s mainly Korean American (English services) and there’s about 800 adults each Sunday. From the outside, it looks like many churches I’ve attended in the past. In comparison though, my current church is fairly charismatic; there is a big focus on the Holy Spirit, prophecy, speaking in tongues, and especially healing. It’s a very different environment from what I’m used to.
I joined a small group when I first started attend this church. At the time, I was just becoming aware of my kidney issues. I shared a lot regarding my medical issues and there was a lot of prayer. There were several times during Friday night prayer and Sunday service where the pastor called me up to the stage, and had the entire church lay hands and pray for healing. He has even come to my house to talk to me about healing and to pray one-on-one.
Even though I’ve served for many years at different churches, I’ll be the first to admit that my faith is not that strong. I don’t pray regularly and treated church like another job. During one of the Friday night prayer meetings, the pastor asked me to stand (along with a few others), and other church members surrounded me to pray. I remember after about five minutes, he asked me if I felt anything. I said no, and he asked everyone to keep praying. What?! Eventually everyone sat down but I was pretty confused. Having only read stories about healing, I wasn’t sure what to expect. There was no healing that night (or later), and I began dialysis a few months later.
What do I make of this? There are many stories of healing in the Bible. Matthew 9:20-22 (ESV) says:
20 And behold, a woman who had suffered from a discharge of blood for twelve years came up behind him and touched the fringe of his garment, 21 for she said to herself, “If I only touch his garment, I will be made well.” 22 Jesus turned, and seeing her he said, “Take heart, daughter; your faith has made you well.” And instantly the woman was made well.
Is my faith not strong enough? Is the faith of the congregation not strong enough? Jesus said very clearly to the woman that her faith has made her well. There is a sermon on healing this weekend and the church has invited some special guest to talk about healing and revival. Several church members have told me that I should attend. Of course I’ll attend but do I need to go fully expecting to be healed? What if nothing happens again? In the verses above, the healing is physical. Is that what I need most?
During my last appointment, my PD nurse said that it should be okay if I need to skip a day of dialysis. Of course it’s not recommended but my stats suggests that missing a day won’t have much impact. That’s good to know. There were many days where I basically collapse into bed as soon as I get home from work but still managed to get up and set up for dialysis.
I almost skipped dialysis last night. Our small group from church had a birthday dinner. As usual, we ended up at an AYCE Korean BBQ place. I left dinner early but still didn’t get home until 9:45pm. After taking a shower to get rid of the smell, it was almost 10:30pm when I started the cycler. I ended up cutting the last dwell short by 20 minutes to finish by 7:00am this morning so I wouldn’t be late to work.
PD basically limits my activity during weekday nights to nil. I guess I’ll “save” the skip dialysis card for when I really need it.
Article from Kaiser Health News
So Fresenius (second largest for-profit dialysis provider) charged him almost $14k per session. From my previous post, the cost per session for DaVita is ~$280 so that’s ~50x markup. I know they have to charge private insurance patients more but that seems ridiculous. When I was on hemodialysis, the list price was ~$30k per month at the first clinic but my insurance paid ~$21k. Still crazy expensive vs. that it cost the clinic to provide the service. The second clinic charged $2,039.50 list; the insurance rate is either $729.50 or $458.28. Without a itemized bill, it’s hard to figure out what is in the numbers.
I also received the first bill for my peritoneal dialysis. I thought it was going to be a lot cheaper than hemodialysis. It is cheaper but not by much. The list cost is $874.49/day and my insurance pays $328.79/day. For June, the net bill came out to ~$10k so about half of what hemodialysis cost me.
This is month 25 of dialysis for me. That means I have about 8 months of private insurance left. After that I will have to go on Medicare which means a lot less profit (or even a loss) for my dialysis provider. I’m grateful for my company’s health insurance (self-funded) but seriously, the American healthcare/insurance system is messed up. Not sure what the solution is but we seem to have the highest costs in the world.
The thing I miss most is the ability to travel. I had to add additional pages to my previous passport since I ran out of room for visas and immigration stamps. I used to save my boarding passes and one year I had 56 of them. Now I have not gone anywhere overnight for over two years. I guess I could have taken 2-3 day trips while on hemodialysis (leave Saturday night and come back by Tuesday morning) but I was always too tired to try.
Even though they said travel is possible while on peritoneal dialysis, it seems like such a high hassle. Either you have to bring the cycler with you in a huge rolling case, or do manual exchanges all day while on the road. Sigh…
I read that on average, patients can only live for about 10 days after stopping dialysis. That’s not very long at all.
I’ve donated a few dollars to the artificial kidney program at UCSF. It always bothered me that they don’t have enough funds to run clinical trials and are always looking for donations to continue research. Since the government spends so much Medicare money on dialysis, I thought it would be a high priority to fund artificial kidney research. Maybe there is not much focus since only a small percentage of dialysis patients are eligible for transplants; some are so sick that the procedure will probably kill them.
Here is more info on the UCSF program:
Most days I’m okay, just glad to be still alive. I’m still working full-time and can drive and get around. It’s just a huge inconvenience.
Other days however, the despair is so heavy that it feels like a weight on my chest. It’s a cliche that all this feels like a dream and I just need to wake up but I can’t. With such a long waiting list for a transplant, it may as well be forever.
Life with chronic diseases 