I found my scale and measured the drained dialysis solution from this morning. I used 2000 mL of 2.5% “green” dextrose solution for two hours and got… 2,505 mL. Woohoo! So I managed to pull ~500 mL of excess fluid using unneeded dialysis solution. Unfortunately, most of my excess supply was for the cycler. I think I only have about 10=15 bags of manual solution of various volumes (2000 mL – 2500 mL) and solution strengths. Maybe I can extend the 2500 mL bag to 2x 1250 mL fills and get close to 1000 mL of UF. To bad I can use the gallons of gallons machine solution; the tube connectors are mismatched for manual dialysis.

What I have may be enough. I think I only need about 5 kg of extra fluid removed for normalcy.

Since I went back on hemodialysis, my legs and ankles have been really swollen. I used to urinate some while on HD before so I was able to get rid of excess fluids. On PD, my urine output has steadily decreased to almost nothing. However, since I can pull about 2000 mL of fluid out using the cycler, and an extra 1000 mL on manual exchanges, it wasn’t an issue either. However, they can only pull about 3000 mL of fluid max each hemodialysis session so I’m down about 3000 mL of fluid removal every two days which quickly adds up.

Tonight, I was having problems sleeping and my feet felt super swollen. I decided I couldn’t wait for my hemodialysis session and needed some fluid removal fast. I can either sit in a sauna or run around the block, both not possible after my bypass surgery, or do a quick manual fill and drain. I have about 3.5 hours of dwell time before hemodialysis and I can likely pull 500 mL of fluid ut of my body by using the old PD catheter and 2000 mL of 2.5% dextrose solution. I’m pretty sure there’s no harm in getting extra dialysis, even if I mix and match the type of dialysis. And 500 mL may help me avoid coming in for an extra hemodialysis session next week just to pull fluids.

Hopefully this time next year I will still be alive from my bypasses, and have received a kidney transplant so life can go back to normal.

Normal = does not suck

All day Tuesday I was coughing up sticky phlegm two to three times a minute. The only problem was that each cough felt like someone was ripping a new hole in my chest. Each cough also causes some bones in my chest to move and grind so all-in-all, it was pretty much the worst 12 hours of my life.

Not sure why I remembered that I had bought some saline sinus rinse awhile back so I decided to try and rinse the snot out of my nose to see if it helps. Bam! Holy crap, the rinse cleaned everything out and stopped my cough and sniffles immediately. It’s like magic. I think maybe fluid was running from my nasal sinus into my throat and causing me to cough to clear the phlegm..anyway, I’ve rinsed my nasal sinus each night since and the coughing is way down.

Hypoglycemia – a condition caused by a very low level of blood sugar (glucose), your body’s main main energy source.

I’ve had episodes of slightly low blood sugar in the past. My reading would drop into the 70s and I will start feeling dizzy and sweaty. I keep a supply of glucose pills and juice boxes on hand for such an occasion. Last night, my blood sugar evidently dropped to the 30s for some reason and I became delirious. My parents found me unresponsive then speaking nonsense. They called 911 at around 7:30am this morning so after only 2 days/nights out of the hospital, I was back in the ER again. I was later told that I was lucky my parents got me to the ER quickly; sigh… I’m tired of almost dying all the time.

The whole event was surreal. I remember my parents calling 911 over my objections, and the ride in the ambulance with the paramedics. It all seemed like watching a movie and I was wondering the whole time if this was real. They made me drink some kind of glucose shot in the ambulance and I remember puking along the way. We ended up at St. Joseph hospital ER again. They were a bit rough getting me there so I’ve been super sore all day because of the huge scar/wound in my chest. I tried to eat and puked some more so the nurse pushed a huge syringe of dextrose through an IV line… ouch! My blood sugar rose from the 30s to the 60s, then to 150 and 200, and stabilized at 155. I ended up eating some Jell-O, applesauce , and half a dry, turkey sandwich before they would let me go home. Hey, anytime you go to the ER without being admitted to the main hospital is a win in my book.

So now, we are checking my blood sugar every 3 hours in case I freak out again. So far it’s been between 100 and 200 so fingers crossed. This recovery is becoming harder and harder each day.

If it seems like I’m complaining all the time, I’m actually glad to be alive. Kidney failure used to be a death sentence until dialysis became widely available. And I could have had a massive heart attack or stroke instead of the successful bypass surgery.

Having said that, everything else sucks ass about dialysis and surgery recovery.

First day out of the hospital was rough. My tooth and tongue were still hurting so I made an appointment with an old cell brother. He put an emergency filling in for me. The trip there was weird though; I’m still dizzy when I stand so it was fun getting to his clinic. I also had my first dialysis session at Sister Elizabeth building in St. Joseph hospital last night.

I was thinking that heart recovery surgery was hard already and then add kidney failure to the mix. Then I had my foot pain neuropathy flare up. Every 30 second I would feel like someone stabbing my foot with a knife. This also triggerey chest pains until it was almost unbearable. I finally got some painkillers though and had a good night’s rest.

Finally home after 10 days in the hospital. My insurance covered everything so far; I can’t imagine what this would cost if I had to pay out if pocket: $100k, $250k, $500k or more? Same question but more utilitarian, “How much do we spend to save a life? What if that life is already > 1/2 over? What if it was a child with many years to live?” I don’t known the answers, just glad to be alive.

So the pain has gotten worse, if that is possible. The discharge team called in a huge list of prescription but they forgot the painkillers. Ugh. I won’t get then until tomorrow morning so a rough night ahead.

Holy crap! Health providers have a pain scale where they try to determine how much pain you are experiencing. The scale goes from 0 to 10 where 0 is no pain, and 10 is the worst you ever felt. I’ve never been pregnant so I’m going to call my chest pains a 9.

Right now I have an itchy throat, making me cough every 15 seconds. However, each cough seems to be moving my sternum, causing unending pain. When I try to hold back, I either eek out a huge cough or dry heaves which is even worse. My back still hurts like crazy so it’s going to be a long, long night. Hopefully, the cough medicine they gave me will work long enough for me to sleep through some of the pain. Recovery is gonna suck.

Ouch. Now my chest is hurting. I guess recovery won’t be as easy as I thought. The pain is getting bad. I’m on Percoset pretty consistently now. Hope I don’t need anything stronger. A nurse mentioned Oxy; pretty sure I want to stay away from that.

Also listening to impeachment hearings where Ambassador Sondland is testifying. I truly believe the lawyers are making things worse by confusing everyone and putting words in the mouth of the witnesses. Every word is beaten to death and simple answers are dragged out so nothing is understandable anymore.

Walking is hard. I just went for my fourth lap around the building today. You can’t imagine how hard it is to walk a few feet. I got dizzy a few times and had to stop to get my bearings. There is one muscle in my back that is killing me. I have an awesome water fed heat pad and a Brookstone massager so hopefully something will work on my back.

I’ve had lots of visitors at the hospital, more than I thought was going to come. After surgery, my sister and my parents came everyday and will be back tomorrow,.

Today, I got a few visitors from church. Two pastors and a staff member cam by to talk to me. I’ve never met out new assistant pastor but he seems like a great guy. He gave a sermon on the difficult road that sometimes God put you on. Good thing I listened to the sermon and was able to apply/think about implications in my life.

Our caring/counseling pastor also showed. He is also a chaplain so he visits a lot of sick people in many hospitals. Another point of perspective for me to think about.

Overall, the room service food at St. Joseph hospital is not bad. I probably rate it a out the same as our work cafeteria except there is a bit more variety at work, and everything is super salty. There are actually many food choices available for patients but since I have to conform to renal and cardiac requirements, the final available set of food I can order is really small. I’ve been getting the teriyaki stir fry which has chicken, vegetables, and white rice. I then get the chicken noodle soup and some dessert. Again, not bad.

To order however, you call an extension and place your order by voice. Half the time, the extension doesn’t work, and the other half of the time, the line is busy. Once you place the order, it takes 45 minutes for the food to arrive so there is a significant wait if you were really hungry.

I have to be more diligent when I leave the hospital. Otherwise I’m going to eat whatever and be in trouble again.

It was a weird feeling to go through an entire day in the hospital and not really know what day it was. The main reminder was actually Monday Night Football. The Chargers lost the game but I was able to squeak out a win in fantasy football.

Monday was another day of boredom at the hospital. Some of the nurses are putting in consecutive days/shifts so I’m getting to know them pretty well. All are professional and nice to their patients. I am still trying to stand up without falling down from afib; I think the IV Amiodarone is working. Drug is supposed to be very toxic so I want off ASAP.

Hemodialysis is going well. I had another session yesterday (Monday) and felt a lot better than previously. They came and flushed out my PD catheter but it’s still there waiting to be removed. Blood pressure, heart rate, and blood sugar have all stabilized so maybe I can get out of here soon.

Sorry but a lot of these posts have small post-publish edits. I typed most of the hospital and ER posts on my iPhone and iPad and I am horrible at typing on the small keyboard. I fixed most of the errors using my work computer so the edits will probably continue.

I think at some point I said I’d rather have cancer than kidney failure. You can “cure” cancer into submission but without a transplant, there is no end to dialysis and kidney failure.

Well, again I was stupid and speaking nonsense. While visiting me yesterday, my sister found out that a good high school friend is dying from terminal cancer. It is too late for chemotherapy so the friend’s mom is looking for a final resting place hospice. In comparison, open heart surgery and kidney failure is not that bad.

I can also see the effect this tragic news has on my sister, which makes me realize how selfish I was. Sure, it’s my life to live or not, but that decision has a huge impact on family and friends. I shouldn’t be talking or making decisions about my life so flippantly.

Today is Monday so I’m starting my second week in the hospital. I’ve continued to go into afib when I stand and that’s causing weakness and nausea. I think they need to keep me longer for observations since they can’t let me go home like this. Hemodialysis has been going well since my blood toxicity was pretty high on PD. I think my creatinine has dropped from 20 to 7 already.

I am still in a lot of pain, especially moving or coughing up phlegm. I think things are getting better though. I also found out that I will be going back to Sister Elizabeth for dialysis on TTS (Tuesday/Thursday/Saturday). I know everyone on TTS shift so the transition should be easy. Just waiting to be discharged from the hospital now.

That’s it. No more peritoneal dialysis (PD) for me. After five months, it’s just not working out. My blood is as toxic as ever and creatinine levels are up to 20. Ridiculous for someone on dialysis. Since I’m not cured and will have to continue with hemodialysis for awhile, I will keep this blog going but focus on the struggles of hemodialysis, especially when I will be an invalid in the next few months, recovering from open heart surgery.

I’ve been struggling with this simple question for awhile now. Why me? Why didn’t God just heal me? Is He ignoring the prayers of hundreds of people? What kind of God allows His people to suffer anyway?

The thing I hate most now is becoming a burden. Even after the difficult recovery, I still do not have good kidneys. Living with dialysis is hard enough. Now we add heart surgery? At what point do I just give up? Now that I have no urine output, 10 days is all it takes to move on and not be a burden anymore. I’ve thought about this more than once. 🙁

So what do I do now? I’ve always worked since high school and to have months of disability ahead is scary. Lots of physical therapy ahead and hopefully plenty of healing. I do think that my mind needs more healing than my body so I have to figure that out first and find meaning in the midst of all this suffering.

I hate IV’s. It usually hurts and you can’t move or bend your arm. I don’t remember having 8 IV drugs/fluids pushed into me but it’s got to be some kind of record.