None of the doctors I’ve spoken with has any advice. The surgical nurse practitioner did mention melatonin but that has not worked. If this keeps up, I think I will need to get stronger prescription sleep aids, or look at anti-anxiety medications as suggested by my therapist.

I managed to get about 4 hours of sleep last night/this morning. That’s better than the entire previous week but I was basically falling asleep on my feet. I don’t think that can be the norm going forward.

It’s a combination of physical and mental. My back and chest are sore and does hurt when I lie down. I still can only sleep on my back; sleeping on the sides causes more chest pains. But sometimes when I get semi-comfortable, I just lay there, not sleeping, until something makes me get up… typically the neuropathy numbness in my feet. My doctor friend suggested gabapentin for peripheral neuropathy symptoms but like most drugs, there are lots of potential side effects.

So today finally arrived. One of the pain-points in this recovery was the no driving rule. Most places say that you should wait 6-8 weeks before driving again since an accident may severely damage the healing sternum. A brochure from the hospital had a line for week 5 of recovery that basically said, “You may start driving unless instructed otherwise by your surgeon.” I had spoken to the surgical nurse practitioner last week and she said I should be able to drive this week. With the additional clearance from the cardiologist today, I think I’m ready.

For my first trip, I decided to drive to my therapist appointment this afternoon. Since it’s the first time behind the wheel since I drove to the ER on November 11th, my dad came along as passenger. The trip was all on local streets and only 13 minutes long, but I was still able to use autopilot for about 60% of the trip. If felt a little unnatural driving since I’ve been a passenger for 5 weeks, but the feeling passed quickly. The only snag was that I had to parallel park the car at the destination. I could not get the auto-park sensors to recognize the spot so I needed to park it manually. I did get the car parked with about 2 feet of room front and back but all the turning was difficult on my chest and shoulder muscles.

Since it was only an hour, my dad waited for me during my session instead of driving back home. The drive home afterwards was also uneventful, though I noticed almost everyone drives fast. I was mostly going the speed limit and being passes by every car. I’m not sure if I’m ready to drive to dialysis yet since the most direct route takes the freeway for about three exits, and totally uncertain if I will be able to walk out after dialysis due to my arthroscopic hypertension.

It was a good meeting with the cardiologist this morning. I was a bit worried because I have never met this doctor before; the cardiology office reassigned me to her and she will be my primary medical contact through this ordeal. She turned out to be great and took the time to answer all my questions even though she was running late on appointments at 10:00 am already.

When she first came into the exam room, the first question was, “Did you sign up for cardiac rehabilitation?” I told her they were waiting for a referral and she said should would send it in ASAP. She then did a quick exam then let me ask my long list of questions. Basically, her office would clear me for additional medical procedures (including kidney transplant), or anything that requires anesthesia or chance of uncontrolled bleeding. She then said I could drive! The next follow-up is in three months. Having gone through almost five weeks of recovery, I can’t think that far ahead yet.

My sister made dinner reservations at Ma’s Place in Laguna Hills. It’s a halal Chinese restaurant. I was unsure whether I was going to go since I just got home from the ER at 5:00 pm and super tired. Since I’m usually sitting at home going crazy, I decided I needed to go out. I took a quick 60 minute nap and went with my parents to the restaurant. I was also worried since I’m still occasionally throwing up while eating at home and didn’t want to have that happen in the restaurant.

https://www.yelp.com/biz/mas-house-laguna-hills

The restaurant was in a large outdoor mall next to a Marshall. It was pretty busy but since we made a reservation, we were seated immediately. The food was pretty good; I got to eat a bit. I still ate a lot less than normal but at least I didn’t feel nauseous at all. Most likely I can deal with restaurant food because they probably use more salt and other spices than my parents, who are trying to cook healthy according to the dialysis nutritionist. Maybe the stronger flavors help me taste and swallow the food.

I measured my blood sugar at 6:00 am and it was only 89. I probably still need to eat more to better heal and avoid another episode of hypoglycemia.

I finally have my appointment with my cardiologist this Monday at 10:00 am. I’ve been “looking forward” to this appointment since the cardiologist is the primary contact person for the heart surgery. The surgical team just makes sure that the grafts are in correctly; all other heart relating issues are handled through the cardiologist. Even though it’s the same office, the cardiologist I’m seeing is new to the practice and it will be my first time meeting her. My primary doctor said that many patients have met the new cardiologist and like her.

Primarily I’m looking for clarity on timing and clearance. When can I drive? When and how do I get off hold status at UCLA Transplant Center? Am I cleared for other procedures, such as PD catheter removal, colonoscopy, dental work, etc. I’m keeping a small notebook as kind of a medical journal to keep track of medical information. For this upcoming appointment, I filled an entire page with questions but ended up typing everything on a computer so it’s more organized. Hopefully I’ll know more have less anxiety after this appointment. I’ll blog later on when I can drive and if there are any updates on donor transplant status.

I’m experiencing all sorts of stuff on my recovery journey. Starting yesterday, I noticed I started smelling hints of cigarette smoke, mostly when I’m at rest at home. No one in my household smokes and no one else smells it. I Googled “phantom smell of cigarette smoke” and got phantosmia. Most common cause is a sinus infection but causes go all the way up to brain tumors and strokes.

I think I’ve had other instances of smelling non-existent cigarette smoke before so I’m not too concerned yet. I may have done it to myself a few days ago since I used the saline rinse but got lazy and used tap water. Until now, I’ve always used either microwaved bottled water, or hot water from our water dispenses which uses drinking water from 5 gallon drums. I read online that you really should not use tap water. Coincidentally, the smoke smell started the next morning. I’ve rinsed out my sinuses one more time since then using drinking water but the smell remains. The weird think is that it only appears after I’ve stopped moving, i.e., either sitting down in a chair or lying in bed. If I’m moving about, I don’t notice the phantom smell. I hope it’s just a temporary thing and goes away like before. I should have brought it up while I was in the ER yesterday afternoon. “Hi, since I’m here, let’s go over my entire list of medical complaints!”

https://www.mayoclinic.org/diseases-conditions/temporal-lobe-seizure/expert-answers/phantosmia/faq-20058131

Previously, I spent about 22 months on hemodialysis. Even though it was a pain-in-the-ass to go in every other day, I remembered it as mostly tolerable. This time, likely due to the heart surgery recovery, I’m having a much harder time. Due to chest and back pain, it’s hard to sit so the 3.5 hours of dialysis, even though it’s the same duration as previously; it seems like torture this time.

Today, I sat for over an hour doing nothing, then pulled out my iPad to watch Season 4 of The Grand Tour, which was about 1.5 hours long. When the show was done, I started not feeling well. I can’t describe exactly what was wrong but remembered feeling hot and wanted to end the session early (I’ve never ended a hemodialysis session early). The nurse came by and asked me if I was okay, and I answered I wasn’t sure, which was like pressing a panic button. The nurse make me raise my legs and lowered my head, as well as giving me oxygen, and trying to stop the dialysis session. I’m not sure what she did but the machine started beeping loudly non-stop, and pretty soon there were four nurses around me messing with the machine and the connection to my catheter. I distinctly remember the nurse saying she wanted to push my blood back in me but also had me unhooked at one point. Anyway, they decided that due to the worsening numbness in my hands and feet, the should call the paramedics. Arg!

So soon the paramedics arrive, all six of them, and they started hooking me up to monitoring units and asking a lot of questions. I felt better at this point but the numbness in my hands and feet were still pretty intense. I hoped it was part of a reaction to taking (and stopping) amiodarone, and nothing else. Since the numbness wasn’t really subsiding, paramedics decided to take me to the ER, which was about 500 feet down the street. Anyway, got strapped into a gurney, put in the back of an ambulance, and took a 60 second ride to the ER. It was just enough time for me to find my phone and text my sister that instead of picking me up, she should come to the ER instead.

At the ER entrance, I was unloaded and pushed through the ambulance only door and into room 29 (the highest number I saw was 45). Soon doctors and nurses came to ask questions and take blood samples. After waiting about an hour, the ER doctor said they could not find anything wrong with me. All the labs came back normal except for my troponin levels which were at 0.24. Seeing that i was at 4.5 to 11 during my first ER visit, he thought the value was ok for heart surgery recovery. To be sure, they ask me if I wanted to wait two hours and run the test again. I said sure and the second test said 0.23. With that, the ER said to get dressed and go home. My sister and cousin visiting from Canada kept me company for the four hour ordeal.

I’m glad it was nothing but I can’t keep going back to the ER. Ambulance rides are paid for since I pay the city monthly, and likely all expenses are covered by my work health insurance. However, I don’t know if these post-surgery visits count as strikes against me getting back on the transplant list or lengthening the time it takes to go forward with a live donor transplant. Seriously, I don’t know how I’m going to survive the next dialysis sessions yet I have endure many more months of it.

I asked the dialysis nutritionist how much fluids I can have each day and it sounded like 1.7 to 1.8 liters per day. However, she spoke with my parents on Thursday and now it sound like only 0.8 liters per day for all food and drinks. Arg! I checked with my nephrologist today and she said that figure sounds right since I have basically zero urine output. Whatever water I eat/drink will eventually need to be taken out by dialysis UF. For hemodialysis, there seems to be a limit of <10 mL/kg/hour to avoid cardiovascular complications. For 100 kg and 3.5 hours of dialysis, the max UF would be ~3.5 liters. Since there is three days between dialysis sessions over the weekend, about a liter a day seems to be my fluid restriction. I am already thirsty all the time. I carry around a tiny thermos bottle with ice so I can suck on ice to relieve thirst vs. drinking water all the time. I probably go through about two fills of ice, each one about 200 mL of water. That means about half of my daily water allowance goes to my ice habit. I’m also supposed to drink a Nepro protein shake daily which is another 237 mL of quota used up.

I’m trying to find out what it takes to clear my hold for a kidney transplant. Hopefully we’re talking about weeks to a few months instead of over a year. I think I will go crazy on dialysis for more than a few months.

I’m really struggling with surgery recovery. I still can’t eat without throwing up, and only sleeping a few hours (or less) each night. With additional “side effects” like numb fingers an toes, I really think that some of my struggles are due to the Amiodarone prescription. It takes about two weeks for the drug to kick in; I started having what appears to be reactions about that time. Unfortunately, the half-life of amiodarone is weeks or months so if was suffering from side effects, it will go on for awhile. My nephrologist said I may have been in afib at discharge so the drug was necessary.

Tonight, I tried going to bed at 10:00 pm after taking some Tylenol for pain, and melatonin for insomnia. I think I was almost asleep when my dad came in and asked me something. Arg! It’s now 11:20 pm and I am super tired but can’t fall asleep. Chest is hurting a lot too. Maybe I’ll try to sleep in the recliner later.

I’m seeing my primary care physician later today for the first time after surgery. I had to put her name down on all the paperwork but have not really spoken to her about anything regarding the surgery. I think in this case the cardiologist is the primary contact for the care team. That appointment is Monday but the cardiology office assigned me to a new doctor. I’ve only been to their office several times before the surgery (for something else) so a new doctor in the same office is probably ok. It also appears that the cardiologist is the primary contact for all documentation as well. I filed for a disability claim with the California EDD and the cardiologist needs to go online to provide info regarding my claim. Since they’re the main cardiology office affliated with St. Joseph hospital, they should have plenty of experience with government forms.

Today is also potentially the last appointment with the home nurse program. The RN will decide today whether to discharge me from the program. I think they said that I was recovering well, though I don’t feel it with the nausea and insomnia, probably things a visiting nurse can’t help with anyway. I think it was nice to have someone come by to make sure you weren’t dying but after 4 weeks and doctor appointments coming up, I’m not sure how much value they add anymore.

One of the drugs I was prescribed upon discharge was 200mg of amiodarone. This drug disrupts electrical impulses to control heartbeats. I had afib post-surgery, which is pretty common, and my cardiologist gave me an amiodarone drip to regulate my pulse. However, I read that once the heart is beating regularly, further oral prescription of amiodarone doesn’t really do much. What it is though is highlyntoxic and has a ton of side effects. I’ve been throwing up pretty regularly as well as suffering from insomnia, all side effects of the drug.

I called my cardiologist this morning to complain. They just called me back and instructed me to stop taking amiodarone. Yay! Hopefully this will improve my situation.

I had my first follow-up appointment with the surgical nurse today. She did do too much but she did remove the surgical tape that was covering my main chest scar as well as remove some of the scab that formed over the drain holes. I’ve been cleaning around the scar but the tape was super gross. It has three weeks of dirt and grime on it so it had to go. The scar does hurt a bit more than this morning but hopefully it will heal faster now.

I slept in my own bed last night, first time in about two weeks. I did sleep in bed the first day back from the hospital but I was really too weak to climb the stairs consistently. Since then I’ve sat and slept in the family room recliner. It’s pretty comfortable to sit in but not for overnight sleeping for two weeks.

It still hurts to sleep on my back in bed so I have a huge foam wedge. It helps with my chest but messes up my back so no good sleep yet.

My nephrologist scheduled an additional dialysis session today due to my fat feet. We’ve been removing lots of fluids but my legs/feet are persistently swollen (and leaking water). I’ve been here for about two hours and they’ve pulled 2,098 mL out, though they were shooting for 3,000 mL in 2.5 hours. Right now everything is super bright and my sitting blood pressure was 88/60, way too low. They turned the UF part off and I’m probably done for the day. For sure I won’t be able to walk out of here with my low BP so likely another wheelchair ride home.

Here’s the bottom cut used to remove the vein used in my bypass surgery. It has all but disappeared except for the clear fluid that keeps coming out of it. Two nurses have said it’s water coming out of my waterlogged legs/feet. I have to put a bandage over it to avoid getting everything wet and change the dressing every few hours.

I tried splitting a 2500 mL bag of solution into two manual fills but still only got 500 mL of UF total. However, I only let the solution dwell 60 minutes each time and used the same drain bag which was pretty full at the end. I’m trying again right now but will do 1.5 hour dwells and a second drain bag in case I was volume limited last time.

I also noticed a second free connector on the drain bag. If that connects to the cycler solution bags, then I will have a lot more useable solution since I can then use the 6 L solution bags as source for manual fills.

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.