Since the sun was still out and I wasn’t feeling too tired, I decided to go out and walk some more. I think I’m supposed to do an hour of exercise a day eventually. This time, I started the walk using the Fitbit app instead of using the Fitbit itself, so the tracking worked without any issues. I ended up walking for 0.96 miles at a 24’21” pace. That’s about 2.5 miles/hour; not to quick but I was only doing 3 miles/hour before the surgery. That means I can walk a 5k in about 1.5 hours.
I was definitely more tired this time. My legs felt heavy after only a couple hundred feet. All this is prep for the Cardiac Rehab program. UCLA Transplant Center will only clear me for transplant if I pass the program. I’m not sure what passing means. My nephrologist said most of the patients are a lot older and more sick; if they hold everyone to the same goals, I should be able to kick everyone else’s butt… maybe. She even asked if I can accelerate through the program faster since I’m likely much healthier than most patients, excluding the bad kidneys.
I just walked for about 1.15 miles. It’s the longest I’ve walked non-stop since the heart surgery. I would have more specs about the walk except my Fitbit had a brain fart. It stopped tracking after 0.15 miles for some reason. I initiated the “walk/run” using the Fitbit (Charge 2); I think I will go back to starting exercises using the app on the phone. It seems more reliable, and since the Fitbit doesn’t have GPS, it’s relying on the phone anyway.
I did hit that “wall” soon after I started walking. Everything was going fine then I became really tired suddenly. I just kept walking and even though I still felt tired, I was able to walk another mile. I was really tired and sweaty at the end however so I guess that’s good? I’m also wearing compression socks from Wanderlust that I bought for airplane rides. They’re kinda thick so I don’t like wearing them all the time. I can still feel the lumps through the socks so not sure if that will work.
I told my sister right after the surgery that my goal is to run in a 5K soon. I can walk the ~3 miles but not sure I could run that long without walking even before surgery. I downloaded the C25K app and will be starting probably after I complete Cardiac Rehab.
It’s been about three weeks since I stopped taking amiodarone. That drug is supposed to regulate your heartbeat but has a ton of bad side effects. More common are nausea, vomiting, insomnia, numbness in the hands and feet, plus a lot more. Since I thought I was experiencing many of those symptoms, I got my cardiologist to stop the medication. However, the “half-life” of the drug is very long, from weeks to months after you stop taking it. Wikipedia has the half-life at 58 days which is ~2 months.
Since all my weird symptoms started about two weeks after discharge, which is about the time it takes for amiodarone to kick in, I was hoping that stopping the medication will ease the symptoms. After three weeks, I’m eating and sleeping better but can’t tell if that’s part of the regular recovery or the residual drug effects wearing off. My main issue with numbness in my feet have not subsided. I have peripheral nephropathy but don’t remember the numbness being that bad. I read somewhere that if your feet are cold, it makes the numbness worse so I been wrapping my feet with electric blankets. I did get some fluffy slippers from Amazon so hopefully that will help.
Starting this past Monday, I’ve been getting these lumps in my left leg, right where they removed the vein for my heart bypass surgery. The lumps are soft; if you press down, it feels like they’re fluid filled. There is also a small ridge running down where I think the vein was.
The scar at the back of the knee is the upper incision for vein removal. The lumps change in size slightly and do not hurt when I press on them.
I called the cardiac surgery nurse and sent a message to my nephrologist about this during dialysis. My nephrologist was doing rounds at the main hospital next door so she decided to stop by to take a look. The main concern is that it is a blood clot but she thought it didn’t look like one. Typically in the leg you get deep vein thrombosis (DVT) if there is a blockage while my lumps looks like they’re on the surface. Also if there is swelling, DVT will cause the entire lower leg to swell. However, to be safe, she will send in ultrasound orders to two imaging labs and I can go in next week if the lumps get larger.
Later in the afternoon, the cardiac surgery nurse called back. She said that she has seen this before and it’s probably blood pooling in the space where the old vein was. Her suggestion is for me to wear compression socks during the day to push the excess blood back up to the heart. She want me to try for a week then call her back. I have some thick travel compression socks but decided to buy a pair of open-toe sheer socks from Amazon instead. Amazon must think I’m running a clinic with all the medical related items I’ve been ordering lately.
Why do I get this feeling that I’m experiencing all the negative side effects of the surgery and post-surgery medication? Sigh…
I had my surgery on November 14th and was discharged on November 21st. In the discharge materials, there is a brochure called “My Six-Week Care Plan.” Well, Week 6 starts today (December 27th). Here are some of the items listed:
You will be able to resume most normal activities progressively
Check with your surgeon if you participate in strenuous activities
Attend Cardiac Rehab
You may return to work if approved by your doctor
You may travel. Make plans.
Enjoy life to the fullest!
Meanwhile, I still cannot eat and sleep regularly. Again, I really hope that is caused by taking amiodarone for three weeks, though it appears less likely as the weeks go by. I hate to have difficulty eating and sleeping going forward. Also, I don’t think I’ve recovered physically. Cardiac Rehab won’t even schedule me until after 8 weeks. When I go out walking, everything would be fine at first but after 1/3 of a mile, I suddenly become very tired and start breathing hard. That’s pretty weak. Is the heart stressed out from not doing much this past six weeks? Does that mean I need to walk even more or just wait for Cardiac Rehab? Also, I don’t think I can go back to work. My coworker texted me about an issue today and I spent an hour looking into it. That little bit stressed me out; not sure if I can handle going back to work full-time yet.
Finally, I haven’t traveled in over three years. Dialysis makes travel very difficult, no matter if you’re on hemodialysis or peritoneal dialysis.
As I mentioned before, my blood seems to be too thick for the dialysis machines. For two days, I was clogging the tubing and filters, and setting of alarms non-stop. I believe they ended up replacing the dialyzer during dialysis because the previous one was clogged up so back. One option is to inject agatroban into the dialysis machine like they do with heparin but I think tat would be really expensive. Instead, the clinic decided to switch out to a different dialyzer. I thought it was one “standard” filter for everyone but I guess Fresenius makes a lot of different ones. I believe they said I used the different dialyzer at the main hospital.
It’s been two days and the clogging and alarms have stopped. Hopefully it keeps working since I doubt they will spend the money on agatroban for the machine.
I am allergic to heparin. I believe it triggers something called Heparin Induced Thrombocytopenia. This is a bit of a pain in the ass since heparin is used everywhere, from most surgical procedures to preventing the dialysis machines form clogging. At my dialysis clinic, instead of locking my catheter with heparin or injecting it into the dialysis machine, they use argatroban afterwards to prevent my catheter from clogging. At the other dialysis clinic I was at, they don’t have argatroban so they just use saline. My catheter clogged once during the month I was there. Their solution is to drip a stronger anti-coagulant into my catheter whenever it starts clogging.
Argatroban is expensive. I heard the nurses say that one vial is ~$7,000. I guess my insurance is paying for it. What happens after I switch to Medicare? Does Medicare cover such an expensive drug? If not, do I just go without and deal with clogs in the catheter? Maybe that’s another reason to get a fistula.
Cross my fingers but I think the phantom smell symptoms stopped this morning. Last night I was still smelling cigarette smoke everywhere but I have not had any episodes today. It seems like it just suddenly stopped. Was it a sinus infection that healed? Was it related to dental issues? My teeth are still the same mess as it was a few weeks ago. Maybe the heavy rain washed some pollutants out of the air?
I think I’ll stay away from the nasal saline rinse and my bottle of Flonase for now. Hopefully the symptoms don’t return anytime soon.
Ha! So I got called the second time as I was typing the last word in my previous blog post. I thought they were going to call me into the back office but instead, I was called to another window along the wall. There, a nice lady asked me a bunch of questions, updated the computer to indicate that I was an American citizen, and made a photocopy of my passport. Overall, it took less than 5 minutes but with parking and walking in/out of the building, it took us a bit over an hour for the entire visit and $6 for parking. Efficient!
She also said that my Medicare coverage should start on January 1, 2020. That was faster than I was expecting. My company’s insurance will still pay for dialysis for another three months so I’m not sure what Medicare will pay for to justify me paying three months of Part B premiums. Maybe Medicare will take care of some of my co-pay. I always hit my out-of-pocket maximum in January. Just to complicate things, I also maxed out my FHA contributions for this year so another healthcare thing to add to the mix.
When I applied for Medicare this past Monday at the local Social Security office, the agent asked me for my passport. Of course I didn’t have it with me so he told me to come back another day, sign in saying I have an appointment, and they’ll make a copy. I thought 5, 10 minutes tops.
Nope. After checking in at the kiosk, I waited 30 minutes to check in at a window just to tell the guy why I was there. Of course he can’t make/take copies so I need to wait for another guy to call me. There are no numbers so I have no idea how long the wait will be. It’s been 15 minutes already. I just need to show someone my passport and I’ve waited 35 minutes already. Plus parking is $2.00 every 20 minutes so this is a waste of time and it’s costing me money. Arg!
One of my many worries is having a lot less urine output than before. If you are on dialysis, this means everything you drink (and eat to some extent) needs to come out as sweat or UF during dialysis. I saw some of my lab results from before and it looked like 1700 mL to 2100 mL per day of urine output. However, while I was on peritoneal dialysis, that number dropped, especially near the end, to almost nothing. My nephrologist thinks that may be the effect of inadequate clearance while on PD, which increases the toxins in my blood, which may reduce urine output.
I think I mentioned previously that post-surgery, I did not have any urine during the week in the hospital, and also the first two weeks after discharge. Only after the third week was there a trickle. Since then, I thought that I was making more and more urine. A week ago, the dialysis center asked for a 24 hour sample and I think my result was only 50 mL. If I’m improving daily, surely I’m at 100 mL or 200 mL after another week.
I found a small sample cup used for PD and collected urine since 8am yesterday (it’s 1am now). Not quite 24 hour but maybe we can extrapolate. I also bought a few disposable measuring cups to use. So after pouring all the urine I collected into the measuring cup, there was only 50 mL of fluid. Sigh, there was no improvement at all (or slightly if you extrapolate another 7 hours). Add to the fact that I’m not improving as quickly anymore… still can’t eat or sleep regularly, shoulder and neck still hurts, I can’t help but think my recovery has stalled. There’s always this thought, “What if I’m like this forever?”
One thing unique to End Stage Renal Disease (ESRD) is that dialysis treatments and kidney transplants are paid for by Medicare. In 2017, Medicare spent $11.4 billion on dialysis and dialysis centers lose money on Medicare reimbursements. All the profit is from charging patients with commercial insurance a lot more. Medicare pays about $90,000/year for hemodialysis treatment; my work insurance was charged about $250,000/year. Needless to say, insurance companies do not want to pay for dialysis forever so after 33 months, the primary insurance for dialysis shifts to Medicare.
I started hemodialysis in July, 2017 so this is month 30. I was told that I needed to apply for Medicare by the end of this month so that there is no interruption in insurance coverage when my work insurances stops paying in April, 2020. There is a lot of information on how to apply but my dialysis clinic suggest that I apply in person at the local SSA (Social Security Administration) office in case documents or files gets lost. No local number is listed online for Social Security offices so I had to start with the national 800 number.
The first call had a wait time of 45 minutes while my second call had a wait time of 41 minutes to speak to someone. I decided to call earlier at 7am and finally got a wait time of only 21 minutes. After speaking to the agent, I was even more confused since they wanted me to file for disability first. I can still work so I’m not sure I want to pursue that route. After sitting around for six week so far recovering from heart surgery, I’m pretty sure I want to work as long as I can.
Anyway, instead of waiting, I decided to just stop by the local office after dialysis. How bad can it be? The office is on the 5th floor of a high rise office building. Parking is expensive ($2.00 for 20 minutes) and the SSA does not validate. When I arrived, there were probably 100+ people waiting already. I stepped up to a kiosk, entered some personal info, and got a ticket with the number C59. There were 9 windows and various letter/number ticket combination was being served. To my surprise, after only 5 minutes, I was called to a window to provide more info on my visit. Then I was told to wait until someone form the inner office called me. After about 20 minutes, I was called and followed a worker to his cubicle. He helped me fill out the application and I was out of there in about 50 minutes. I still need to go back to show them my proof of citizenship (passport) but I should receive my Medicare card within 30 days.
I still have about six remaining in my FMLA leave unless I get another certification from one of my doctors. At this point, I’m totally not sure what is happening at work. We had just reorganized our department at work and I transitioned my main responsibility for the past three years to another manager. In return, I picked up several new direct reports/positions and was supposed to be responsible for all the software systems in our department. I just transferred in an analyst a few weeks prior to surgery and waiting for a developer to transfer in from our internal software group. I also had a new hire start the Monday after my surgery. I met him during the interview process but have not seen him after he started.
I did review my emails about a week ago but another 100+ came in this week. I think I may have to review weekly and at least read the relevant emails. I probably need to schedule a few 1:1 meetings at work early January, especially with my boss, to discuss plans on returning to work. For sure I need to work part-time on Tuesdays and Thursdays due to dialysis. Maybe I can work one or two more days at our Irvine office and only do the full 3 hour commute the remaining day(s). I think I’ve decided that I need a new start in life after the heart surgery close call, and potential kidney transplant. I haven’t decided what that means career-wise.
So after a week of saline rinsing my nose and spraying Flonase, the phantom smell is stronger than ever. I still think it’s more sinusitis related than something neurological but it’s starting to bother me.
I’ve noticed something weird though. Since it’s so dry at night with both the forced air heating and radiator space heater, I bought a humidifier to increase the humidity in my bedroom. I noticed if I breathe the cool output mist, then the phantom smell disappears. This is true near the humidifier but once I step further away, the smell comes back. I’ve also noticed that if I put on a blue surgical mask, the smell also goes away. If it’s neurological, then the smell should be fairly consistent at all times. So why does the mask and the humidifier block the smell? Is it humidity since I’m breathing in my exhaled breath while wearing a mask? Or are there physical particles in the air triggering an allergy/immune response? Particles that are blocked by the mask or pushed away by the humidifier vent. Maybe by coincidence the concentration of air irritants increased enough to trigger a response the same day I used tap water for a nasal rinse.
As she was hooking me up to the dialysis machine this morning, my nurse mentioned that there was increased resistance in the blood flow in my catheter and may need to go to the hospital for an anti-coagulant drip. My dialysis is complicated by my allergy to heparin. The dialysis center cannot inject heparin into the machine during dialysis to prevent/minimize blood clots.
Similar to Thursday, one of the alarms kept going off about 2.5 hours into dialysis. I think the display said “TMP too high” where TMP is high transmembrane pressure. They tried to fix the problem but ended up replacing the dialyzer filter with a new one.
Happy 100th post (even thought this is #102). I didn’t think I had that much to say but as long as I am receiving dialysis, I’ll try to post something. I will shut down this blog right after my kidney transplant surgery.
Over the past two weeks, I’ve made several calls to both my transplant coordinator and transplant assistant at the UCLA transplant center. The transplant coordinator called me back this morning and answered a lot of questions. I was put on transplant hold after my heart surgery and I wanted to know how to remove the hold. Basically, I can be cleared for transplant again once I complete the cardiac rehabilitation program. I signed up for the one at St. Joseph Hospital and my orientation is on January 16th. I believe the program is 24 days and usually people go 3x per week. If I can keep that up, then I can be done in eight weeks or by mid March. I also need to switch blood thinner medications and get clearance from my cardiologist. With all that, UCLA is targeting to release my hold on April 1st. At that time, they will ask me to see one of their cardiologists to review all my medical files. After that, I think we can finally plan on scheduling the live donor transplant surgery. I spoke to my donor today; he is still gung-ho on proceeding with everything and will try to complete his tests by early March.
This is easily the highest item on my anxiety list. I was afraid that I would be on hold for more than a year but six months seem bearable. I think I still need to get a fistula since there are always delays and everyone says i need to stop using the central line catheter ASAP.
Dialysis is expensive. I believe my insurance pays about $20,000 per month on my in-clinic hemodialysis treatment. Even when I was on peritoneal dialysis, my insurance was being charged ~$400 per day.
After 33 months, my work insurance will stop being the primary payer for dialysis or transplants. Medicare then takes over and my work insurance will pay the out-of-pocket expenses such as prescriptions and the 20% Medicare copay.
I’ve been calling the 800-number for Social Security to set up an in-office visit so I can apply for Medicare. When I finally spoke to someone, they said for ESRD patients, I need to file a form for federal disability. My closest SSA office is fully booked for both in-person and phone appointments so the phone rep left a message for them to call me back with a time. Hopefully someone cancels over the holidays so I can get the application filed. Everything just takes longer with the government.
So five weeks after heart surgery, I’m recovering well but still have a ton of medical issues to deal with:
Left shoulder impingement from surgery
Pressure in chest area when laying down flat or on side
Numbness/tingling in hands and feet that seem more intense than prior to surgery
Phantom smoke smell, possibly from sinus infection with nasal drip
Food tastes different and no appetite which leads to low blood protein
Insomnia from physical and psychological/emotional drivers
Many cavities and several potential root canal procedures
Constipation
Low urine output, hopefully related to blood toxicity while on peritoneal dialysis and will recover
Not sure how may of the items above are post-surgery effects and/or side effects from medications that should eventually wear off. Hopefully these start dropping off the list before more stuff is diagnosed.
Another week has gone by. I think not working has messed me up slightly. It’s hard to remember what day of the week it is. Everyday is about the same. With my insomnia, I struggle to make it to morning. Usually I get some sleep early in the night but then wake up and cannot fall back asleep. For example, I slept from 11:00 pm to about 3:00 am this morning, then I’ve been up for the past 2.5 hours. Next, I have dialysis Tu/Th/Sat which brings me to 1:00 pm. Usually I’m pretty wiped so maybe home for lunch and a nap. Then it’s late afternoon and time for dinner. After dinner, probably a few hours of TV then repeat cycle of trying to sleep again. Arg!
My surgery was on 11/14 and I was discharged from the hospital on 11/21. Counting from the surgery date, I’ve make it five weeks and am staring the sixth week, which means I have seven weeks before returning to work. I probably need to find a day next month to visit work and discuss how I’m going to re-integrate back to work at the beginning of February.
Life with chronic diseases 