This is the second time I’ve been waiting for a callback. I got an ultrasound on my fistula last week and the surgeon was supposed to review it and let me know if there’s anything he can do to fix my fistula. Since then, my dialysis nurse was able to stick me successfully on Thursday, and got one in Saturday.
Interestingly, the same surgeon put in my PD catheter. The surgery was fine and the wound healed great but I think the placement was so so inside the abdomen so I didn’t drain well when lying down on my back. The PD nurse said the same vascular surgeon did good work, but is kind of an arrogant prick.
Sigh. I was going to call the surgeon’s office today but got busy with work. When I finally looked at the clock, it was past 4:30 pm. I’m more of a procrastinator so I usually wait a few days before calling but I know the dialysis nurse will bother me about it tomorrow.
I didn’t actually see the surgeon. Today was just an ultrasound of my arm. The tech was really nice and we were done in <15 minutes. She said my fistula looks normal but there were spots where the blood vessel narrows, probably causing higher flow pressures and pissing off the dialysis machine. She will show the results to the surgeon and they will let me know what he wants to do, if anything.
Right now is that awkward period where I don’t know if a donor transplant is coming soon, or never. If UCLA accepted by sister, then I can tell the dialysis center and my nephrologist to use the chest catheter until the transplant happens. But without knowing UCLA’s decision, I have to move on like the transplant is not happening, and I may need the fistula for five years or even longer.
I had an in-office appointment with the doctor that performed my cardiac ablation procedure back in early June. To get to the office, I had to answer questions about symptoms with one person, then get temperature screened by another person, and line up for the elevator since it only takes four people at a time. It was like visiting a maximum security facility or something. This COVID=19 pandemic has drastically changed our lives.
The nurse did an EKG measurement and the doctor said everything was normal, except that my pulse is a bit slow. When I went in last time, it was at 120-130; now it’s in the low 50’s. He also stopped the anti-arrhythmia medication I was taking so one less pill. Yay!
==========
Here is my year-to-date resting heart rate as recorded by my Fitbit.
YTD Resting Heart rate
It started in the 60’s after heart surgery but slowed to the mid-50’s when I started taking Terbinafine, which can react with Metoprolol and cause a slower heart rate. The increase in April was from the initial a-fib, which was not fixed by cardioversion. The huge spike in May was the a-fib re-occurrence and waiting for the cardiac ablation procedure on June 5th. It has steadily dropped since then to the low 50’s. Here is this weeks heart rate readings; the gaps are when I was charging the Fitbit.
I feel like I’m losing control. I’m sitting in dialysis and everyone that came in at the same time this morning are done except me. At 4 hours, I think I’m here the longest. The nurse is also harassing me to call the vascular surgeon about my fistula which means more surgery. Without a donor in the pipeline, there is no way out of my nightmare.
It’s been about 12 hours since I woke up from surgery and heart rate has been pretty stable. Of courses, it was like this after the cardioversion and that eventually failed. Here is the Fitbit tracker data:
The big gap Sunday to Monday is when the tracker was charging. The big gap today was because I left the tracker at home during the hospital visit.
I’m here bright and early for my cardiac ablation procedure. It’s freezing in the lobby. Due to my insomnia, I didn’t sleep at all last night so I’m really tired right now. Maybe I can get some sleep while under general anesthesia.
==========
Just checked in. All the forms and brochures say St. Joseph Health. They had some issues with my insurance (again). Hopefully they were able to flip Medicare to primary. Now I’m waiting for the Cath Lab to open at 6:00 am.
===========
I’m in the Cath Lab pre-op area. I’m in my gown and I had my chest and groin shaved. Even though it was an electric razor, it felt dull. The also had some issues trying to get an IV in but got it on the third try.
Wow… clusterf*ck. Doctor didn’t know about my heparin allergy so he was about to call off the procedure. Then he decided to take a gamble and just do right side of heart since thorasic surgeon usually does left side during bypass surgery. Right side atrial flutter ablation doesn’t need heparin.
==========
I guess it worked. It’s about 9:30 am and I’m back in the pre-op/post-op room. Heartbeat is sinus at ~60 bpm and he didn’t shock me. Hopefully this lasts longer than 5 days.
==========
I guess they used some heavy duty anesthesia since they keep telling me not to sit up. My back is killing me. It’s almost noon now and a nurse brought me some lunch. It’s basically a turkey sandwich and chicken noodle soup.
Ugh. They gave me a “cardio” lunch and it tastes terrible. That and my throat hurts from the intubation tube during surgery. Nurse came by to rush me so she can removey sutures, which means going home soon.
==========
Huh. No sutures found. Nurse was a bit puzzled. Anyways, going home in an hour hopefully.
My heartrate has been pretty steady at 53-60 bpm post procedure. Surprisingly, my blood pressure is a lot lower too. I didn’t take any hypertension medications this morning and my sitting blood pressure is “normal”; the last reading was 123/73/55. A month ago, I was into the 180s with three medications. Weird.
The big gap yesterday (Monday) was the actual procedure. I left the Fitbit at home. The spoke last night was my attempt at walking. The line is pretty flat.
I couldn’t sleep at all this morning. Between anxiety about the cardioversion procedure and chest pain/pressure, there was no way I was going to fall asleep. By staying up, I noticed that my heartbeat was pretty regular at 61 bpm since midnight. When 8:00 am rolled around, I called the cardiologist office to ask what I should do. The receptionist took a message and said my cardiologist would call me back. Actually, during the call, my a-fib started up again. Dang it.
I ended up going to the hospital at 9:30 am as scheduled. My sister dropped me off since they were not allowing visitors for outpatient procedures. Check-in was pretty efficient; they came out with completed paperwork so I didn’t have to talk to the admitting person for very long. On the way back to pre-op, I saw my nephrologist doing rounds at the hospital. She was surprised to see me. I thought I was a bad sign I’m recognizing random doctors walking around in a hospital.
Pre-op room. They ended up doing everything in that room.
The first thing they did was to get a swab for a COVID-19 test. I just had an antibody test done Friday but this was the antigen test so the nurse crammed a swab way up my nose until it felt like she was digging out some brain matter. Ouch! Thankfully it came back negative. They also drew blood for labs. Since I have a fistula in my right arm, they were limited to the left arm only. The first nurse managed to draw enough blood but took several tries. Then she tried to put in an IV but failed so another nurse came and did it after several tries. Later they said my blood sample clogged and they needed to draw more blood. The IV seemed to be one way (in only) so three nurses tried 10+ times to put in a butterfly needle but failed. My left arm was covered with gauze and bandages. Finally they called the lab for a real phlebotomist. With about 15 minutes prior to the procedure, my cardiologist showed up and the nurse said labs weren’t done because they could not draw blood. The cardiologist said, “I saw the results at my office.” Turned out he original draw was fine. I even had the results on my patient portal app. I got poked those 10+ times for nothing.
IV port
Anyway, it was pretty smooth after that. Cardiologist said she was going to set the machine at 150 Joules; not sure if that’s a lot or not but seems to be similar to a defibrillator. The anesthesiologist came and put me to sleep at around 1:00 pm and I woke up right before 2:00 pm in the post-op recovery room. The nurses there gave me some juice, crackers, and peanut butter since I haven’t eaten in 12+ hours. My sister picked me up at ~2:30 pm so I was at the hospital for a total of six hours. I went home and took several naps, probably due to the anesthesia, and heartbeat has been fine so far.
Negative!
My cardiologist also stopped my Metoprolol medication so hopefully the Multaq can maintain the steady heartbeat.
I had an appointment with the vascular surgeon that put in my fistula today. Last time I went and saw him, I had to wait over an hour. Today, the entire waiting room was packed with patients but they called me in while I was still signing in. I guess my appointment is super brief so they wanted to get me out of the way. The surgeon saw me after only two minutes and said the fistula may be ready for use. He then got a market to trace out the vein’s route through my arm so the dialysis techs know where to poke. I think I’m supposed to try using it this Thursday.
Poke here
The vein splits into two further up the forearm so I’m supposed to tell the techs to use the portion between the small scar to where the vein splits. The tech told me that they would use only one needle first, which will further mature the fistula. The vascular surgeon also said that he will remove the chest catheter in his office when the fistula is fully matured. For my first chest catheter, I had to go to the main hospital to get it removed.
I thought it would be several more weeks until we starting using the fistula. The surgeon did say if the techs couldn’t get the fistula to work, we need to wait several more weeks. I’m afraid that by using it too early, they will damage it and I will need another surgery to fix it.
I saw another patient’s arm today while the technician was hooking him up to the dialysis machine. It’s even uglier and scarier looking than what I saw last week. He had several huge purple lumps the size of golf balls in his arm. The tech would poke the needles right into the middle of it. Meanwhile, one of the nephrologist checked out my new fistula and said it’s almost ready. Again, I hope that it won’t blow up at first use. Maybe the fistulas I’ve seen are super old and new ones aren’t that freaky looking.
I was going to place a picture here but they’re all too scary looking. Just Google “dialysis fistula” and click on images.
It’s been 4+ months since the heart surgery. I was recovering fairly quickly in the first few months but everything has been about the same during the last several weeks. I still cannot sleep on my left side, even a little bit. When I do, it would hurt to breathe. Prior to the fistula surgery, I could sleep on my right side but the dialysis nurses told me to avoid sleeping on that side in case I put too much pressure on the fistula. It’s also hard to avoid the whooshing sound in my forearm when I sleep on my right side. That leaves sleeping on my back which I don’t really like. The adjustable bed helps a little but sometimes it’s still hard to breathe while sleeping on my back.
Also, it’s still very painful to cough or sneeze. That part is a bit better than before but I thought it would stop hurting at some point. I guess we’re not there yet.
I had an appointment this afternoon with the vascular surgeon that put in my fistula. It was for the two week post surgery follow-up. First the physician assistant removed some suture knots from the fistula incision and staples from my abdomen. There were three staples; I thought there was only one so it was a surprise that he kept pulling them out. The surgeon then came in and looked over the various incisions and was pretty satisfied. He was a bit concerned that there is a lump in my abdomen at one of the incision sites so I’m going back again in three weeks.
The whooshing sound is getting louder in my wrist. Everyone said it’s normal but it’s still freaky, especially at night when I sleep to my right side and my wrist ends up next to my ear. Also, if you put a finger on the incision, you can feel a pretty distinct buzzing as the blood flows through the vein right under the skin. Ugh, I wish I didn’t have to get this thing put in.
It’s been almost two weeks since the surgery. I still keep a bandage over the incision even though it has stopped bleeding for a few days. I showed my arm to the nephrologist today during dialysis. He put his fingers on the bandage and gave a nod of approval. Evidently you can feel the blood rushing by in the newly connected vein. You can definitely hear the blood flowing; it makes a loud whooshing sound.
I don’t know how long it takes for the incision to heal. There is still sutures in the incision; I won’t get that removed until next week. Meanwhile, the area is still pretty swollen and looks pretty ugly.
My right forearm
I don’t know what the second small cut is for. I’m pretty sure the incision will eventually close up and heal but I’m a bit anxious about the actual fistula. I’ve seen many of them at the dialysis clinic and they are all really gross looking. I guess it depends on the age of the fistula but a lot of them are huge purple-ish bumps on the arm. An old Chinese lady was bleeding profusely from her arm after dialysis even though she sat and put pressure on the fistula for 15 minutes. Not looking forward to all this.
Sitting in dialysis today, my left leg suddenly started hurting. To lessen pressure on my lower back, I usually sit upright in the dialysis chair. Most patients either have their legs up or sit fully reclined since that raises their blood pressure and lessens the chance of falling out of the chair. When I raised my legs near the end of the session, there was a shooting pain from the left heel up to the back of the knee. Since I get nerve pain occasionally from peripheral neurophy, it wasn’t anything to worry about at the time. The pain subsided a bit until I tried to get up and walk. Then the pain came back. Unlike my normal nerve pain that comes intermittently, this was pretty constant. However, I was able to limp along and it seemed to get better the more I walked.
Fast forward until now. The pain was present most of the day but worse when I straighten out my leg. I had two medical appointments this afternoon and when I got home, I tried to take a nap. I then noticed that the numbness in both legs is a lot worse. Since I have so many medical issues, I don’t know if this is from acupuncture, side effect of medication, more neuropathy, or deep vein thrombosis (DVT); the surface vein in my left leg was removed for heart bypass surgery.
Worse, my dad needed to go to the ER right about now. He hasn’t been able to urinate all day even though he feels like he needs to go. I volunteered to drive them to the ER but my mom won’t let me due to my leg pain. My sister was out of the house so they took an Uber to the ER. Wait… if I can’t drive to the ER, shouldn’t I go to the ER and have my leg checked out? If the pain numbness and pain doesn’t subside soon, I may need to go to the ER.
==========
It’s been about four hours since I posted the above and the pain in my leg is mostly gone. The more intense numbness is still there but that seemed to be the trend lately anyway. I took some regular Tylenol too so hopefully it’s not just the drugs masking the pain.
My dad is back from the ER. They had to insert a foley catheter to relieve the pressure. It was likely an enlarged prostate causing the issue.
My right arm is quite sore. I just changed the dressing again an hour ago and there was only a little bit of blood on the bandage. The incision appears to have stopped bleeding but looks pretty ugly. You can still see sutures and the cut has not completely closed up. There are plenty of sensitive spots along the incision as well. I just took some Tylenol but was tempted to break into my stash of Tylenol-Codeine. I tried to wipe some of the dried blood away with alcohol pads but the pressure was somewhat painful and I was afraid of causing the incision to bleed again.
The two surgical sites on my abdomen are doing better. The catheter exit site is still bleeding a bit; each time I change the bandage, there is some blood on it. The other incision has some sutures and was a bit swollen and bulging out before, though it looks better now. I guess it’s good that I’m seeing the surgeon tomorrow; I don’t remember this many issues when the PD catheter was put in.
I’m using Telfa 2132 non-adhesive dressing and 3M 2″ Micropore Tape to cover the surgery site on my right arm. I used cotton gauze before and it felt like it was going to stick to the opening. It’s also quite a challenge trying to apply the dressing using only my left hand.
The surgical site on my right arm for the fistula was still bleeding this morning. I removed the bandage from last night and it was soaked with blood again, and the surgical tape had a congealed layer of blood under it. There were two places in the incision that was still oozing blood. I replaced the bandage with a non-adhesive dressing and taped it down. That was this morning. I just replaced the bandage again. There was still some blood but it’s much less, though it’s only been about four hours. It does look like the bleeding has stopped.
I called the vascular surgeon’s office to make a follow-up appointment. Initially the appointment was set for two weeks from now but I also explained that I’m still bleeding. Later, the office called me back and said the surgeon wanted to see me tomorrow. I hope this is routine and nothing serious.
It’s 4:13 am Monday morning and I haven’t slept at all. I went to be around 11:30 pm and basically watched YouTube for five hours. I would try to sleep between videos to no avail.
My right arm was wrapped up pretty tightly with a compression bandage all afternoon and evening. Around 7:00 pm it appears the bleeding has stopped. There is still a compression bandage on the incision site but not as tight. However, there’s pain in both my arm and my abdominal surgery sites. I did get the prescription for Tylenol + Codeine but I’m still just taking regular Tylenol. In addition, my mom has a prescription for Hydrocodone and my dentist gave me a prescription for Vicodin. I also have some leftover Percoset from my heart bypass surgery. That’s a lot of opioid painkillers I’m trying to avoid taking.
Anyway, the post surgery pain and more intense neuropathy in my feet is making sleep very difficult. I’ve already decided not to return to work today (Monday) since I’m still bleeding from a few surgery sites. I’m not going to cardiac rehab either so I have nothing scheduled other than a phone call with my insurance patient advocate.. Maybe it will be a day of naps..
I’m supposed to removed the bandage covering the incision in my arm right about now. There was a small dot of blood on the bandage yesterday and this morning, which seemed normal. I wore a long sleeve jacket today so I just looked at the bandage again and it’s soaked with blood. I think I’m supposed to leave it open but now I have to figure out how to cover it again. It also hurts a bit.
Yesterday (left) vs. Today (right)
I read the incision is only about an inch and a half so hopefully my 2″ x 3.75″ bandage can cover it without additional tape. I don’t have the large clear adhesive sheet they used to cover the gauze. I though I had a lot of bandages; if I need to replace them multiple times a day, I may run out soon.
==========
There is some surgical tape underneath the gauze and blood is oozing out the side of the tape. I held some gauze against the tape but blood is still seeping out slowly. I then taped some gauze against the incision; hopefully this will stop the bleeding soon so I can put a new bandage on it. It actually hurts quite a bit when I press on the surgical tape.
I didn’t do anything with my right arm this morning other then type and move the mouse on my computer. That should be well within the limitations in the discharge papers, which was “don’t lift anything over 5 lbs. for two weeks.”
==========
It’s now bleeding through the fresh gauze I put over the incision. I think typing is flexing the muscles in my forearm and making the bleeding worse. I’ll take a break from blogging for now.
It’s been two days since the recent surgery. I did fill my prescription for Tylenol-Codeine but haven’t taken any pills yet. The pain is not too bad and I’ve just been taking regular Tylenol.
The hospital discharge instructions also said to replace the dressing on the PD exit site daily with fresh bandage. There was quit a bit of blood/fluids on the original gauze, and I’ve had to replace the bandage four times already, though the fluid leakage is getting better. There are two more bandages that I’m supposed to remove today (48 hours after surgery). Not sure if I need to replace the bandages or leave them open.
Due to doing peritoneal dialysis at home for several months, I have a lot of medical supplies. I’m using up the rest of my Telfa island bandage. If I run out, I still have boxes of gauze and medical tape too.
One of my good friends is a doctor and he runs the family medicine clinic at a major public hospital. He’s not my doctor so I try to avoid asking him about medical issues but sometimes it’s convenient to ask a quick question to someone you trust. I did ask him about the keloid growth on my heart bypass surgery scar and he texted this product to me.
I found it on Amazon for about $20 for a 5″ x 6″ sheet. You’re supposed to cut it to size and stick on your scar for about four months. Twice a day you need to remove it and wash it with soap and water. There are lots of similar products but we’ll try this one first.
Life with chronic diseases 