Daily struggles with dialysis > CABG > kidney transplant > fused right ankle > delayed tolerance program
I used the bone stimulation machine last night before dinner, and I did not feel anything this time. After the 30-minute session, my friend who was visiting said that she felt the cast was a bit warmer around the inside ankle. Again, I really hope it is helping my ankle and heel fractures heal faster, and that I am not wasting 30 minutes each day.
Crap. After being lucky for months with a cast on, I finally got a pretty bad itch in/on my right foot. I have been using a long metal chopstick to reach into my cast, mainly to provide a cooling sensation, but also to reach itchy spots. The location feels like it is on the top of the foot, near where it joins to the ankle.
Even though the cast is fairly tight around the foot, as compared to being loose around the calf, I felt like I was able to reach the location with my chopstick from several directions. The front of the cast is open, so my toes are exposed. However, due to neuropathy, I do not feel any effect of the chopstick on my itchy spot. It sucks because it started itching after I fell asleep this morning, and now it is 5:30 am, I cannot fall asleep again.
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Ugh. The itch is making my panic attack symptoms worse. I woke up sweating under the comforter, but I feel really cold on my back and face.
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It is also more difficult to breathe too. I hate this.
I was stuck downstairs so I did not post about getting the bone stimulation machine. Someone from the company delivered the unit at around 11:00 am, at the same time my cousin and his wife showed up to take me to lunch. The unit looks like this:
It is very simple to operate. Basically, you hold down the one large button and it runs for 30 minutes. Afterwards, the unit shuts down, ready for another day. It is portable and powered by a 9-volt battery. The manual has a lot of warnings about not operating electronic nearby, and the possibility of electromagnetic interference (EMI) while the unit is on. I was unable to find out how much power and the frequency of the EM generated.
I waited until around 8:00 pm before using the machine because a friend wanted to come over and see it in action. However, the only indication that it is running is a 30-minute countdown timer. I was told to use it lying down so both my ankle and heel are between the two panels. I thought I felt a bit of warmth while the unit was on but could not really tell due to the cast and neuropathy.
Overall, I am happy the unit was delivered quickly, and I was able to start using it. I am still not 100% convinced on whether it will work but if gently warming my leg with microwaves will increase blood flow, it may help a bit. I am also hoping my surgeons have experienced some prior success with the device since they recommended the therapy. I just feel I need to try anything and everything to prevent the worst-case scenario.
It is only day two and I already cheated. Since I have a scheduled Ukraine call this morning, I decided to climb upstairs last night and sleep in my bedroom. I left a pillow and the queen size comforter, so I was able to sleep normally. The larger and firmer bed felt much better than sleeping on the small soft mattress. It is about 6:00 am and I will likely go back to sleep for a few hours before my call.
For better reference, this is the view from the second floor. I tried to minimize the items I brought downstairs. If I have to have the cast on for a long time, I will likely buy a firmer twin mattress, and start moving more stuff downstairs, including my computer and monitor.
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Panic attack symptoms seem to change often. Right now, I do not have any cold or hot flashes, but I am having a lot more difficulty breathing.
I finally decided to set up a bed downstairs. I slipped on the staircase going down a few days ago but managed to land on my left heel instead of my right. I am still freaked out thinking about what would happen if I landed on my right foot. So, yesterday, with the help of my nieces, my parents set up an old twin bed in the living room. Since they took a bunch of furniture when they moved out, there is a lot of room. The main issue is the twin mattress is a foam mattress from IKEA and it is really soft.
After setting up the bed yesterday, I slept in the living room last night. The lighting situation is not ideal since most of the light comes from the dining room chandelier. I also have a lot of bedroom lights controlled by Alexa, but not so much in the living room. I went to sleep around 1:00 am and slept until 6:30 am without waking up. That is better than most nights in my firm queen bed upstairs.
However, the mattress was too soft. My back was definitely more sore than previous days. I also woke up hot and sweaty. The comforter is very thin, and the thermostat said 71°F so I do not know why I felt so warm. I need to figure out how to adjust the thermostat and fan to make sleeping more comfortable.
As for convenience, I brought down a bunch of stuff from my bedroom, mostly medication and personal hygiene items. I did not bring down any electronics so I may need to climb back up for my Ukraine call in 20 minutes. I guess the jury is still out on whether I sleep here going forward, or go back to using the upstairs bedroom.
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It is 20 minutes later, and I am upstairs in front of my MacBook. I did not receive any info from my Ukranian friend, so I guess they are still having power issues. Our meeting yesterday was cancelled because he had no power in Kyiv, likely due to Russian assholes attacking again.
My next appointment is not until 11:00 am so I am going back to my bedroom to take a nap.
I should have read the email sent by my previous company’s benefits director. I thought she had sent me a sample letter, but she actually sent me a copy of what I would receive in the mail. The letter included the sign-up website and a registration ID. Luckily, she called me directly and went over some things with me today.
The process is confusing. I needed to sign up with a company called WEX Health. From the website, they appear to be another third-party benefits administration company. I think the trend has been to outsource a lot of administrative functions, especially in human resources, in order to save on employee costs. Anyway, I signed up, chose my insurance elections, and set up a recurring ACH to pay for the premiums. Here is what everything cost:
Total is about $616 per month which is extremely cheap for good health insurance. The benefits director suggested I get the Lyra Health Coaching since it was only $1.15/month, but I do not even know what it is for. She also said she would go chase down WEX and downstream providers to get my COBRA paperwork processed as soon as possible so I will not have issues with my medical appointments next week.
I have been struggling physically and mentally for the past two weeks. I do not remember ever being this stressed out, even after the previous ankle surgery, or during the darkest moments of dialysis. I am being overwhelmed by the constant pressure from the ankle cast and possible catastrophic results if my heel bone fracture does not heal.
What I am also struggling with is what to do with all the regret I have. Even though I know it is terrible for my mental health to dwell on the past, I cannot control my thoughts at all. So many “what if” questions that have no answers. What if I did not attend the holiday work party? What if my friend did not go back to the roller skating area after skipping it previously? What if I was not trying to impress my coworkers? What if I just took off the skates after the first fall and not tried to skate back to the bench? What if I went to get an x-ray after rolling my ankle? What if I questioned why we did not follow the 50% weight restriction with the physical therapist? What if?
Then there are the “why” questions, especially as a Christian who believes God is sovereign? I am not trying to shift blame for my stupidity as I am the one that decided to put on the roller skates. But if God is sovereign, then what is the purpose of all this suffering? I had the exact same question after my divorce, after my heart surgery, and during years of dialysis. Why me?
My faith is weak. Occasionally I even question the existence of God. And if He exists, does He care about us personally? If not, then there is no purpose to suffering and life is just random coincidence. All the lyrics from the worship songs I am listening to ask I type this post are meaningless lies. What then?
Being alone makes the mental challenges a thousand times worse. After my parents moved out two years ago, I have been very alone. Now that I am retired and have no more work interactions, it will get worse. I am also very bad at receiving grace from others. I am blessed with close family and friends but I feel like a burden if I need to ask for help. Several friends already admonished me that people care and I need to reach out before I risk hurting myself further. But how?
Despite some of the challenges I mentioned above, I have always thought that I was mentally resilient. Whatever happens in life, I would adapt and keep moving forward. The past six months have shown me a different reality. I am swearing a lot more. I am talking to myself out loud more. I am unable to sleep because my mind is racing with thoughts of regret. I am depressed because all I see going forward is loneliness. What if I am unable to handle life and have a mental breakdown? Will I even know?
What do I do now? I know it is not scientific but my MBTI type is ISTJ so I should make a list:
I think the best advice I have received recently is to have a regular schedule. My default for the past week has been to stay upstairs in my house and languish in bed or in front of a computer watching YouTube videos and Instagram reels. Terrible.
Since finishing my last college degree in 1995, I have never been unemployed. In America, health insurance is typically tied to your job, unless you are over 65 years old, or you are on welfare. By law, I can continue my current health insurance from work, there is a gap nevertheless. So, even though COBRA insurance will retroactively cover me back to June 1st, I technically do not have insurance currently.
From the information I received when I quit, I know it will take a few weeks to even get the COBRA paperwork. However, I did not to be cur off from everything on May 31st. I am running low on prednisone and went online to try and refill the prescription. Instead of seeing my long list of medications, I found nothing. It seems my account was closed, which I understand, but I also lost all the upcoming refills. That means I will need to call my doctors for a new prescription at my local pharmacy. I did confirm with my friend that at her pharmacy, they will refund you the cost of your prescription if you have to pay retail but later have retroactive insurance coverage. Luckily I have lots of medications, other than prednisone. My friend also said that prednisone is super cheap wholesale, like $5 for 100 pills, and she can get some for me. Hopefully this can be resolved before I start running out of more expensive medications.
As for doctor visits, the director of benefits at my prior employer said I need to ask the provider to delay filing the claim, or pay first and get reimbursed when COBRA insurance is active. Unfortunately, I have a lot of appointments scheduled in two weeks. From past experience, something or everything will go wrong and I will need to deal with insurance issues for the next several months. There are pros and cons to single payer insurance in countries like Canada, but not switching health insurance providers all the time seems like a huge positive. I just hope any negative impact is only financial and not physical.
The panic attacks are continuing even though I have a less restrictive cast, and I know this is happening to me. It is a totally weird feeling. I did make an appointment to see my primary care doctor about the symptoms, but I am almost certain I have a panic disorder, hopefully caused by the cast and all the bad news this week.
After considering the symptoms, I managed to check five of them and have question mark on four others. I think some of the ones I marked with a question may be from hypotension or hypoglycemia.
The one that bothered me the most was the combination of sweating and feeling cold. I know the room is warm but if I turn on the fan or A/C, then the cold sensation gets worse until I am shivering, but still sweating. The other symptom is breathing. The chart above says sensation of smothering. I have felt a shortness of breath the entire day today, even though I have been breathing slowly. This really sucks.
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Looking at the solution side, I feel the only one that will help is breathing and I have been doing various methods like 4-7-8 breathing. For the other suggestions, since the cast is always pressuring my leg, it is hard to redirect attention. Walking is out of the question. I know the feelings are harmless but the future unknowns about my heel bone and how long the cast needs to stay on is very stressful.
I can try throwing water on my face.
I was discussing my anxiety symptoms over text with a friend earlier. She asked if I had been exposed to COVID recently since it seems to be going around again. I said I am unsure but not showing any classic COVID symptoms, such as a fever or cough. Just to be safe, I did a rapid test, and it was negative, though the test expired in 2023.
I remember hearing the CDC or other health organization say that the text kits were fine post expiration date. I am pretty sure I did not contract COVID again. That would suck even more.
It is also harder to find data online regarding new cases. A lot of the sites I used to visit are shut down. I did get this from the OC Healthcare Agency.
When my orthopedic surgeon first discussed getting a bone stim machine, he was hesitant about the insurance coverage and timing. I thought he said something about three to four months. However, I have been communicating via text with a sales(?) rep from the bone stim machine company and I just filled out an agreement form. Since my work insurance officially ends today, she wanted to start the process now to avoid any issues from switching to COBRA insurance.
I guess since the machine is covered by insurance, there is some legitimacy. Does insurance cover questionable therapies? I had some acupuncture sessions covered but I do not think it did anything positive. I did find out that since I have not met my insurance deductible, my copay may be around $500. I saw the same machines on sale for around $6,500 so the therapy plan is not cheap.
God I hope this works.
A lot has happened since the last update ten days ago. I hinted at stuff in some more recent posts, but I will summarize here after speaking to both orthopedic surgeons.
For now, we are casting the leg and hope my heel bone will heal on its own. That is the usual treatment for a heel bone fracture. We are also hoping that by not putting weight on the ankle, the ankle joint will regrow some bone. The surgeon ordered a blood test to see if my blood chemistry is conducive to bone growth, and they started the process of getting an EM bone stim machine. A representative from that provider has already called me for insurance approval. I am really hoping this will help and is not a scam.
Obviously, I do not want to lose my leg. I would have the lamest reason for injuring my ankle and amputation. I still have a ton of questions. I did try to ask as many as possible, and I may call or text both surgeons some more for clarity.
So, now I need to wait and pray. I waited three months after the first surgery, and I wonder if I somehow pushed the surgeon to get out of the cast early. This time, I need to be more patient, even if the panic attacks are more frequent and intense.
Another decision I need to make is where should I stay? I am currently still at home and living on both floors. That means several trips up and down the staircase. Going down is easy but climbing up on my knees is tiring. It also discourages me from going to the kitchen and getting food. I have lost seven to eight pounds since getting a cast again. Prepping food is also much harder with crutches or a knee scooter. Other options are putting up a bed in my mostly empty living room and staying downstairs or moving back to my sister’s house. At least there is food available at my sister’s house.
Since I am officially retired, I am just sitting around all day regretting past decisions and asking God, “Why?” I know this is bad for me but like the panic attacks, I seem to have zero control. I was on dialysis for three and a half years and this feels way worse.
Since I see my nephrologist so much, she has sort of become my primary care doctor. She will prescribe medication and appointments even outside of her specialty, which is taking care of my kidneys. Anyway, with the recent cast anxiety issues, my surgeon said to as my primary care doctor for anti-anxiety medication. No problem.
I just called the family practice clinic, and they cannot locate the last doctor I saw there. I have been going to that office for many years but back in 2018 or 2019, my doctor retired. I was then assigned to another family medicine doctor, Dr. Hoa Phan, and I did see her once in November 2020. Since it was during COVID, it was a video call. I even have proof from the Providence MyChart app:
Several months ago, the company that provided my wheelchair after surgery wanted to get authorization from my doctor. I gave them the name above, but they could not reach her. I finally sent them to my surgeon and promptly forgot about it. When I called today to make an appointment, the office staff could not find her name either. I understand she could have quit, but how do historical medical records disappear? Also, why can I see something from an app or web portal and the office cannot? Very weird.
Anyway, I managed to make an appointment in two weeks with another family medicine doctor, the same one that my parents see. My mom really likes him. I just want medication to help me stop freaking out about my cast.
Once again, it looks like I am on the path to the worst-case scenario. Here is a brief history of my health issues:
So here we are. I asked the surgeon what the worst-case scenario and he is blurts out amputation. So, from simply trying to impress my co-worker with my ancient skating skills to the possibility of losing my right foot in one quick fall.
Dear God, why does this keep happening to me?
I finally got a CT scan on my right leg/ankle/foot. It took a long time because the imaging center could not reach my surgeon’s office to get info for insurance approval. Last time, it only took a few days, not two weeks. My surgeon’s office is sometimes very difficult to reach. I had that experience when I tried to get my medical leave approved. Without insurance, the CT scan would cost me about $320.
The scan was very quick. It only took about five minutes. I must be the first patient since the CT machine room was very warm when I walked in. I was expecting the room to be freezing cold since all medical scanning rooms seem to be frigid. However, as the CT machine warmed up and started scanning, the air conditioning kicked in and the room got cold very quickly. I tried to take a photo while lying down but decided to keep my phone in my pocket.
The results will be ready this afternoon and sent to my surgeon. I am hoping and praying that my new condition is not too bad. I also want to ask to wear the airboot instead of getting another total-contact cast. I have been plagued with the symptoms of panic attacks for over a week and I cannot stand it anymore. Even now, after six hours, I am still experiencing the symptoms of the huge 3:00 am attack. Every website says the symptoms should only last up to 30 minutes but nothing has subsided for me yet.
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Here is what the scan looked like on the computer at my surgeon’s office. He could scroll through the layers of the scan.
Following up on my last post about daily panic attacks, I had a very mentally challenging day today. The only event I had on my calendar today was a call to Ukraine but that got cancelled. Then my friend wanted to come visit. I managed to text back an “ok” before falling back to sleep, just to be woken up when the friend arrived at my house. We spent the rest of the day watching animation and Korean movies.
All day, I have been experiencing mini panic attacks and perceived problems breathing. At some point, I decided to get my oximeter, my Apple watch for ECG function, a manual glucometer, and an infrared thermometer. I measured my blood oxygen levels when I had difficulty breathing and checked my heartbeat and rate as well. Since we did not have a stethoscope, my friend put her ear on my back and stomach to see if she could hear fluid in my lungs.
Since my surgeons suggested Charcot foot as the cause of my current issue, I read up about the condition. It seems to be caused by diabetes and high blood pressure, among other things. I did have issues trying to control my blood sugar this past month. Every little bit of carbs I ate would spike my blood sugar, sometimes to over 350, even though I shot a lot of Humalog. Is this just coincidence or three weeks of high blood sugar enough to dislocate my ankle? I felt the physical therapy routing was putting a lot of pressure on the dislocated joint too.
This was followed by the fear that my transplanted kidney was failing due to the acute high blood sugar. I did have plural effusion during dialysis where I had fluid in my chest cavity, causing difficulty breathing when I laid down. However, there were obvious bubbling noises when I exhaled, and I am still peeing a lot which should negate any fluid buildup in the body. I also do not have any edema in my left leg, and my right thigh has been a lot thinner since putting on the cast.
I am at a loss. The main issue right now is the general numbness and feeling of cold/hot/pressure from my right foot. I feel the same things in my left foot but having the right foot encased in a cast makes everything ten times worse. I will go for a CT scan in about six hours, and I hope I can get some clarity.
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It has been slightly over two hours and I feel like crap. I managed to fall asleep for a bit but woke up about ten minutes ago. It is 72°F in my bedroom and 76°F in my office, but I am freezing in both rooms, to the point that I was shivering. The buzzing is worse than ever, and I feel like I cannot breathe, even though my blood oxygen is at 99%. What the fuck is happening to me? It does feel like a panic attack but why?
Panic attacks are sudden periods of intense fear and discomfort that may include palpitations, sweating, chest pain or chest discomfort, shortness of breath, trembling, dizziness, numbness, confusion, or a feeling of impending doom or of losing control. Typically, symptoms reach a peak within ten minutes of onset, and last for roughly 30 minutes, but the duration can vary from seconds to hours. Although they can be extremely frightening and distressing, panic attacks themselves are not physically dangerous.
https://en.wikipedia.org/wiki/Panic_attack
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I just took all the readings I could at home, and there is nothing obviously wrong with me.
However, I am still getting chills where the room temperature is 76°F but my neck and chest area is burning.
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Another ten minutes have passed, and I feel a tiny little bit better. I still have no idea what is happening to me, other than repeated panic attacks triggered by unknown reasons.
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Ahh, I spoke/wrote too soon. It has been only five minutes, and I am getting chills again and now feel either hungry or nauseous. I have been trying to keep my blood sugar under control, so I am eating a lot less and injecting more insulin than usual.
The cast is really bothering me. It has been super difficult to fall asleep, and I am having occasional periods where it is hard to breathe. If I manage to distract myself and not think about my cast, then everything is fine. Sigh.
Some of the anxiety is from not knowing what is happening to my foot. I thought after two surgeries and five months of healing, I was getting better. However, now it looks like I may have Charcot foot, and in the worst-case scenario it may mean amputation. With my terrible health history, I am really worried.
I am just trying to get through each day and each hour. If I try to think too far ahead, the panic attack starts again. I am also having lots of difficulty sleeping. For example, I could not fall asleep until 5:00 am this morning. I was crazy tired, but when I lie down and close my eyes, all I can feel is the numbness in both feet from neuropathy, and all the worst-case scenarios repeating in my head.
I am not sure why, but the new cast is giving me panic attacks and heart palpitations. I think it is some sort of claustrophobia. Also, my general neuropathy is causing all sorts of sensory overload in my right foot.
One thing I did notice today was the cast is a lot looser on top. Usually, my leg swells up during the day because I am not propping them up. The above photo was right after I got the cast. My surgeon said my leg/foot was swollen from the dislocated ankle. Overnight, the swelling went down, and the cast was loose. I took the photo below during my dentist appointment and it was still very loose.
Even now, after an entire day of sitting and standing, the top of the cast is somewhat loose. I am hoping that the cast and not putting weight on my foot has reduced the dislocation and lessened the swelling. Hopefully.
I still do not have any idea how long the cast will stay on. I know this one will come off next Wednesday during my next appointment, but I am sure my surgeon will order another one put on.
I hate it.
I started a post this morning about being called into the orthopedic surgeon’s office. Well, the news is worse than I expected. I should not be surprised because the worst always happens to me.
Here are some x-rays of my foot:
From top left to bottom, the dates are:
You can see clearly that my ankle is dislocating downwards in the front. There is a growing hole right before you get to the toe bones. The problem was apparent on the May 13th x-ray, but much more obvious today. The other ankle surgeon at the office, a church friend, said that the bone is softer/weaker due to Charcot Foot, and usually that causes dislocations, fractures, and bone disintegration. By giving me another non-weight bearing cast, they hope to stabilize the ankle, and have it try to heal on its own.
Based on my luck so far, that is not likely. I will probably need more surgeries, including external fixators on the foot/ankle again. In the meantime, we are still waiting for another CT scan to get more clarity on what is happening.
Why does all this shit keep happening to me?
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In case you do not know what external fixators are, they are exactly what the name says: external hardware to fix broken bones in place. Here is what I got last time.
I made a post last week about needing a CT scan on my ankle regarding missing bone material. During the appointment, my orthopedic surgeon said not to worry about it, and we will figure out what is happening after the CT scan. I went directly to the imaging clinic to make an appointment, which is currently scheduled for next Tuesday.
Well, the surgeon’s office just called asking about the CT scan. I let them know about the appointment I already made and mentioned that the time can move up my insurance gives approval sooner. The caller then said that my surgeon said we should not wait, and we should get the scan as soon as possible.
Ugh, should I start worrying now? Also, there used to be a large incision from the surgery at the bottom of my foot. It seemed to heal well, but now the spot seems to have caved in a bit. Not sure if that is worrisome as well.
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The surgeon’s office called again and now he wants to see me ASAP. I originally had lunch scheduled but I cancelled that so I can go into his office at 11:15 am. Also, it was a blister that formed at the incision point and it popped yesterday. I was wearing a black compression sock all day so it was not visible on the sock. However, I just checked the sock and there is definitely signs that there was fluid and there is a lot of dried residue on the sock.
Ugh. Why is everything so difficult?
Life with chronic diseases 