Day 1

The way I look at the amount of shit I’ve had to endure with the severe mishandling of my healthcare over the years, it’s just a lesson that’s hard learned.

A small update to the living issues, the apartment complex came last Tuesday to start the mold remediation. Prior to all of this, I contacted the property to have them investigate into the possibility of the source of the mold. The mold that was found in my sinuses was definitely a big indication of what has been causing my health issues, but as time has gone on this year, Anies hair was starting to fall out. Strange rashes / sores on her face. Weird respiratory problems, where she had to get a rescue inhaler. The cats started to get winded fast when I would play with them. They started to sneeze more and more. They lost a lot of the energy that they once had. So from that perspective, the mold was starting to systemically impact everyone that lived there.

The property has done an amazing job, and has taken this issue seriously. As part of that, they put us up in a hotel until the mold sources can be eradicated from the unit. I am pretty sure they won’t be able to get the mold level’s to safe levels. So to get ahead of things, I had them reserve a different apartment, in a different building. Those people should either be moving out this weekend, or next. Once the apartment has been vacated, I instructed them to NOT do any rehab work. Leave the apartment as-is.

Why?

So that they can do the environmental testing to the apartment as-is, without them hiding it by using Kilz paint, or the usual rip out the carpet. I don’t want them hiding anything that may become a problem later. I will then be able to compare the reports with our current apartment, and the other one to make a decision on what the next steps are here. Thursday, the environmental crew came out, and did a much deeper dive with the environment in the current apartment. Taking samples from every room, vs the 2 samples they took previously. My downstairs neighbor told me that they were back out taking outdoor samples. So with that being said, the property is definitely trying their best to make sure that our living conditions are safe, and liveable. As I was released from the hospital, I met with the property manager and discussed “the future” of how this is going to go.

I told her that they need to establish safe living conditions, whether its the apartment we are in now, or the other apartment. Quarterly environmental testing will now be required, and put into our lease as something the property needs to help with. As silent as this has been, I want to make sure that this problem doesn’t come back, and if it does, we can be more proactive, than reactive. I don’t want to spend my life doing what I’ve been doing for the past 5 years. It’s not sustainable, for me, Anies, or the cats. I want to make sure that everyone is safe. I don’t want our home to be an extreme health hazard. When I talked to Dr. Sarid, he told me that Alternaria is a regional “allergen” that’s treated as such. I am aware that it’s in the outdoor environment, but we need to do whatever it takes to make sure that those hazards aren’t growing in our living space, no matter where we end up. The other thing I mentioned to the property manager is that, if we do end up having to relocate to the other apartment, that they will need to arrange movers, and pay for it, since the health hazard I uncovered clearly has directly contributed to my overall health, not to mention the health of Anies, and our kids (the cats).

Unfortunately with all the damage the infection has caused, the heart attack, my continuing immunodeficiency issues, I will be unable to participate in the usual fashion of helping with the move. Like last time when we moved, we had to hire movers. I couldn’t lift anything. I felt so helpless, but at that time, I didn’t know why. But at that time, I was dealing with the clotting issues. So I really couldn’t help. Now with everything thats happened this year, and the answers I’ve finally gotten this year, I can’t help with moves going forward. I need to make sure I am not harming myself by carrying things. At least for the next 6 months, I have to do the minimal amount of lifting, moving. I have to be very careful with the condition that my heart is in now, on top of the pulmonary embolism they found. It’s very clear my body has been under duress for way too long, but now that I feel this has become Day 1 in a new life, unfortunately same broken body.

Next Wednesday, I will know the status of the environment of our current apartment. Mold is everywhere, but if we can take steps to minimize the exposure to it while we are home, I am completely fine with that. It’s just nice to know going forward, I know what to look for, I know what has been basically slowly killing me.

Again, the property is putting my health #1. They have done everything to ensure that we are currently in a “safe” place. We did move a few small items into the hotel, so it’s just a matter of determining if we need to continue staying at the apartment as they remediate the mold, and wait for the new apartment to be validated as safe, and then make the call to move to the new apartment, or move back into the current one.

I have absolutely all the faith in the property is doing the right thing, but I feel that the current apartment is realistically a lost cause. I’ll always know that the current apartment is completely responsible for where I am at health wise now, I have 0 confidence that it will be “safe enough”. I’ll always be “paranoid” to the fact that the little things that could happen, will be environmentally related. Since the mold has become my kryptonite, I need to ensure that I never come in contact with it for extended periods of time.

Today I guess in a lot of ways is Day 1. From a health perspective, this is the point in time I need to refer back to as this is how bad things got, and I have to remember what this has all done to us. Going forward, our health is now my #1 priority. Also I can use this day as a reference as if I continue to improve, or just like my previous blog posts of “going backwards again”. I am now intune with my body, what it tells me, I know how to listen to it now. Seeing as how the doctors over the years have mishandled / mismanaged / misdiagnosed the primary issues.

My immunologist has been and always will be the best doctor I have. He’s been with me every step of the way. The CVID diagnosis is correct, the MCAS diagnosis is correct. The two treatments I am on are correct. This is life long, I’ve accepted that.

My ENT has helped when he felt it necessary to intervene, this needs to change. He needs to understand my immune disorder is the main driver of any issues that may come up with my sinuses. Now knowing the environmental involvement in this, he cannot just continually write this off as allergies. It’s infection. I’ve always said its infection, but its never been fully perceived that way. He’s helped me in the past, but I think some adjustments need to be made so that he can help optimize my health from a sinus perspective.

As I’ve complained about it before, infectious disease I think at this point has learned that the intentional delays they directly caused, contributed to how I got to where I am at. Since 2020, I’ve tried getting them to pay attention to the growing infection in my face. Being dismissed on several levels. Being called crazy. Being told that I am self-harming myself to just get attention. They couldn’t be more wrong and out of their league. Dr. Eison can kiss my ass. His comments, his stupidity, and ignorance almost killed me. Dr. Kaufman on the other hand, has done what she could, but started to just back away mid summer. She lost the focus that I need her to have to make sure the infection was gone. As I saw her in the hospital, in the ICU, I think everything I told her partner the day prior was conveyed to her, she just needed to see this with her own eyes. This was the wakeup call I think she needed. As I came to their office after release, I could tell the entire staff knew what happened. Them ignoring my labs I sent. Ignoring the fact that the infection is getting worse. Hopefully going forward, this relationship stays the way it is now. I need them to listen to me, and treat me based off of that instead of the “textbook”. That shit doesn’t apply here.

My new cardiologist saved my life. I can easily say that. His clear attention to detail, and sense of urgency is what saved me. But it doesn’t stop there. He would see me at least 3 times a day when I was in the ICU. He was human. He was empathetic. He was focused on what’s most important to me. I’m sure his report is what woke up infectious disease as well. His straight comment of the ongoing infection not being controlled directly contributed to the stress on my heart. Yes, there were clots there, but this is all provoked from the PICC lines. Having IVIg increase the clotting of my blood. I’ll see him in about 2-3 weeks to follow up. Per our last discussion in the ICU, he will need to be apart of the close-knit team of doctors I’ve built up. We will also need to get a Hematologist on board so that my immune therapy, and anti-coagulation can be optimized so that I don’t slide backwards due to the treatments just fighting with each other. I’ll need to be on anti-rejection meds for the next year for the two stents he placed in my heart. I’ll also need to be on cholesterol control, and blood pressure control.

This year has been traumatizing to say the least. But I think after this last lovely stay at resort Swedish, I will be listened to going forward. Especially from an ER perspective. If I show up, they are to help me. Not treat me based off their opinion, they need to treat me based off of my real medical history, and just listen to what I am telling them, and take it as fact. One skill I have acquired from all of this, is how to advocate. How to call out the doctors that are just ignorant. How to get the right attention, when I need it.

Lastly, the Ketamine infusions unfortunately had to get paused due to the sinus surgery. The heart attack just added to the delay. But I did get 2 infusions of ketamine before I left Swedish, so that helps. Klarisana did reach out, and I am back on the schedule. My next Ketamine infusion will be on the 30th of this month. I am totally looking forward to it. It’s not only just for my chronic pain at this point, its also for the PTSD I’ve developed from the past 5 years of doctor ignorance. The therapy does help, it has been life changing in a positive way.

As I looked through my ECG data, since the beginning of 2022, I have ran an ECG daily. During the attack on Monday, I took 2 ECG’s. Just to collect data. But I was so focused at the time with survival, I couldn’t look at what my watch captured. I took a look yesterday when I had some downtime.

You could see my heart was in trouble. But there is a disclaimer using the Apple Watch for heart health, Apple Watch doesn’t detect heart attacks, just Afib. As I looked in shock as how bad it was, curiosity set in immediately. I started looking backwards. The issues started on 11/21, and each day, it slowly got worse. Each day that passed, the ECG’s started to look worse and worse, but I never looked. So going forward, I have to evaluate the daily ECG I take so that I can monitor this closely. Below are the full ECG reads during the attack:

As for my daily schedule, you can clearly see, there is a lot I need to do for the next 6 weeks. Staying on top of my antibiotics, anti-coagulant, cholesterol control, anti-rejection, and blood pressure medications. I cannot miss any dose or that will cause even more issues.