All kidding aside. Mayo. Probably the most respected, if not, top healthcare organization on the planet. When the wife and I left in a scramble to get me to Minnesota, I frantically clicked the “Request an Appointment” button in my Mayo app. The pain in my face was mounting, returning. As I sat at my computer, I mapped out in-network hospitals in the event another episode hit me.
As I waited last week, it was static silence. Then an email came across for intake. I filled out everything I possibly could and submitted it in hopes that it would gain some sort of attention. I then started to get responses from Mayo through the app, I sent over some information, but got a call later saying that they needed more information. So I VPN’d into home, and started downloading “John Medical” in its entirety to my laptop. It took a solid 50 minutes to transfer, but I wanted to make sure I just got everything in the event internet went down or whatever. It was only 700MB.
As I sat there watching stuff transfer it dawned on me, that this has been going on now for 3 years. March marks the official 3 years. No I have not been having fun, nor has time flied. This has been a fucking shitshow.
As I started to go through the data, it was a deafening reminder of what I’ve gone through. The wins, the losses. The struggle. Survival. Hope. From my conversation with the nurse from Infectious Disease, they needed to see more documentation that a visit was warranted. So I gave them everything from 2019 till current. Surgeries. Immune stuff. Almost everything. It was about 190 pages. Since they still abide by HIPPA, I had to fax everything over, $30 later, I made sure everything I faxed was confirmed received. When the last documents were confirmed, I said to myself “I hope that’s enough”. About a day later, I got a call back from the same lady, with some awesome news. I got an appointment to see infectious disease at Mayo again. It was in a week, I didn’t give a fuck. I managed to get some sort of hope that maybe this could be the end. The end of the pain, suffering, and constant ER visits.
Between then and now, I’ll be honest. This pain has been something else. It will come and go, ebb and flow, and just go through the roof. Feeling the shit in my face, and under my tongue is just a constant reminder that there’s something there. It fucking hurts. It feels disgusting. My sinuses have been on literal fucking fire. The brownish / bloody shit keeps coming out. The sinus rinse that I have does help. You may have seen the commercials on tv when you couldn’t sleep and it’s 3am. The neti pot ones. The one where people were tipped over pouring stuff into their nose. I remember watching those and just saying to myself “who the fuck would do that?” Got an answer for that one. When I got to my uncles the pain started to subside. I think that’s mostly because of the Clindamycin I started taking. I wasn’t needing morphine to curb the pain. I actually went 3 days without, but the pain came back and hit hard. The red bumps on my face keep flaring. I have no fucking clue what this is.
My anxiety on Tuesday was through the roof. I’ll be honest. It’s been a very, long, hard 3 years. Chasing down the unrelenting infection I started in 2018 while driving. But I think this was eventually gonna happen whether I provoked it or not. The night before I talked to my friend who works at Mayo. She reassured me that I will definitely get help, but that I need to focus on the now. It’s really hard not to think about how I got here, sitting in this chair, writing this. I led with the initial consultant. To my surprise, he started about by telling me what my history was. I had to fill in a few blanks, answer some yes / no questions, and provide more detail to certain things. We spent over an hour discussing things. He then paused, and started talking about the need to start over. Wipe the slate clean. He did acknowledge CVID as something that is “done”, however he explained that he needs to assemble a team, and start looking deeper. That’s when he told me “I will do my very best to get to the bottom of this for you”.
I was so relieved. Finally. Someone is gonna try. That’s all I want. Someone to try. They call it practicing medicine. Let’s just do that. Instead of just stagnating.
He disappeared for about 10 minutes, when he came back, he setup appointments for the following:
Immunology
Dermatology
Infectious Disease
ENT
Hematology
Labs / MRI of my face / CT of my abdomen
Dermatology
Infectious Disease
ENT
Hematology
Labs / MRI of my face / CT of my abdomen
At this point I couldn’t believe it. He said he would start ordering all the consults and communicate everything. He did say that this may take a few weeks, but I don’t care at this point. I’m here to push this across the finish line. I’ve had my fill of ER visits, doctors, antibiotics, pain meds. I’m tired of playing doctor. I just want off this ride. As we finished, I walked out and thanked him. I am so thankful that Mayo is willing to take a swing at this. Nobody in Colorado can be bothered. As I left he sent me down to the lab for blood work. The usual stuff, CBC/CNP, Immuglobulins, and more. After a brief wait, that was done and I hopped in the Jeep to drive back. Just before I got onto the freeway, Mayo called giving me the appointment info, but in order to do them, I needed a Covid test. Ugh. “Oooooook” I said. Told them I could get it taken care of wherever, but then she said it needs to be Mayo. I turned around, parked, and headed back to get my brain tickled.
After the test, I headed back to my uncles. Exhausting day. As I drove back my phone just started going nuts. Appointments, lab results, etc. as I started to look, the appointments started the next day, until the end of the week. Wow. Of course the first appointment is at 7:45am, ugh, I gotta get up 3 hours before that. It sucks, but if this is what it takes. No problem. When I got back to my uncles, I had time to look in more detail as to what’s to come. To my surprise, the first appointment is Immunology… with the same guy in 2018 whom diagnosed me with CVID. I was so excited to see that name again. Throughout the remainder of the day, it was X-ray, CT, MRI, more labs, and a nursing consult for SCIg. My stomach has gotten so sore from the constant infusions. Every week I rotate between each side. My skin is just starting to hate me.
4am came really fast. I can’t believe I woke up. I was tired. I peeled myself out of bed and got some coffee. I started up the Jeep and got ready to leave. I haven’t been more excited to go to a doctor visit in a long time lol. I’ve been looking forward to this for a very long time. A familiar friend came with, my face has been hurting again. It just burns, it stings, and it’s just pain. As I sat waiting for my appointment, my face just continued to hurt like crazy.
Meeting with the immunologist was awesome. It was nice to see him again. I briefly went over what happened after we met, and the letter he drafted for me. He’s really one of the main reasons I’m still here. As we discussed my current therapy, he agreed that it was appropriate. He also taught me something new with IGM. It’s what your immune system is capable of creating. For me, it doesn’t exist. I’ve always been at 20 or below. From what he said, that IGM is a soft indication of how your body is doing. If treatment needs to be adjusted, etc. it was nice to see my IGG at 1200. I’ve never seen it that high. He then began to talk about the kids. I immediately responded “I’ve had them tested, and made them both aware that they have to test themselves periodically no matter what”. That brought us to the next topic. Genetics. Oh boy. I did tell him about my other uncles Crohns, and my sisters encounter with Guillane Beret. He then though it was ideal that I get testing done to determine “if there is something deeper”. He also wants to give me the shingles vaccine, I replied “Whatever we gotta do”. So hopefully I’ll be able to get a consult with genetics and get more blood work done.
I then asked him the final question. “How can I communicate effectively to other doctors about CVID?” As you have read my blog, or not, my #1 challenge is doctors not understanding my immune deficiency. Having to explain it tirelessly over and over. That’s when I asked him about me not developing fevers, or my WBC’s looking “normal”, yet my lactate is high, and I feel sick. He confirmed without hesitation, that’s because your body doesn’t release interleukin as it should be. My immune response is nonexistent due to my bodies inability to create it’s own antibodies. I felt relieved. I told him that doctors just stare at me like I’m crazy when I tell them that. It’s pretty clear that doctors in general, really have no fucking clue how the human immune system works. When you try telling them, they just get offended. That’s where my frustration is. Why should I the patient have to be telling you what you should have learned in medical school? I’ve had to research CVID, the human immune system, and contributing things. After that he said “it sounds like you really have taken this seriously”. “I have no choice but to”.
He then started ordering 2 more labs. Total complement. This looks at your immune systems “triggering” if I had to simplify it. So hopefully that will uncover more clues as to why I am still struggling with infection. He said that my immunologist in Denver is spot on, and is doing the right things for me in terms of treatment, medication, duration, and just being an awesome doctor. He then indicated that since I am seeing ENT tomorrow, he will personally contact the surgeons and go over what’s been going on with me. As I sat there, my face is on fire. My face just fucking hurts. I’ve been holding out all day, as long as I could. Right after I walked out, I took a morphine. Jesus this hurts.
I’m currently sitting waiting for MRI. I did do CT/XRay, but they are backed up. Once I have something substantive to update I will.
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