A little help for John Z
Our friend, John Zoubek, is presently going through a pretty tough stage in his life. He's been in and out of the hospital many times over the last year, and most recently, he's been in there on an extended basis. He's been put through the wringer actually, to be quite honest.
Many of you (at least in Chicago, where I'm located) might remember him as part of our team at Vision Nightclub for several years, where he and his camera captured so many of the amazing nightlife moments with so many of the world's most amazing electronic music talents that came through those doors. Please see the pictures below -- this is how so many of you likely remember him, or the pictures he used to take...
Starting with a multitude of dental root canals in 2016, there was no found cause for his persisting pain. During that time, he'd regularly be fighting off pneumonia, bronchitis, and upper respiratory infections. Soon to follow were more infections of several varieties, problems swallowing food, skin inflammations, night fevers, cystic acne, and more to come, carrying into 2017.
An unexplained blackout episode caused a fall and an impact that popped several ribs out of their rightful place that took months of physical therapy to heal. Things seemed to be on the mend finally as 2018 rolled around.
Then in March 2018, the night sweats, severe jaw pains, and massive fevers returned. Multiple doctors and many x-rays later, there was still no cause found for all of John's symptoms. His condition now began to degrade, starting with his heart rate racing out of control and regular pain on the left side of his face. A visit to the ER and a CT scan showed nothing. He was released. Then, then next day, he returned to the ER, only to be diagnosed with Bronchitis and released once again.
Another trip to the ER later, he was determined to be septic. He was prescribed more meds and sent on his way. The following week, he had a tooth extracted, due to a faulty root canal that was discovered during one of the scans. This sent his illness back into overdrive, and since then, he has spent nearly countless times in and out of the ER, and having been admitted multiple times, in an effort to stabilize his condition from potentially life-threatening to something less than that.
He's been ruled septic on several different occasions, and has ridden out the storm each time, but each time taking a further toll. This guy has been poked, prodded, medicated, tested, admitted, released, readmitted, rereleased, and has suffered not only painful recurring symptoms many times, but also some really rough side effects from all of the medications. He also has kept a very detailed 25 page medical journal documenting what he's been through.
Now, we could go on discussing the full extent of all of this, but the bottom line is this: his immune system is totally destroyed from all the medications and antibiotics, and he's run out of moves at his current hospitals in Colorado, where he currently resides. He has been accepted to the Mayo Clinic in Minnesota, where we're hopeful that they will make some progress in determining the actual cause(s) of what he's being forced to endure, which is a positive thing. He's hoping to get in there by the end of this week of Friday, October 5th.
However, all of this treatment has come with a price tag. When this is all said and done, it will have cost in the hundreds of thousands of dollars. Fortunately, he's got some good insurance, and much of that is being covered. Unfortunately though, he's still incurring out of pocket costs, and they're really beginning to pile up. Asking for help is something that no one in his position ever wants to do, but sometimes, you don't get a choice in the matter once things reach a certain point. A broken US healthcare system is certainly a contributing factor here also, but that's a bigger picture issue that none of us are going to fix in the short term. Thefocus here is really to see if we can help someone.
John has definitely been a good friend to me (and so many of us) in many ways, and he's always been the type of person who would be generous with anything he had to share. He's a friend in need right now, and he could use a few friends in his corner. If you find it possible to contribute anything in helping keep him from being buried in medical debt, you'd be doing a good deed to someone who would certainly do the same for any of us if the tables were turned.
Please consider helping him in his hour of need. No contribution is too small. And even if you're not in a position to contribute anything monetarily to this effort, please at least keep him in your thoughts and send him some kind words of encouragement. He needs his friends right now. Please help in any way you can.
Kindest regards and much gratitude in advance,
RJ Pickens (John's friend and ringleader in this effort)
Bilateral Turbinate Reduction
Bilaterally Maxillary Antrostomy
Left Total Ethmoidectomy
Left Frontal Sinusotomy
The surgery will take about 3 hours complete, and the recovery from the surgery will be roughly 2 weeks. The method or approach to this surgery will not require the need of a neurosurgeon at this time, and will be done utilizing both an endoscopic approach (through the nose, and back of my throat), and a Frontal Sinus Trephination (drilling a small hole in my left eyebrow). I will have to follow up with another CT in the future to verify that Fred doesn't form into Fred Jr, which would then require the need for a Neurosurgeon to perform a much more invasive procedure to completely remove it.
I am currently awaiting to hear back from the surgery scheduler after both my ENT and Immunologist confer on the best approach to the procedure, such as getting a full dose of IVIg in prior to the procedure. The surgery will be scheduled at Swedish Medial Center, or at Presbyterian St. Luke's for the procedures above, he also has access to Porter, which I respectfully declined having it completed there for previous reasons.
Another astounding comment and finding that my ENT made is that this has most likely the root cause of all of my issues, and that by completing the surgery, that my immune system may recover as it has been focused on the osteoma for so long. The osteoma is most likely the reason why the cysts, teeth, and recurring infections have plagued me for so long. As much as I would love to have that be the root cause of the issues, with my medical history, I am pretty certain that the CVID diagnosis is accurate, and that the IVIg will need to be required for the rest of my life.
Today I feel much better. It's odd for me to say this, but I almost feel like me again. I believe that the IVIg therapy yesterday got my levels up, and I actually have energy. The side effects that I was feeling last night seemed to have gone by the wayside.
Thanks again for everyone's continued support. It all means a lot to me!
We got to the infusion center around 8:15am. I was met by reception, then forwarded to the infusion wing. The nurse that I had was amazing. Very thorough, and answered all of my questions. By 8:45am, my IV was in, and they drew labs for both CRP, and CBC. After that, I was moved into an infusion room. Both my boss, and alternative life partner were there to support me. Without them, I would have had a tough time with the infusion.
At about 9:00am, the infusion started. However, there were some minor changes to my IVIg prescription. They changed my IVIg to Octagam 10% 20g / 200mL to start. The next infusions going forward, I will be receiving Octagam 10% 40g / 400mL. My infusion rate was supposed to be 50 mL /hr, then 60 mL /hr, then to 90mL /hr. I decided that since this was my first infusion, I wanted to go slow, so I asked them to just keep me at 60mL /hr. The chair was really comfortable. I brought snacks and gatorade to keep me motivated.
I didn't have any adverse side effects at start, or during the infusion. Just my arm burning a bit from the IV. At the end, when the pump was done, they blasted me with the rest of the IVIg, wow, that was a rush. I could definitely feel the change in the flow rate. The fatigue the last 30 minutes started to set in. It started with my eyes just being on fire, then evolved to my whole body just aching. The entire time, both my BP/HR was fine, first one was high because I was just anxious. No fevers. So it looks like the Octagam 10% IVIg will be good to go.
The infusion took about 4 hours to complete with a flow rate of 60mL / hr. The subsequent infusions will be upped higher and higher as this progresses. A good target rate for infusion is about 120mL /hr. Which will take infusion times from 8 hours, down to about 4 @ the full dose amount I need.
I met with my immunologist, he's badass. Explained everything in detail. Gave me a few tips / pointers. I will be seeing him again in a month, then after that, I will only need to see him every 3 months going forward. Instead of Monday-Thursday infusions, I decided to move all my infusions to Friday's. That way I have the weekend to fend off the fatigue.
After the infusion, my boss took me to my favorite breakfast place Snooze. Best place ever. I could eat there every day with no regrets.
Thank you to everyone for the continued support!
In parallel I have started a blog which has more detail. You can find it at https://blog.digitallychallenged.net
I have a left frontal osteoma with chronic sinusitis. Both Maxillary and ethmoid sinuses have a pretty bad infection to which they prescribed Doxycycline for a few weeks. From a surgical standpoint, the osteoma, or "Fred" will be removed either via endoscopic sinus surgery or craniotomy. Currently I would be looking at surgery roughly into a May timeframe, so that date is TBD.
Another finding is that I most likely have a CSF leak along the frontal sinus or in my ethmoid skull base. This may require a co-surgeon's assistance with a neurosurgeon. Another finding was a possible left maxillary papilloma which will require a biopsy, and clearing of the margins.
Surgery will most likely include a septoplasty, bilateral turbinate reduction, bilaterally maxillary antrostomy, left total ethmoidectomy, and left frontoal sinusotomy to remove the osteoma. The surgery will take about 2 hours complete, and the recovery from the surgery will be roughly 2 weeks.
She believes most of my issues of balance, blurred vision, seeing stars are mostly due to the above problems, and the surgery should alleviate everything.
I have a followup appointment with my ENT to go more into detail about the upcoming surgery, expectations, procedure, etc next Friday on the 12th.
I also received a call from the infusion center, and my IVIg infusion has been bumped up to this upcoming Monday the 8th at 8:15am at Immunoe. My original infusion was scheduled for the 11th.
Big thanks to my alternative life partner for shuttling me to/from my appointment.
So things are starting to move in the right direction. Thanks again for all the support from everyone. The past few weeks have been pretty tough, however, I am hopeful that this will start to resolve the 10,000 piece puzzle I've been trying to put together for a VERY long time.
For this update I have both good and bad news.
As for the bad:
I had CT/MRI’s done of my sinus and brain. I have a very large tumor growing between my left eye, brain and left forehead. This tumor is pushing into my brain substantially, and is causing a CSF leak. Which would explain the headaches, neck pain, and overall “I don’t feel good”.
I will be meeting on April 1st to officially go over the scans with my ENT’s PA. And potentially schedule surgery. I will 200% need surgery. I will be consulting with my ENT on April 12th @ 10am to see if this can be removed transnasally or endoscopically, or if I will need the assistance of a neurosurgeon to help with the removal of the tumor.
At the same time I also have a pretty major infection within my cheek and ethmoid sinuses.
I met with a new immunologist, and within 10 minutes was overwhelmed by my story and immediately diagnosed me with CVID or Common Variable Immunodeficiency Disorder and wrote my order for IVIg replacement therapy.
I went over the past 20 years of illnesses, the cystic acne, and the recurring cellulitis and septic episodes I had last year on top of all the immune system workup testing that I’ve had done over the past 6 months proving I had CVID, yet UC Health refused to treat me.
I handed over all of my labs, as well as all the consent forms for my new immunologist to draft the letter to Cigna proving I need the IVIg therapy. I should receive my first infusion within 3 weeks, and will be every 3 weeks moving forward, for the rest of my life.
If you would like to read up more on CVID:
Thank you to everyone who continues to support me, it means a lot.