Rough Progression and Exhaustion

https://blog.digitallychallenged.net/rough-progression-and-exhaustion/

The last 3 weeks is something I didn’t think would’ve happened. At all. Since the old apartment complex refused to cooperate in helping us relocate, or helping us in any way. Just wanting us to sign a form releasing them from future litigation.

I knew in my gut that was the worst reaction they could’ve done.

Since December 20th, we took keys to the new place and that’s when the real work began. I took on all the coordination efforts, while Anies did all the physical stuff, packing, moving and whatnot.

We only had a short amount of time to get this all done. Since the 5th, when we returned to the old apartment, everyone started to feel like shit. My bloodwork was the easy indicator that there was something wrong. When I evacuated the apartment to my friends house, it only took 3 days to start feeling the difference.

When I got my last IVIg infusion, they only did 20g. Labs were posted yesterday showing that my IgG has fallen below 700, typically when I was getting regular treatments, I would be around 1000-1100. But as time has gone on, I feel more and more worn down. I know that my IgG at this point has probably fallen below 500. Back to the levels I had before I started ig replacement therapy. Constant exhaustion. Constant illness. Sepsis. next Tuesday I am supposed to get my normal 45g dose. I hope it’s the whole thing and not some conservative step up. Soleo called me Friday saying I was only getting 35g, I told her straight up that we are going back to 45g. Period. Heart attack or not, we need to get my immune system back where it belongs.

Secondly. The patient assistance program. Ive been telling Soleo for 4 weeks they need to submit the paperwork so that Pfizer picks up the copays. I get a call from Clarence, whom I already hate, from Soleo telling me that I have to sign up. I immediately told him it’s the speciality pharmacy has to do it, and he wanted to argue. So I said you know what, I’ll just contact the Director at Octapharma and confirm that they have to do it. 2 quick texts, and yup, they have to do it.

So I called Nick & Alyssa at Soleo and told them both to tell Clarence to do his fucking job. That I’m tired of having to deal with the stupidity of Clarence not listening. I also told them that I don’t want Clarence calling me anymore since he clearly has no idea how to do his job.

So come Monday, I’ll call Nick to make sure the patience assistance program is approved and listed on my account. I’m not fucking paying anything for this shit when these programs are there for exactly the purpose of patient assistance. Fuck. To date I’ve paid out at least $40k in medical expenses, and this bleeding needs to stop.

On the ketamine front, I had to yell at the office manager at Klarisana. I’ve still yet to be reimbursed for the ketamine treatments I did from August till October. They roughly owe me about $1500. And they kept giving me the runaround. So I got anthem involved. Anthem confirmed they got the checks, and that they were cashed. Supposedly I was supposed to get a check on 12/18 (before I setup mail forwarding), and that check never came. So I told the practice manager that it’s xtremely frustrating to have to wait 4 months to be reimbursed for treatments I’ve already paid for, and the monies they were given should have been given straight to me. I shouldn’t have to ask for it.

Secondly, on 12/5 I gave Klarisana the paperwork to work with my cardio so I could continue the Ketamine treatments. I haven’t had Ketamine since Oct 25. And I can tell I need it. The PTSD and chronic pain is starting to make me tailspin again. So I had an appointment on 12/28. But of course, they waited 3 days prior to the appoint saying that they haven’t gotten anything from the cardio’s office. I yelled at the practice manager about that too. I should’ve been contacted a week of no response, not 3 days until treatment. I tried calling the cardio’s office, but Chauhan was already on vacation, and the doctor there wouldn’t sign off since he wasn’t my primary provider.

I fucking got 2 doses of ketamine in the hospital 2 days straight before I was discharged. I was fine. I don’t see why they are making such a big deal about all this. But I could tell the practice manager knew where I was coming from, and why my frustration and disgust with how this had been handled is an appropriate response. So again, I have to go without it again. 4 months now.

During my pain management appointment, I just asked Dr. Mcclery if they could just take it over. He said no problem, but only problem is, it’s cash pay only, and I don’t know if I can self submit claims to anthem like I was with Klarisana. Only difference is though, they do IV Ketamine. He didn’t really bat an eye at what Klarisana was griping about.

So I have an appointment next week with Chauhans PA. I just need them to sign this shit off so I can get back on track with pain control. Dilaudid isn’t really doing much anymore. Again. It helps not only with the chronic pain, but also the PTSD I’ve endured over the years with dipshit doctors. Let’s be real, when I got out of the Cardiac ICU, and was placed on the cardiac wing, I got a dose of 30mg IV ketamine, and I tolerated it just fine. The Hospitalist didn’t need to talk to the cardiologist, so I really have no idea why Klarisana is making such a big stink over it. From what I’ve read, there are no contraindications with ketamine and heart stents.

I was supposed to return to work this week, I’m glad I told them I need 2 more weeks. I’m just not ready. My body tells me so. Being exposed to the mold as long as I was, the heart attack, the sinus issues, and getting what was probably the flu last week really wore me down. Along with those past 2 weeks, I haven’t been eating. Whether it’s no appetite, fear of eating the wrong thing(s), or just not wanting to eat. I’m definitely malnourished. However, I am making a point to keep my fluid intake up, whether through water, apple juice, or orange juice, I am definitely getting at least 84oz of fluids daily. Which was much more than I was doing before the heart attack.

Aggie has been busting her literal ass since we signed the lease at the new place. Boxing things, getting things ready to move. I couldn’t be more appreciative of her and all her hard work making sure everything made it here safely. When we took possession of the apartment on the 20th, I also got both Athena and Venus certified as Emotional Support Animals. At least we don’t have to pay pet rent or a deposit for them. Honestly that shit is a joke. Who cares. They are the cleanest, most well behaved cats I’ve seen.

On the 21st I moved from my friends house to the apartment with the cats. With the help of friends, Aggie started running things back and forth until the 27th when the movers were to show up. She had to have moved at least 85% of the apartment herself & with the help of friends. The movers we used were probably the best movers we’ve ever used. They were quick, careful with our stuff, but got everything done within 4 hours. Unfortunately I had to make the judgement call of throwing away our couch, bed, boxspring, and ottoman for fear of contamination. I didn’t want to risk it. I even through out our pillows too. Bedspread. Sheets. Anything that could potentially carry any of the mold with.

During Christmas we both got sick. Most likely the flu. I was throwing some really wild fevers which is weird. Body aches. I just didn’t want to leave bed. At this point we really didn’t have much setup except for the new couch, my desk, our new bed & boxspring. I did dump Comcast finally for fiber to the home. It’s crazy seeing speed tests like this

Comcast has been literally calling me every day for the past week, I just ignored their calls, but I finally caved. I told them to just stop calling me, and that I no longer want their service, and to remove my number, and email from any contact, and I hung up.

As time has gone on, Anies has done an incredible job setting up all the rooms meticulously. She’s such a great organizer. Plus with all this extra room, it is kind of nice.

Every day, our new apartment feels more and more like home. I still am in disbelief that the past 5 years of my life was due to the negligence of where we used to live. Since we’ve moved, the crazy rashes have stopped. The skin crawling feelings have stopped. I don’t wake up constantly to burning eyes, face, sinuses, mouth, and throat. Anies says she’s even feels better overall. The cats, have become our cats again. Playful. Cuddly. Always screaming at us because we never feed them.

I am so grateful that we are all safe. All of us. Instead of waking up hourly due to pain, anxiety, all the aforementioned symptoms, I’m finally sleeping all night. This past week however, my body has been screaming at me to sleep. Rest. I’m listening. During the night I’ll get a solid 8 hours, then when I take meds at 9am, the Valium just helps me sleep yet another 2 hours, and then in the afternoon I’ll take another and get another 2-3 hour nap in. My body is definitely welcoming the extra rest, on top of being out of that fucking biohazard for good.

This week was my final IV medication pickup with infectious disease. Kaufman stuck to her word, and kept me on both the Vancomycin and Ceftriaxone until Jan 11th. On Wednesday though, that was a horrid day. That’s the nursing visit day where I do antibiotics in the morning, and then pull my Huber needle from my port, I then just stand in the shower for 30 minutes. God it feels so good when I’m not accessed, and I don’t have to deal with aqua guards. Those things fucking suck. As I walked in, the usual nurse wasn’t there. “Oh fucking wonderful” I thought as I walked back.

Sat down, the usual ritual of pulling my shirt half off, and placing lidocaine cream on the port spot. It felt weird this time. It felt inflamed. I had Rebecca look at it before I put the cream on, she said it looked a little poofy, but nothing concerning. So I applied the cream and waited 10 minutes.

The nurse was absolutely lost. Had no idea where anything was. So I got up and helped her gather all her supplies. Sterile dressing kit, flushes, lab tubes, the special port dressings I love using. Again. She was just lost. I setup the table with all the supplies, then that’s when the worry set in. She opened the sterile dressing kit, and placed the Huber needle pre-flushed with the syringe still attached into the tray. I immediately told her that none of that is sterile anymore. So I made her get a new needle, and dressing kit. I had to show her how to do it. In the back of my mind I started to tell myself, that she’s never done this before.

After I was numb enough, I put on sterile gloves first and my mask. She tried and kept tainting her gloves. I swear she went through 5 fucking pairs of sterile gloves. My anxiety at this point is through the roof. I almost told her to just let me do it, but I kept my mouth shut, gave her the benefit of the doubt.

She picked up the Huber needle, and you guessed it, she pinched the upper portion as she was about to shove it in the wrong spot. The needle retracted. I told her I’ll get you a new one, prime it, but show you hose to grip the Huber. I call it the claw grip. So you don’t touch the mechanism.

I got it ready for her and she was just immediately ready to stick me. I stopped her. I said, you need to feel for the three guide bubbles that indicate where you place the Huber. You just some for the middle of the 3 dots that form a triangle. It’s kinda easy to hit the mark, because at the same time, you can see the scarring of where the last needle was placed. Just put it there.

She didn’t listen. Didn’t feel. She was irritated with me at this point. She used the chloraprep, and just went for it. She went a 1/2” to the right of my port. Completely missing it. Oh fuck did that hurt. Because it was numb #1, and the needle was where it wasn’t supposed to go. She tried drawing back and got no return. I then told her don’t push the saline if you have no return, again, didn’t listen, she pushes 5mL of saline into my boob and hold fuck did that burn. At this point I yelled “STOP”.

She started to panic and cry. She then said “I’ve never done this before”. I replied “I can tell you’ve never done this, you also don’t listen to patients either”. She cried more. Paula came in and I told her what happened, and told Paula to clean the bathroom in the office and I’ll just do this myself.

I got everything setup in the bathroom, and with the aid of the mirror, I used this as a teaching opportunity for this new nurse. I made her feel. I asked her where I should place the needle. Mark it with a pen. Fuck she was way off again. So I cloraprepped again, felt, and accessed. Got immediate return. I then grabbed the antibiotic disc and placed it between my skin and the Huber, placed the sterile dressing, put on the “pants”, put the secondary tegaderm on and flushed 2x.

I was able to withdrawal 10mL of blood which is what you gotta do to “waste” the blood for good labs. I looked at the order, grabbed a vacutainer, the 3 tubes I needed, and drew my labs. I handed her the 1 special vial for the posaconazole level. Told her she needs to immediately spin it twice, and place it in the freezer. She ran off with it. I put the stickers on the other two vials, and immediately started my vancomycin.

I pulled Paula aside and said that I don’t want her touching me again. Throughout the day, the saline in my oboist was slowly coming out, it just stung. But at least the labs are done. My needle is changed, and I can get the fuck out of there.

I got the lab results this morning

Clearly she didn’t listen. But what’s concerning, is my WBC and inflammation markers were trending downward, now they are going back up.

So this morning I sent 3 messages. 1 to Sarid, 1 to Kaufman, and 1 to Hepworth saying the same thing.

“Team, labs are trending upwards again. I am being compliant with all treatments. The MRI showed issues in my sinuses, as well as my mastoids again. Please setup a conference call by Wednesday to formulate a game plan on how to address these issues. I can’t keep doing this. My mouth and face still hurt. What can we do to permanently stop this?”

And I left it at that. I gave them all their cell numbers and said that I expect an answer no later than Wednesday. Because that’s when I’m supposed to come off the IV antibiotics. I just don’t want to go back to work then I tank again.

This past week has been extremely busy. On Dec 28th, the wife and I were out of the biohazard completely. We didn’t clean up afterwards. We both made it to the leasing office to turn in the keys, mail keys, community fob, and garage opener at 5:58pm. 2 minutes before they closed. The leasing associate wanted our new forwarding address, but I simply told her my attorney will be sending that info over.

I sent the attorney to execute the email, and boom, put out it went. It was written perfectly. Basically said as of 12/28/2023, we are no longer tenants. His letter was so simple, yet powerful. He’s yet to hear any substantive response from them, so I assume their legal “team” is taking over. Which is going to be a train wreck I can’t wait to watch.

My attorney tasked me with compiling a timeline of all medical items from 2022-current. I’m about 90% done, I just need to add in the oral surgeon details, as well as the chiropractor visits I was doing to help with the pain. I also spoke with the attorney that will be taking the personal injury aspect of the case, since this really is 2 different legal issues, tenant issues, and personal injury. My attorney already advised me that they most likely won’t settle the tenant dispute, so if we do not get a substantive answer within a week, then I guess the second letter will go out, which will most likely get a response due to the damages we are seeking. Big numbers make people pay attention.

As for this upcoming week, again, this is the final week for IV antibiotics, but I’ll definitely be put on prophylactic antibiotics along side the posaconazole indefinitely. I’ll be seeing Dr Kaufman on the 11th to discuss next steps. Before my ID visit, I’ll be going to Chauhans office to advocate for my ketamine treatments. I need them. Things are getting harder and harder each day I go without it. The plan was to transition fully to ketamine, and get off of the opiates.

Tuesday will hopefully be my full 45g IVIg dose, which will probably take 6 hours to infuse since my rate was cut way back from what it was. Wednesday I see Dr Courtney to help fill out the STD extension paperwork (tentative return 1/16/2024), and also ask him to write an open letter to support me working from home 100% of the time from the 16th till the end of the month. That way I can try to get my body back up to speed slowly, instead of being loaded into a slingshot. Plus with my iGG being so low, I’ll literally catch anything anyone has in public, so I’ve been masking again.

As for how I’m doing. I’m exhausted all the time. My energy is at an all time low, but I’m resting as much as possible. Over the past 4 weeks, I’ve had to re-write my nutritional intake. When we moved, we pretty much had to throw out all my food. Diet wise the main thing is I cannot except 1500mg of sodium daily. That’s the big one, but at the same time, I have to eat super clean. Nothing processed. Nothing modified. We found a few lean cuisines that are actually heart certified, which they weren’t half bad. But in reality, I’ll have to return to cooking for myself again. That way I know what’s going in my body. I’ve tripled my fluid intake, I’m probably consuming at least 110 fl oz of mostly water and juices (yes coffee too). But I’m much better off nutritionally now Han I was 3 months ago.

Hopefully I can get more answers this week as to why my labs continue to look like crap. I just want this to go to something that’s an acceptable “normal”.

I’ll leave with this, we actually have a good looking living room again!

We still have a few boxes to go, but over the weekend , Anies spent a great deal of time organizing our closet, bedroom, both bathrooms, giving a huge clean down (prior tenants didn’t clean anything). The only room left to tackle will be the guest bedroom.

Thanks for reading, and I’ll try to get another post out again soon. Once the legal stuff is over, I can put the blog back “public” again, but for now, this will have to do.

Talk again soon!