Day 2

Last night was pretty rough. Sleeping has been quite challenging since I was hospitalized. My watch / health app keeps reminding me that I am not getting enough sleep. You definitely cannot sleep while admitted to the hospital. Constant people coming in & out of your room, especially the ICU. So you just get broken sleep. Sleep between rounds, IV antibiotics being ran, pills needing to be swallowed. The phlebotomists coming in to steal my blood constantly.

Honestly, its fine. What happened Monday was both eye opening, and life changing. It’s nice to actually have answers to everything. I do mean everything, why I’ve been so sick. Why I continue to keep battling this mysterious illness. Why I was so exhausted all the time, by just simply walking 20 feet. My body feeling like it was at Defcon 1 since the beginning of the year. It truly is a relief, both mentally and physically.

It’s also a large relief on Anies. She’s been such an amazing wife, and best friend. She never gave up. Neither did I. She’s been so supportive throughout this entire ordeal. Taking time off of work to come to Dr visits. Coming home to make sure I was ok over lunch. Always being present as much as she could. I couldn’t have asked for anything more.

As for the 2nd day away from the hospital, I am really tired. Sore. The insertion site where the catheter was inserted is extremely bruised. He wasn’t gentile by any means, but at the same time, he didn’t have the luxury of time. As my triponin was rising, it was just a matter of time till my heart gave up. He said the only thing that kept me going was the flow of blood through my heart. Had I went another day where my heart was being starved of its blood supply, the outcome would have been much different. I am truly the idiot for just not calling 911 during the attack. Next time, I will not mess around.

Last night from a sleep perspective, not only was it my port needle being too long, definitely need a 3/4th’s inch needle. It’s super uncomfortable. I can’t use my stomach to sleep, thats for sure. Hopefully tomorrow, I’ll give infectious disease a call and see if they got the shorter needles in. I also need more heparin lock syringes. Need to make sure my port stays open, and doesn’t get clogged up. The next reason why my sleep was so broken, is having to take the Vancomycin every 8 hours, but an hour prior to the infusion, I need to remove it from the fridge. I’m doing my Vancomycin as we speak.

It takes about 120 minutes for it to fully go in, so I’ll probably get to sleep around 11pm or so tonight, but then I need to get back up at 5am to get the Vancomycin out for the next dose. Again, this doesn’t bother me one bit. This is the antibiotic I’ve been begging doctors for since 2018. Just getting sparse doses here and there during ER visits, or pre-med antibiotics for procedures. Hopefully 6 weeks of 1g every 8 hours will finally dump this infection off of the cliff for good.

The next reason why I can’t really get a good nights sleep, is you guessed it. PTSD. Anxiety. This year has absolutely not been kind, at all. It’s just been one thing after another, but it’s all real. It’s not made up. Right as I start to dose off, I’ll feel my heart flutter, and it wakes me right back up. Flashing back to last Monday morning. So in a way, I am hypersensitive to anything lung, or heart related. I have to be for right now. I’m not in the clear yet. Anything could happen. The constant stress, and worry I’ve had to endure has definitely found its home in my shoulders, back, and neck. Everything is still tight. It is starting to relax, but immediately tenses back up the minute I feel an oddity in my heart. I just don’t want to go back through what I did last Monday, it truly was terrifying, on all levels. Feeling helpless isn’t a feeling that’s easy to let go during something like that.

Tomorrow hopefully Walgreens will get the green light for the Poconazole, that’s the only element missing from my treatment. Which is the high-power antifungal. I also need to get baby aspirin tomorrow, if I can work up the courage to leave the hotel, by myself. That’s one thing I don’t want right now, being alone. If something were to happen again, and I wasn’t able to use my phone I would be in big trouble. I’ve always had the SOS function disabled on my iPhone. When Apple implemented this feature, I accidentally set it off once. The dreaded countdown, the loud noise. Puts you into pure panic mode to stop the call from going out. So since the heart attack, I’ve re-enabled it, in the event I need help, which I hope I’ll never have to use it.

I am hoping that this was the last hospital encounter for awhile, minus Dr. followups. I really need the break. From a time off from work perspective, I think it’s best I take this one day at a time. This isn’t something that you can immediately bounce back from, physically, and emotionally. I just don’t have the mental capacity to balance all the Dr visits that are upcoming, or the constant antibiotics, or just needing to stay current on sleep. Naps are a definite must for right now. I just need to take this time for me. It’s not like the sinus surgery, where about 1-2 weeks, and you’re good. This is a whole new level of recovery. This definitely beats the mastoidectomy hands down.

While I was in the hospital, I texted Susie my IVIg infusion nurse, told her to inform Soleo, and Dr. Sarid of the heart attack. I was supposed to get IVIg this week, but since the attack, he wants me to hold off for a week, and unfortunately, my IVIg rate I was doing, I will no longer be able to do 400ml/h. He said no more than 120ml/h for the short term. I’m fine with that. I need to just stop rushing it, and let the infusion take its time. I don’t think my body can handle being slingshot anymore from a treatment perspective. He did offer to have me go back on SCIg, but I really don’t want to.

The clots in my heart, I can only take an educated guess, is buildup from repeated PICC lines. Every PICC line that I ever had clotted. Became 1 way. Could push medication in, but no blood draw / return. I’m sure there was a fibrin sheath around the tip of the catheter they insert, and when they pull the PICC line, the sheath breaks away. Your body is supposed to just break it down, but with me doing IVIg, and possibly have some sort of clotting disorder (wouldn’t be surprised at this point) all the sheaths that broke away formed clots. Settling in my legs, my arm, my lungs, and now my heart. Clots don’t just happen overnight. It takes time for them to form, and grow. I don’t need a chunk breaking off and it finding a home in my brain. That probably wouldn’t go well.

Most likely I’ll need to do anti-coagulants for the rest of my life. Since I clotted when I was on Xarelto, thats not a good sign. Currently I am back on the Lovenox. It’s an injection I have to do twice a day, 90mg. The shot stings, it sucks, but if it keeps me from clotting, so be it.

I’ll also need to reach out to Dr. Chauhan’s office to get a followup appointment setup. Which I do look forward to doing. I’ll also need to bring up Dr. Sarid’s concern of needing a hematologist follow me, so I’ll go with the one Dr. Chauhan recommends. Since the IVIg increases clotting, and CVID is lifelong, I’ll need to just stay on everything for the rest of my life. But if that’s what it takes to keep me healthy, whatever I can do, to optimize what I’ve got going on, I am willing to do.

My GoFundMe started to pickup again. If you find my blog useful, informative, helpful. Or if you just want to contribute to my ever growing pile of credit card medical debt, I would appreciate it. Just sharing the link on your social media to just get the word out would be huge. You can find the link to the donation further down the blog page, its at the bottom of every post.

Thanks for reading. This has been helpful to me in many ways I cannot describe. I’ll talk to you tomorrow 🙂