Home….

As I sit here on the couch near midnight.  My mind won’t stop running.  My arm fucking kills.  I keep getting weird spasms, and pains.  I’m pretty sure its all fallout, but knowing what was just removed, has me a bit anxious to the fact that something might be still wrong.  Call me crazy all you want UC Health (still fuck you), but I’m pretty confident in saying that, the DVT that I had earlier this year wasnt resolved.  

 

The DVT came from the PICC line that was installed in my right arm to fend off whatever infection was raging through my face.  Since then, my arm hasnt looked right.  It’s always been swollen (no I don’t lift).  I would get weird seizing pains in my hand that would literally lock up my hand from closing.  My arm was always red too, a dark red.  What I think happened here, and I am fairly certain I am accurate, is that the UC Health hospitalization I had 3 weeks ago, where they blew out my IV in my right AC (next to the elbow), caused the old clot remanents to move up closer towards my heart.  

 

It’s the only logical explaination here.  Coupled with the fact that immuglobulin causes increased risks for clotting, its just a perfect storm.  As I sat there on the table during the second surgery, much ran through my head.  Yeah, I was awake.  The drugs didn’t work.  I felt, heard, everything.  Even got to see the clots on the big screen.  It was so hard to stay still.  It fucking hurt.  I don’t think they used enough versed to keep me down.  The first surgery was much better, but I digress.  Nothing I can do about it now, just a bad experience.  

 

I am super grateful that Swedish finally listened.  The first doctor I talked to seemed reluctant to listen, but she went along with the clot theory.  Swedish did an amazing job springing into action after seeing the clots in the ultrasound.  There was no denying something was wrong.  

 

At home, I am apprehensive at best.  Sitting in an ICU, around people who have been there for months put things into perspective for me.  Yes, the past 3 years have been the absolute worst for me.  The day after my surgery, Gabe got me out of bed for a walk.  And a talk.  It was good to just talk to someone else instead of myself (worst conversations ever).  As we rounded the ICU (Nobody had COVID), I got to glimpse into the rooms.  

 

All walks of life.  All ages.  Heartbreaking at best.  Seeing people in negative pressure rooms.  Hooked up to every machine possible keeping them alive.  Here I am walking around with no immune system and a high risk patient.  It was sombering at best.  We talked about the election, stupid people, the future.  Just things.  I managed to do 1 lap, and asked “Want me to do more?”  “Yes.”  So I did 3 laps.  My body was so angry, but I needed to move.  Mind you I did this wacked up on Dilaudid.  #noproblem. I knew that if I showed progress, that would get me out of the ICU, and home hopefully.

 

Home.  Most people take it for granted.  I don’t anymore.  I love home.  Home is the one place I can go where everything is.  I missed my wife the most in the hospital.  She has been instrumental to helping me get care, take care of me, and just be the person I married.  My best friend.  I remember hiding the clot info from her.  I didn’t want to scare her anymore than she already was.  When she was denied entry @ Swedish (COVID Rules), I looked at her as this was the last time I was going to see her.  I saw frustration on her face.  I remember texting her that things were more serious than I was leading on.  I just remember keeping her in my thoughts to keep me from going to “that place”.

 

I told her “I love you” as much as I could.  I told her that I just wanted to be home.  Being @ home tells me everything is ok.  Listening to my wife yell at me for 7987344th time about dishes.  I don’t care, I love hearing it.  It tells me that everything is “normal”.  Whatever that normal is, I am not sure.  I just know that the more I am at home, the more things will be “ok”.  I haven’t told may people about what happened this past week.  Again, kinda sick of reaching out to my friends/family with my issues/problems.  Just seems that’s all I complain/talk about anymore.

 

My body has been going through some weird changes since the surgery.  I know that my heartrate has literally been all over the place.  Marathon mode, warp speed, turtle.  All in the range of 10 minutes.  It truely is amazing how well the human body adjusts to trauma, inflammation, infection, etc.  I honestly don’t know what it feels like to be healthy anymore.  I’ve lost that “baseline” so to speak of this is how i should feel every day.  My blood pressure has started to look normal.  ECG’s that I take with the watch don’t look as crazy as they used to with all the PVC’s and irregularities.  So maybe this has been lurking in the background the entire time.  Breathing has always been weird, but I will admit for the past 3-4 weeks, going up that 1 flight of stairs to home was hard.  It’s not because I’m lazy or w/e, it was just that bad.  The pains that I was feeling prior to the surgery seem to be fading, or almost non-existent now.  Which is somewhat relieving. 

 

I have a feeling that Anthem is going to try to drop me as a insured.  This year alone, I am probably going to be very close to 1 Million dollars for this year alone.  I mean, you have a years worth of immune therapy, 4 surgeries, 4 hospitalizations, countless ER visits, etc.  I can honestly admit none of this was in my control.  At all.  The doctors that I had from UC Health were absolute shit.  Probably the worst place to get healthcare in Colorado.  My biggest mistake was trusting UC Health to look out for my well being, after seeing the aftermath of this year, it’s quite clear that for the past 3 years of them being “responsible” for my care, got me nowhere.  

 

The other weird thing that happened today, is that I got a call out of the blue from Immunoe telling me that they are doing away with the Home Buy & Bill program for patients.  Which is basically how I get my SCIg for home.  So now I have to talk to Soleo who is the pharmacy that gets my drug, to make sure that I can continue using them to get my stuff so I can continue doing my immune therapy at home.  I would seriously fucking hate it if I had to go in weekly to Immunoe for my SCIg, which is kind of stupid.  The whole reason I went on SCIg, was so that I could do my therapy on my time.  Anytime.  And not have to get IV’s anymore.  It’s quite clear that IV’s are a bad thing for me ;). So as the lady talked I just kinda stopped her and said exactly that.  So hopefully I can get everything through Soleo, and I dont have to worry about my care going forward drug-wise.  Otherwise I’ll have to get with my nurse @ Anthem to find me a pharmacy that can fill the drug, and everything needed.  After I clicked Publish, I guess I needed to go look.  Soleo is considered “In-Network”, so I think my transition will be quite seemless.  

 

I’ll have to get all my Octapharma stuff moved to them for the copay assistance so that I don’t have to get bent over again this year with affording my medication.  Heres hoping it will be a smooth transition, the less hoops the better.